rescindinc@aol.com

http://www.ageofautism.com/2008/05/sick-monkeys-st.html


AGE OF AUTISM

Editor: Dan Olmsted

05/16/2008


SICK MONKEYS: RESEARCH LINKS
VACCINE LOAD, AUTISM SIGNS


BY DAN OLMSTED


The first research project to examine effects of the
total vaccine load received by children in the 1990s
has found autism-like signs and symptoms in infant
monkeys vaccinated the same way. The study's
principal investigator, Laura Hewitson from the
University of Pittsburgh, reports developmental
delays, behavior problems and brain changes in
macaque monkeys that mimic "certain neurological
abnormalities of autism."

The findings are being reported Friday and Saturday
at a major international autism conference in
London.


Although couched in scientific language, Hewitson's
findings are explosive. They suggest, for the first
time, that our closest animal cousins develop
characteristics of autism when subjected to the same
immunizations – such as the MMR shot -- and
vaccine formulations – such as the mercury
preservative thimerosal -- that American children
received when autism diagnoses exploded in the
1990s.

The first publicly reported results of this research
project come in both oral and poster presentations
on Friday and Saturday at the International Meeting
For Autism Research in London. Poster presentations
must go through a form of peer review before they
are presented at the conference; the papers have not
yet appeared in a scientific journal.


In addition to Hewitson's oral presentation today, on
Saturday in one of two related poster presentations,
the researchers also are reporting in their abstract
that "vaccinated animals exhibited progressively
severe chronic active inflammation [in gastro-
intestinal tissue] whereas unexposed animals did
not. We have found many significant differences in
the GI tissue gene expression profiles between
vaccinated and unvaccinated animals." Numerous
scientific studies, as well as many parents, report
severe GI ailments in children with regressive
autism.

The results are sure to be controversial, in part
because they lend credence to studies first published
in 1998 by British pediatric gastroenterologist
Andrew Wakefield, one of Hewitson's co-authors on
these findings. He described an unusual
inflammatory bowel condition in children who had
regressed into autism after they received the
measles-mumps-rubella (MMR) vaccination.
Wakefield is currently fighting charges of medical
misconduct in Britain over allegations of
conflict-of-interest and improper procedures related
to that paper. He denies the charges.


In the program for the conference, the 7th Annual
International Meeting for Autism Research (IMFAR),
there are three separate presentations listed that
report results from the overall research program. The
first, an oral presentation entitled "Pediatric Vaccines
Influence Primate Behavior, and Amygdala Growth
and Opioid Ligand Binding" (the "amygdala abstract")
was led by Dr. Hewitson and lists 12 co-authors,
including five of her colleagues from the University of
Pittsburgh and Dr. Wakefield. Other authors are
chemists, pathologists and psychologists from the
universities of Kentucky, California-Irvine, and
Washington.


Hewitson's introductory presentation will be followed
by two poster presentations on Saturday; one of the
two, "Pediatric Vaccines Influence Primate Behavior,
and Brain Stem Volume and Opioid Ligand Binding",
was led by Wakefield and includes six additional
co-authors.

It focuses on the developmental effect of vaccine
exposures on brain growth during infancy. The
second, "Microarray Analysis of GI Tissue in a
Macaque Model of the Effects of Infant Vaccination,"
was led by Steven Walker of Wake Forest University
and performed gene array analysis on the intestinal
tissues of the vaccinated and unvaccinated monkeys.


The studies address – albeit in animals, not children
-- one of the major criticisms by parents and
scientists concerned about a possible link between
the greatly stepped-up immunization schedule in the
1990s, including higher exposure to the mercury
preservative, and autism. While the Food and Drug
Administration approves individual vaccines as safe
and effective, and an advisory committee to the
Centers for Disease Control and Prevention
recommends the childhood immunization schedule
adopted by the states, the overall health outcomes
from the total vaccine load, versus no vaccinations at
all, have never been compared, the authors said.


A bill requiring the government to conduct a study of
autism rates in unvaccinated American children is
pending in the U.S. House of Representatives,
co-sponsored by Reps. Carolyn Maloney (D-N.Y.) and
Tom Osborne (R.-Neb.). Just this week, former
National Institutes of Health Director Bernadine
Healy called for more research into a possible
vaccine link to autism and said the question had not
been settled, despite repeated assertions to that
effect by the CDC, the Institute of Medicine and the
American Academy of Pediatrics.


In the abstract for today's oral presentation, the
authors noted that macaques, the type of monkey
used in the study, "are commonly used in pre-clinical
vaccine safety testing, but the combined childhood
vaccine regimen, rather than individual vaccines, has
not been studied. Childhood vaccines are a possible
causal factor in autism, and abnormal behaviors and
anomalous amygdala growth are potentially
inter-related features of this condition."

The study found evidence of both behavioral and
biological changes after the 13 macaque monkey
infants were administered proportional doses,
adjusted for age, of the vaccines recommended
between 1994 and 1999. Three monkeys were not
given any vaccines.

"Primate development, cognition and social behavior
were assessed for both vaccinated and unvaccinated
infants using standardized tests developed at the
Washington National Primate Research Center." MRI
and PET scans looked for brain changes after
administration of the MMR.


"Compared with unexposed animals, significant
neurodevelopmental deficits were evident for
exposed animals in survival reflexes, tests of color
discrimination and reversal, and learning sets," the
authors reported. "Differences in behaviors were
observed between exposed and unexposed animals
and within the exposed group before and after MMR
vaccination. Compared with unexposed animals,
exposed animals showed attenuation of amygdala
growth and differences in the amygdala binding of
[11C]diprenorphine. Interaction models identified
significant associations between specific aberrant
social and non-social behaviors, isotope binding, and
vaccine exposure."


One of the Saturday abstracts makes the further
point that the research "revealed significant
differences between exposed and unexposed
animals" in the kinds of developmental behaviors a
mother might be able to observe, "with delayed
acquisition of root, suck, clasp hand, and clasp foot
reflexes." They conclude by noting that "This animal
model examines the neurological consequences of
the childhood vaccine regimen, Functional and …
brainstem anomalies were evident in vaccinated
animals that may be relevant to some aspects of
autism. The findings raise important safety issues
while providing a potential animal model for
examining aspects of causation and disease
pathogenesis in acquired neurodevelopmental
disorders."


--
Dan Olmsted is Editor of Age of Autism.


```````````````````````



http://www.ageofautism.com/2008/05/sick-monkeys-st.html



PEDIATRIC VACCINES INFLUENCE
PRIMATE BEHAVIOR: ABSTRACTS


05/16/2008


POSTED WITH PERMISSION



This piece accompanies Dan Olmsted's "Sick
Monkeys" piece.

- - - -


Pediatric Vaccines Influence Primate Behavior,
and Amygdala Growth and Opioid Ligand Binding
Friday, May 16, 2008: IMFAR

L. Hewitson , Obstetrics, Gynecology and
Reproductive Sciences, University of Pittsburgh,
Pittsburgh, PA B. Lopresti , Radiology, University of
Pittsburgh, Pittsburgh, PA C. Stott , Thoughtful
House Center for Children, Austin, TX J. Tomko ,
Pittsburgh Development Center, University of
Pittsburgh, Pittsburgh, PA L. Houser , Pittsburgh
Development Center, University of Pittsburgh,
Pittsburgh, PA E. Klein , Division of Laboratory
Animal Resources, University of Pittsburgh,
Pittsburgh, PA C. Castro , Obstetrics, Gynecology and
Reproductive Sciences, University of Pittsburgh,
Pittsburgh, PA G. Sackett , Psychology, Washington
National Primate Research Center, Seattle, WA S.
Gupta , Medicine, Pathology & Laboratory Medicine,
University of California - Irvine, Irvine, CA D. Atwood
, Chemistry, University of Kentucky, Lexington, KY L.
Blue , Chemistry, University of Kentucky, Lexington,
KY E. R. White , Chemistry, University of Kentucky,
Lexington, KY A. Wakefield , Thoughtful House
Center for Children, Austin, TX

Background: Macaques are commonly used in
pre-clinical vaccine safety testing, but the combined
childhood vaccine regimen, rather than individual
vaccines, has not been studied. Childhood vaccines
are a possible causal factor in autism, and abnormal
behaviors and anomalous amygdala growth are
potentially inter-related features of this condition.

Objectives: The objective of this study was to
compare early infant cognition and behavior with
amygdala size and opioid binding in rhesus
macaques receiving the recommended childhood
vaccines (1994-1999), the majority of which
contained the bactericidal preservative
ethylmercurithiosalicylic acid (thimerosal).

Methods: Macaques were administered the
recommended infant vaccines, adjusted for age and
thimerosal dose (exposed; N=13), or saline
(unexposed; N=3). Primate development, cognition
and social behavior were assessed for both
vaccinated and unvaccinated infants using
standardized tests developed at the Washington
National Primate Research Center. Amygdala growth
and binding were measured serially by MRI and by
the binding of the non-selective opioid antagonist
[11C]diprenorphine, measured by PET, respectively,
before (T1) and after (T2) the administration of the
measles-mumps-rubella vaccine (MMR).

Results: Compared with unexposed animals,
significant neurodevelopmental deficits were evident
for exposed animals in survival reflexes, tests of
color discrimination and reversal, and learning sets.
Differences in behaviors were observed between
exposed and unexposed animals and within the
exposed group before and after MMR vaccination.
Compared with unexposed animals, exposed animals
showed attenuation of amygdala growth and
differences in the amygdala binding of
[11C]diprenorphine. Interaction models identified
significant associations between specific aberrant
social and non-social behaviors, isotope binding, and
vaccine exposure.

Conclusions: This animal model, which examines for
the first time, behavioral, functional, and
neuromorphometric consequences of the childhood
vaccine regimen, mimics certain neurological
abnormalities of autism. The findings raise important
safety issues while providing a potential model for
examining aspects of causation and disease
pathogenesis in acquired disorders of behavior and
development.


- - - -


Pediatric Vaccines Influence Primate Behavior,
and Brain Stem Volume and Opioid Ligand Binding
Saturday, IMFAR

Wakefield , Thoughtful House Center for Children,
Austin, TX C. Stott , Thoughtful House Center for
Children, Austin, TX B. Lopresti , Radiology,
University of Pittsburgh, Pittsburgh, PA J. Tomko ,
Pittsburgh Development Center, University of
Pittsburgh, Pittsburgh, PA L. Houser , Pittsburgh
Development Center, University of Pittsburgh,
Pittsburgh, PA G. Sackett , Psychology, Washington
National Primate Research Center, Seattle, WA L.
Hewitson , Obstetrics, Gynecology and Reproductive
Sciences, University of Pittsburgh, Pittsburgh, PA


Background: Abnormal brainstem structure and
function have been reported in children with autism.
Opioid receptors play key roles in neuro-ontogeny,
are present in brainstem nuclei, and may influence
aspects of autism. Childhood vaccines are a possible
causal factor in autism and while primates are used
in pre-clinical vaccine safety testing, the
recommended infant regimen (1994-1999) has not
been tested.

Objectives: The objective of this study was to
compare brain stem volume and opioid binding in
rhesus infants receiving the recommended infant
vaccine regimen.

Methods: Rhesus macaques were administered
vaccines adjusted for age and thimerosal dose
(exposed; N=13), or placebo (unexposed; N=3) from
birth onwards. Brainstem volume was measured by
quantitative MRI, and binding of the non-selective
opioid antagonist [11C]diprenorphine (DPN) was
measured by PET, at 2 (T1) and 4 (T2) months of
age. Neonatal reflexes and sensorimotor responses
were measured in standardized tests for 30 days.

Results: Kaplan-Meier survival analyses revealed
significant differences between exposed and
unexposed animals, with delayed acquisition of root,
suck, clasp hand, and clasp foot reflexes. Interaction
models examined possible relationships between
time-to-acquisition of reflexes, exposure, [3C]DPN
binding, and volume. Statistically significant
interactions between exposure and
time-to–acquisition of reflex on overall levels of
binding at T1 and T2 were observed for all 18
reflexes. For all but one (snout), this involved a
mean increase in time-to-acquisition of the reflex for
exposed animals. In each model there was also a
significant interaction between exposure and MRI
volume on overall binding.

Conclusions: This animal model examines the
neurological consequences of the childhood vaccine
regimen. Functional and neuromorphometric
brainstem anomalies were evident in vaccinated
animals that may be relevant to some aspects of
autism. The findings raise important safety issues
while providing a potential animal model for
examining aspects of causation and disease
pathogenesis in acquired neurodevelopmental
disorders.


- - - -


Microarray Analysis of GI Tissue in a Macaque
Model of the Effects of Infant Vaccination
Saturday, May 17, 2008 IMFAR

S. J. Walker , Institute for Regenerative Medicine,
Wake Forest University Health Sciences, E. K.
Lobenhofer , Cogenics, a Division of Clinical Data E.
Klein , Division of Laboratory Animal Resources,
University of Pittsburgh, A. Wakefield , Thoughtful
House Center for Children, Austin, TX L. Hewitson ,
Obstetrics, Gynecology and Reproductive Sciences,
University of Pittsburgh, Pittsburgh, PA


Background:  There has been considerable debate
regarding the question of an interaction between
childhood vaccinations and adverse sequelae in the
gastrointestinal tract, immune system, and central
nervous system of some recipients. These systems,
either singly or in combination, appear to be
adversely affected in many ASD children.  Although
pre-clinical tests of individual vaccines routinely find
the risk/benefit ratio to be low, previously there has
not been a study to examine the effects of the
comprehensive vaccination regime currently in use for
infants.

Objectives:  This study was designed to evaluate
potential alterations in normal growth and
development resulting from the vaccine regimen that
was in use from 1994-1999.  Specifically, this portion
of the study was to compare the gene expression
profiles obtained from gastrointestinal tissue from
vaccinated and unvaccinated infants.

Methods:  Infant male macaques were vaccinated
(or given saline placebo) using the human
vaccination schedule. Dosages and times of
administration were adjusted for differences between
macaques and humans.  Biopsy tissue was collected
from the animals at three time points: (1) 10 weeks
[pre-MMR1], (2) 14 weeks [post-MMR1] and, (3)
12-15 months [at necropsy].  Whole genome
microarray analysis was performed on RNA extracted
from the GI tissue from 7 vaccinated and 2
unvaccinated animals at each of these 3 time points
(27 samples total).

Results:  Histopathological examination revealed
that vaccinated animals exhibited progressively
severe chronic active inflammation, whereas
unexposed animals did not.  Gene expression
comparisons between the groups (vaccinated versus
unvaccinated) revealed only 120 genes differentially
expressed (fc >1.5; log ratio p<0.001) at 10 weeks,
whereas there were 450 genes differentially
expressed at 14 weeks, and 324 differentially
expressed genes between the 2 groups at necropsy.

Conclusions:  We have found many significant
differences in the GI tissue gene expression profiles
between vaccinated and unvaccinated animals.
These differences will be presented and
discussed.


- - - -

The authors and organizations are withholding
comment or elaboration until the full articles are
published.*
 

The text below was written in 2002 by Tom Hennessy, the founder of May 12th, International Awareness Day for ME/CFS, GWS, MCSS, and FMS.


We are six years later now and ME patients all over
the world are still suffering from this unbearable
disease without any hope for the near future; many
of them died and left their loved ones in distress.

The dark powers who conspire to hide the real nature
of this neurological, multi-systemic disease, are still
in power.

There is much to do in the next two years, before
Tom Hennessy's wish at the end of his article will
come true.


Pat Fero, executive Director of the Wisconsin CFS
(CFIDS-ME) Association. INC., who lost her son
because of ME, wrote in the same year:


*....I think we should call May 12th what it is, A
DAY OF PROTEST against the other 364 days that
we endure the ignorance and subvert the anger.
Maybe protest is the way humans have always
corrected injustice....*


PROTEST -   by writing letters to governments,
newspapers, etc- post-card actions, by actions like
the RSM demonstration, by resigning one's
membership from charities, which are in league with
the dark powers, by refusing to take part in CBT and
GET *cures* -  PROTEST.......



~jvr


````````


To Whom it may concern:



Regarding the 10th Anniversary of May 12th,
International Awareness day for ME/CFS, GWS,
FMS, and MCSS.


May 12th was started by RESCIND, Inc. a non-profit
organization started to get various competing groups
to stop throwing arrows at each other for ONE day
each year, and to put all their efforts into getting
recognition, research and basic simple, honest
respect for some VERY BRUTAL and Vicious diseases.

The term RESCIND means to "repeal, roll back or
abolish". ...our WHOLE idea was to lobby, to protest,
and to fight back. Our very name IS our mission
statement "Repeal the Existing Stereotype about
Chronic Immunological and Neurological Diseases".

OUR whole existence is to PROTEST! I have been
hassled by government officials at EVERY meeting i
have ever attended in the past 14 years. We are ALL
swimming up a Very polluted, very corrupt, and very
oppressive river of ignorance and contempt. and we
are just wounded minnows in a sea of sharks.

The late, great, heroine Helen Keller once said, "I
can endure being deaf, dumb and blind, but what i
can't stand is the incredible apathy of my fellow
man".

MOST people don't care about anyone but
themselves. Sad but true.


We have a bunch of people who lie around all day,
without visible injuries, and who claim to be near
death on a regular basis. How do we protest that?
We asked for ideas. We asked people to make May
12th their own. We conjured up plans to have "sleep
in's" on the steps of Capitol buildings around the
world at least ONE day each year.

The Day of May 12th was picked for several reasons.
more detail can be found at our website: formerly
www.geocities.com/capitolhill/4277  now http://www.rescindinc.org -  then click on
the MAY 12th link. There are posters, sample letters
and media and government addressed, phone and fax
numbers, e-mails and other contact information. We
picked Ms. Florence Nightingale for NUMEROUS
reasons, and the time of year of her birthday was a
significant part of that.

My dad was the chief lobbyist for Getty Oil during the
oil embargos of the 1970's and I was witness to
literally BILLIONS of dollars being won or lost due
the signing of a bill or law by Congress. We have
examples of the same thing today. I bet you dollars
to donuts that the amount of money  spent on
"anthrax" in the year 2000 was negligible. but the
amount budgeted for anthrax "research, prevention,
awareness and education " in NEXT year's budget will
be in the MANY BILLIONS of dollars!!! - Things CAN
change on a dime in the government, if the will, and
the public knowledge is evident.


So, as far back as 1988, i tried to urge Marc Iverson,
the founder of the CAA to put more emphasis on
"lobbying" in D.C. than in private research for the
cause and cure of ME/CFS. I felt that it would take
BILLIONS of dollars and many decades to completely
unravel the mysteries of these terrible diseases.

As happens with many movements, we disagreed.
and HE had the rich dad, and the big mailing list. So,
the CAA went one way, and RESCIND, Inc. went
another. It took until 1992, and the International
medical conference at Albany New York, that i
decided "enough was enough" and we needed to
fight back.

There is strength in numbers. So, i looked around
and found that there were groups of Sick gulf war
veterans with almost identical symptoms. and MCS
groups with overlapping symptoms. and FMS groups,
and chroic Lyme disease groups...and MS groups..and
Lupus groups..

So, i thought, if we can get some of these groups
together at least one day each year and LOBBY for
people with CHRONIC IMMUNOLOGICAL and
NEUROLOGICAL DISEASES.


Why did we pick Florence Nightingale as our symbol?



Ms. Nightingale was a nurse, a teacher, a women,
and a tireless worker for the rights of Crimean War
Veterans. She had given up a life of luxury and
helped create the first ever school of nursing and she
inspired the founding of the International Red Cross.
She was also taken ill at the age of 35 with a
"flu-like illness" and was bedridden for the next 50
years! AND her birthday was May12th, which is a
Spring day in the northern Hemisphere and an
autumn day in the southern Hemisphere.

From day one, we urged people to use their
imagination from table displays in local libraries, to
getting declarations and petitions signed and letter
writing campaigns. ..to even the OFFER to donate
blood at various blood banks. We NEVER urged
anyone to actually donate blood. BUT, we did urge
people to get copies of letters from the CDC
department of VIRAL and RICKETTSIAL DISEASES
that said, "people with CFS should NOT donate
blood". and then call their local TV stations and alert
them that a dozen people with ME/CFS are "offering
to donate blood on May 12th"  at the local Red Cross
Chapter and that the local media might want to
investigate. This sure sounded like a "protest" to
me..



I still think people should use May 12th in whatever
way suits them. I think that CAA made a mistake in
trying to separate "lobby" day from "awareness" day.
OUR group pushed LOBBY day from 1988. My dad
was the lobbyist. Marc's father was the chairman of a
large Steel company. We STRONGLY urge people to
protest. Florence Nightingale's WHOLE adult life was
one big protest!


Fight back as best you can, as long as you can. there
are more suggestions and links at
http://www.rescindinc.org


Ultimately, we care most about getting better. NO
ONE else will care as much about us as we care
about ourselves. i Say fight back on May 12th, or
come up with a better plan. But just sitting at home,
or lying around complaining will not help ourselves,
or our sick friends. Thank YOU to all who have fought
back in ANY way they could for the past decade.


Remember the words of the German Philosopher
Edwin Schopenhauer. "All truth goes through three
stages:

* First, it is ridiculed. * Second, It is vehemently
opposed. * Finally, it is accepted as being
self-evident".


Listen to your heart.
Do the best you Can.
and hopefully, on the 20th anniversary of
May 12<sup>th</sup>, we will finally have something to
celebrate!


Sincerely,
Tom Hennessy, jr.
 

Problems with the so-called 'Fair name' campaign:

(Condensed but UNMODIFIED)

Why it is in the best interests of all patient groups involved to reject and
strongly oppose this misleading and counter-productive proposal to rename
'CFS' as 'ME/CFS' (Condensed version)

Copyright © by Jodi Bassett* May 2008

Taken from http://www.ahummingbirdsguide.com/problemswithnamechange.htm

Many of the patients given a diagnosis of Chronic Fatigue Syndrome (CFS) are
very physically ill. At first glance the idea that the name 'CFS' is
inappropriate, unfair and is the cause of so much harm and misunderstanding
seems so obvious as to not even merit further discussion. It seems so
logical that one of the first things that patients given this diagnosis must
do is campaign hard to have the name 'CFS' changed to something far more
serious sounding and more appropriate.

But the problem is that it only appears that way if you don't have all, or
indeed ANY, of the facts. When you finally get your hands on even the most
basic factually accurate information about 'CFS'(and Myalgic
Encephalomyelitis) that is NOT created by financial stakeholders or those
who have been swayed or misinformed by these same vested interest groups,
you quickly become aware of what a sham the idea of renaming 'CFS' really is
and how it will make things so much WORSE for all the different patient
groups involved.

Please read this information on the US so-called 'Fair Name' campaign
carefully. This proposed 'ME/CFS' name change is just another diversion that
these vested interest groups are hoping we will fall for, nothing more.

Don't let yourself be the unwitting tool of unethical insurance companies
through ignorance!



Background information; What is Myalgic Encephalomyelitis? What is 'CFS'?

Myalgic Encephalomyelitis (M.E.) is a debilitating neurological disease
initiated by a virus; an enterovirus. M.E. occurs in both epidemic and
sporadic forms, over 60 outbreaks of M.E. have been recorded worldwide since
1934. M.E. has several unique features but is also similar in a number of
significant ways to diseases such as multiple sclerosis, Lupus and
poliomyelitis (polio). M.E. is a chronic/lifelong disease and in some cases
M.E. is fatal.

M.E. has existed for centuries and was referred to with various different
names (eg. Atypical polio), until the name Myalgic Encephalomyelitis was
coined in 1956 in the UK. The term was invented jointly by Dr A Melvin
Ramsay and by Dr John Richardson. It was obvious to these physicians that
they were dealing with the consequences of an epidemic and endemic
infectious neurological disease. As Dr Byron Hyde MD writes:

'The reason why these physicians were so sure that they were dealing with an
inflammatory illness of the brain is that they examined patients in both
epidemic and endemic situations with this curious diffuse brain injury. In
the epidemic situation with patients falling acutely ill and in some cases
dying, autopsies were performed and the diffuse inflammatory brain changes
are on record (2006, [Online]).'

In 1957, the Wallis description of M.E. was created. In 1959 Sir Donald
Acheson conducted a major review of M.E. In recognition of the overwhelming
amount of compelling scientific evidence available, M.E. was formally
classified as a neurological (CNS) disease in the World Health
Organization's International Classification of Diseases in 1969 with the
code G.93.3. In1978 the Royal Society of Medicine held a symposium on M.E.
at which M.E. was accepted as a distinct entity. The Ramsay case description
of M.E. was published in 1981. The recorded medical history of M.E. as a
debilitating organic neurological illness affecting children and adults is
substantial; it spans over 70 years and has been published in prestigious
peer-reviewed journals all over the world.

In short, Myalgic Encephalomyelitis is a well-documented, severely
disabling, scientifically measurable and verifiable, acute onset,
potentially fatal, distinct organic neurological disease initiated by a
virus and linked in several significant ways to polio.

'CFS' in contrast, is not a distinct disease. Despite the fact that the new
name and definition of CFS were created in a response to an outbreak of what
was unmistakably M.E., this new name and definition did not describe the
known signs, symptoms, history and pathology of M.E. As M.E. expert Dr Byron
Hyde MD explains:

'Do not for one minute believe that CFS is simply another name for Myalgic
Encephalomyelitis. It is not. The CDC 1988 definition of CFS describes a
non-existing chimera. The CDC definition is not a disease process. It is (a)
a partial mix of infectious mononucleosis /glandular fever, (b) a mix of
some of the least important aspects of M.E. and (c) what amounts to a
possibly unintended psychiatric slant to an epidemic and endemic disease
process of major importance. Any disease process that has major criteria, of
excluding all other disease processes, is simply not a disease at all; it
doesn't exist (2006, [Online]).'

The man-made financially motivated 'CFS' definitions describe no distinct
patient group and so a diagnosis of 'CFS' is merely a wastebasket diagnosis;
a misdiagnosis. What a diagnosis of 'CFS' actually means is that the patient
has a gradual onset fatigue syndrome which is usually due to a missed major
disease. i.e. the patient has:

'a. Missed cardiac disease, b. Missed malignancy, c. Missed vascular
disease, d. Missed brain lesion either of a vascular or space occupying
lesion, e. Missed test positive rheumatologic disease, f. Missed test
negative rheumatologic disease, g. Missed endocrine disease, h. Missed
physiological disease, i. Missed genetic disease, j. Missed chronic
infectious disease, k. Missed pharmacological or immunization induced
disease, l. Missed social disease, m. Missed drug use disease or
habituation, n. Missed dietary dysfunction diseases, o. Missed psychiatric
disease. (Hyde 2006, [Online])'

M.E. and 'CFS' are not the same. The two entities could not be more
different. M.E. is a well-defined distinct organic neurological disease
which has exited for centuries. 'CFS' is a fictional and financially
motivated man-made disease category, a scientific fraud, which defines
exactly nothing. The suggestion that the mixed term 'ME/CFS' become the new
name for 'CFS' makes no logical or scientific sense.



So why is 'ME/CFS' being used more often?

Generally speaking, it seems like using 'ME/CFS' is just about popularity,
very often, unfortunately. That it is just about playing both or all sides.
These mixed terms are accepted by many propaganda creating and supporting
'CFS' researchers and 'advocacy' groups, by some well-meaning but
misinformed people misdiagnosed with 'CFS' who don't have M.E. as well as by
some neurological M.E. patients. So supporting these vague mixed terms makes
an advocate or advocate group popular with the largest possible number of
patients and patient groups and funding bodies etc. But it is really hard to
see what the POINT is, of being a popular and/or well-funded 'advocacy'
group if what you are doing is only harming the patient groups you claim to
represent.

None of the justifications made by individual advocates or advocacy groups
for using the term 'ME/CFS' hold up. For example, the claim that we have to
use this term because of the Canadian 'ME/CFS' definition is bogus. Parts of
the paper are relevant to M.E. to some extent, but it is at best a mix of
M.E. and 'CFS' and does not select a 100% M.E. patient group, or any other
homogenous group. For each scientifically valid part of the paper there is
also another scientifically questionable and psychologically biased part,
and overall it also strongly suggests incorrectly that M.E. and 'CFS' are
the same which is the entire problem!

Then there are the equally unconvincing reasons given for using 'ME/CFS' by
the US so-called 'Fair name' campaign involving Rich
Carson/ImmuneSupport/Prohealth, the IACFS, and others. The 'Fair name' site
says:

'In August, 2006, we launched a serious effort to bring more validity to
CFS, to give it a name that more closely reflects the severity of the
condition. Toward this end, eight of the most highly regarded CFS experts in
the world came together and formed a Name Change Advisory Board. In January,
2007, they discussed recommendations for this new name, finally deciding on
ME/CFS.'

Let's look at the claimed reasons for this choice one by one.


1. "ME/CFS is medically and diagnostically correct, reflecting the science
of this illness, giving it the credibility it deserves."

This claim is just ridiculous. As Professor Malcolm Hooper explains:

'The term Myalgic Encephalomyelitis has been included by the World Health
Organization (WHO) in their International Classification of Diseases (ICD),
since 1969. The current version ICD-10 lists M.E. under G.93.3 -
neurological conditions. It cannot be emphasized too strongly that this
recognition emerged from meticulous clinical observation and examination
(2006, [Online]).'

The term Myalgic Encephalomyelitis is only correct and credible when applied
to the right illness in just the same way that the term Multiple Sclerosis
is 'medically and diagnostically correct' but only when it is used to refer
to actual MS patients. To say a term is 'medically correct' but then to
apply it incorrectly to a completely different patient group or groups, is
just the worst sort of slippery and dishonest political trickery.

Patients with Lupus cannot simply decide that they would prefer to use the
name 'Diabetes.' Patients with MS have no right to decide that they would
prefer the term 'Parkinson's.' Patient groups cannot pick new names for
themselves in an unscientific and random fashion - nor unethically try to
take for themselves names which have already been taken for decades by
well-defined patient groups. The vast majority of patients misdiagnosed with
'CFS' - an estimated 75% at least - do not have M.E., and so have no right
to use the term M.E. or any variation thereof any more than they do to use
terms such as 'cancer' or 'Diabetes.' There is also nothing to be gained for
this heterogeneous patient group by the use of such inaccurate and
inappropriate terms, and much to be lost.

As explained previously, there is no such distinct disease as 'CFS' as
described by any of the 'CFS' definitions and so 'CFS' can only ever be a
misdiagnosis. It doesn't exist. The bogus disease category of 'CFS' is as
far from being 'medically and diagnostically correct' as it is possible to
be. The two terms describe completely different entities and cannot both be
correct.

Putting M.E. together with 'CFS' doesn't add to the credibility of 'CFS' -
it just strips M.E. of credibility and scientific legitimacy - which indeed
seems to be the entire point of the exercise.



2. "Used as an umbrella term, ME/CFS will satisfy those who wish to use
Myalgic Encephalopathy, and those who prefer Myalgic Encephalomyelitis."

The M.E. part of 'ME/CFS' cannot refer to two terms at once. It shows
medical disrespect to think an acronym can work that way. This is clearly a
calculated attempt to be inclusive - but it makes the acronym meaningless.
The last thing any of us needs is yet another vague and ill-defined umbrella
term that can be (and will be) manipulated by vested interest groups for
their benefit and to our detriment!

Myalgic Encephalomyelitis is an acutely acquired illness initiated by a
virus infection which is characterized by post encephalitic damage to the
brain stem. This is always damaged in M.E. - hence the name Myalgic
Encephalomyelitis. The name and definition of the infectious neurological
disorder Myalgic Encephalomyelitis has a 50 year history, and is backed up
by an enormous amount of solid scientific evidence.

Unlike Myalgic Encephalomyelitis, 'Myalgic Encephalopathy' is a made-up term
that was created only after the disastrous 'CFS' definitions. The term
ME'opathy was created in the UK, for reasons involving politics and vested
interests rather than science. The claimed scientific justifications for the
creation and use of this made-up name are bogus. ME'opathy is linked to no
specific definition and no specific patient group. The term was not created
through a careful examination of the evidence or because of any specific
research findings.

There is no scientific evidence behind ME'opathy whatsoever and
(as is appropriate) this term has no WHO ICD classification. In practical
terms, ME'opathy is merely another name for the bogus disease category of
'CFS.' It is a made-up term that could be taken to mean anything and so is
just as meaningless and as harmful as 'CFS' is.

Do not be fooled by the superficial similarity of these terms - Myalgic
Encephalomyelitis is not at all the same thing as 'Myalgic Encephalopathy.'
Patients with authentic M.E. do have the damage to the brain referred to in
the name Myalgic Encephalomyelitis, however this damage is of course not
found in patients suffering various types of chronic fatigue illnesses which
are commonly misdiagnosed as 'CFS.' Legitimate M.E. experts and researchers
do not support the name change from Myalgic Encephalomyelitis to 'Myalgic
Encephalopathy.' The Committee for Justice and Recognition of Myalgic
Encephalomyelitis explain:

'Myalgia means muscle pain. Encephalo - means brain, myelitis has two
meanings, some say it refers to inflammation of the spinal chord, others to
inflammation of the myelin, the covering of the brain. Both are physical
descriptions. Opathy, means pathology - which can mean 'the science or
origin, nature, and courses of diseases', but another meaning is 'any
abnormal state: social pathology' (Delbridge 1998). Hence encephalopathy can
mean 'brain abnormal state' and this meaning would therefore endorse
treatments such as CBT and GET - which do not work in those with
neurological M.E. This change of name to 'opathy' can therefore endorse
psychological therapies as treatment. Muscle pain brain myelin inflammation
is not the same as muscle pain brain abnormal state. The neurological damage
which is evident in M.E. can be explained by myelin inflammation but it
cannot be explained by 'brain abnormal state'. Evidence for brain damage has
been found in the research of persons such as Casse et al. (2001), Poser
(1992) and others, and there is often confusion with MS by persons in the
medical profession - where there is myelin damage ([2007, [Online]).'

If you have a look at who supports ME'itis and who supports ME'opathy it is
very easy to see who really benefits from ME'opathy, and it isn't the
patients. ME'opathy is supported by all our worst abusers and by the most
harmful propaganda producing and supporting patient groups. (The same may be
said for support of this bogus 'Fair name' campaign. Neither this campaign
nor the term ME'opathy are supported by any legitimate advocates.)

The use of the meaningless term 'Myalgic Encephalopathy' is a dishonest
attempt to divest Myalgic Encephalomyelitis of the legitimacy and protection
of its correct WHO classification; one of the few important protections
patients have. The term 'Myalgic Encephalopathy' is a political creation
with no scientific validity, just as 'CFS' is. It is a trap. This loss of
the correct WHO classification through a name change is something that
patient groups MUST do everything in their power to stop if they wish to
stop the already severe abuse and mistreatment becoming even more entrenched
and legitimized.



3. "ME/CFS maintains "CFS," avoiding problems with insurance or disability
claims."

This claim is outrageous. It is the bogus disease category of 'CFS' itself
that was designed primarily to cause problems with insurance and disability
claims, and it almost always succeeds!

'CFS' makes getting disability almost impossible, as there are no tests
whatsoever that can be used to prove the existence of 'CFS' and because
there is also so much 'information' available about how easily and
successfully 'CFS' can be managed or even cured. The CDC (and all other)
'CFS' definitions define 'CFS' as a psychological illness - which many
health insurance policies explicitly exclude. (This is the reason for the
psychological bias of 'CFS'- to evade or greatly limit insurance payouts. It
is successful in evading /limiting claims all over the world.)

In the USA the disease name 'CFS' does not positively affect how a person
gets or keeps disability. 'CFS' is not what is called 'a listed impairment'
in the US Social Security System as illnesses like multiple sclerosis, Lupus
and stroke, etc. are. No one is judged 'disabled' for either Social Security
or private insurance purposes 'because they have CFS.' Rather, the decision
is made based upon 'functional impairment.' The symptoms and impairment of a
particular individual DO NOT CHANGE because of a name change. The question
of continuity of a claim could also easily be addressed if a patient
formerly misdiagnosed with 'CFS' were later properly re-diagnosed with M.E.,
or indeed cancer, or any other illness.

This is a specious argument, which aims to instill fear in patients that they
might lose their disability so had better go along with the retention of
'CFS' in any new name. It's just scaremongering.

This whole proposal just doesn't make sense. The reasons given for
supporting this name change by those advocates pushing so hard for its
acceptance seem to be just excuses, not reasons; this is of real concern.

The supposed reasons given for it are illogical, misleading, and
scientifically and historically incorrect. The whole campaign is misleading,
dishonest and grossly unethical. This campaign clearly does not have
concerns for patient welfare, ethics or scientific validity at its core.



So who does benefit from the 'ME/CFS' name change?

Whose interests does 'ME/CFS' primarily serve? That is the real question we
should all be asking. The answer of course is, yet again, powerful financial
vested interest groups such as the medical insurance industry, the vaccine
industry, the government etc. who are saving themselves billions of dollars
through this obfuscation. The groups that benefit from 'ME/CFS' are the same
groups that benefited from the creation of 'CFS.'

It is hardly a coincidence that Professor Simon Wessely - the most powerful
and influential of the group of doctors who have made themselves the tools
of insurance companies - is the person credited with inventing the mixed
term 'CFS/ME.' The mixing of M.E. and 'CFS' into 'CFS/ME' and/or 'ME/CFS'
serves vested interest groups well. This is why so many of the very worst
government reports (and so on) in the UK, Australia and the Netherlands
which talk about patients as if they were mildly ill malingerers who could
easily improve if not recover from their 'fatigue' if only they could be
convinced to try CBT or GET, and so on, (a) often use terms such as 'CFS/ME'
or 'ME/CFS' in the titles and throughout and (b) very often mix in some of
the facts about M.E. (i.e. symptoms, history, severity/disability etc.) with
bogus information about 'CFS' while of course the entirety of the all
important CONCLUSIONS given (i.e. etiology, psychological status,
improvement of symptoms, response to treatments and recovery rates) are
drawn exclusively from non-M.E. patient groups, and from the most mildly
affected physically and the most primarily psychologically ill members of
these groups.

'ME/CFS' and 'CFS/ME' lets these vested interest groups have it both ways.
They get to continue happily with their unscientific and unethical 'CFS'
obfuscation agenda, and they get to do so with far less opposition from the
patients they're harming, or even with the support of some of these patients
and patient groups. This is why 'ME/CFS' articles and studies are even more
dangerous in many ways than pure 'psychological CFS' ones. The issue is not
that 'ME/CFS' just isn't a very good solution that will not do much good, as
many have been arguing. There is so much more than that at stake here. Not
only will 'ME/CFS' not help, it can and will make things so much worse for
us all. It will bury the truth about M.E. even deeper by hiding it in plain
sight and make it harder than ever for anyone to separate M.E. out from the
vague mess of 'CFS' or for those misdiagnosed as 'CFS' to be given a correct
diagnosis and their basic right to appropriate treatment.

The mixing of M.E. and 'CFS' was invented by these vested interest groups
and it is a tool they use to good effect and as much as possible. Clearly,
legitimate patient advocates using THE SAME TWISTED AND OBFUSCATING STRATEGY
is not a good idea and is only going to further their interests instead of
ours.



This isn't just about terminology, it is about definitions and the
involvement of vested interest groups

The terminology is often used interchangeably, incorrectly and confusingly.
But the DEFINITIONS of M.E. and 'CFS' are very different and distinct. Most
often when the term 'ME/CFS' is used, it refers to a bizarre mix of facts
relating to both M.E. and 'CFS' or instead purely facts relating to any of
the various bogus 'CFS' definitions. (The same applies to the terms
'CFS/ME,'
'CFIDS' and 'Myalgic Encephalopathy' etc.)

The 'Fair Name' campaign avoids a clear discussion of definitions. It
clearly has the disastrous CDC definition of 'CFS' at its core however in
order to include all of the very varied patient groups the group claims to
represent. The site also makes their support for the bogus CDC 'CFS'
definition very clear when they say their goal is 'to create a more
equitable, realistic name for what the CDC years ago termed CFS.' Although
the 'Fair Name' group want to be seen as questioning the CDC in various
ways, in fact it's clear that they accept the CDC's authority.

The reason so many of us are ridiculed, neglected, abused, belittled,
laughed at, disbelieved, sneered at, accused of exaggerating or malingering
or laziness by medical staff and by friends and family members etc. IS NOT
BECAUSE OF THE NAME 'Chronic Fatigue Syndrome'! If 'CFS' had instead been
given a neutral name, say 'Reeves' syndrome' or 'Holmes' syndrome,' our
problems would still be exactly the same. Vested interest groups - helped in
this task IMMEASURABLY by the creation of the bogus disease category of
'CFS'
 - would still be flooding the medical, political and media communities with
lies and propaganda which could only have the end result of making us seem
utterly pathetic and undeserving of any respect or sympathy and as if we
didn't have a leg to stand on scientifically speaking.

What else could anyone think about patients which have an illness that is
mild and short lived, but which some patients pretend is severe because they
'enjoy the sick role.' What else could you think about an illness that
despite endless claims by patients of physical abnormalities and despite
considerable resources being wasted on it, has failed to show any consistent
testable abnormalities at all? An illness that can't be tested for and must
be taken completely on faith. An illness where it has been proven that
patients can recover easily with behavioral management techniques but only
if they actually want to recover; which most don't, as patients would prefer
to actually stay ill rather than to admit that they are mentally ill.

In hundreds of different ways, every media article and government press
release about 'CFS' is filled with statements which make it very clear that
this patient group should be treated with contempt, has no scientific
validity and does not deserve the same respect as other patient groups. That
is the constant message. Patients are not merely wrongly categorized as
psychologically ill, it is so much more than that. It is a type of
persecution; patients are talked about (and lied about) as if they were
malingerers and deviants, as if they were beneath contempt and not worthy of
even basic respect or medical care, or even any level of kindness or
compassion - even from their own friends and family. Whatever 'CFS' had been
called, these problems would be EXACTLY THE SAME. The primary cause of our
problems is not the mere name 'CFS' as this campaign dishonestly claims. Why
is this all happening? In short, it's all about money. As Professor Malcolm
Hooper explains:

'In the 1980s in the US (where most of the costs of health care are borne by
insurance companies), the incidence of M.E. escalated rapidly, so a
political decision was taken to rename M.E. as "chronic fatigue syndrome",
the cardinal feature of which was to be chronic or on going "fatigue", a
symptom so universal that any insurance claim based on "tiredness" could be
expediently denied. The new case definition bore little relation to M.E.:
objections were raised by experienced international clinicians and medical
scientists, but all objections were ignored (2001, [Online]).'


Veteran US patient advocate Tom Hennessy also explains that;

'I would really like to steer people away from Rich Carson's site. Their
stupid "fair name" petition is just a big sell-out to the insurance
industry. In the US, 'mental illness' is covered by a lifetime maximum of
only TWO years total disability, and yet, 'physical illness' is covered by
policies that pay you up to 55% of your former salary until you turn 65 and
are eligible for social security. It will cost billions of dollars if they
admit the truth.'

The problem is not the name, and it is also NOT simply that 'CFS' patients
are being mistreated as or mistaken for psychiatric patients. Some of those
patients misdiagnosed with 'CFS' actually do have psychological or
behavioral illnesses. There is no such distinct disease/s as 'CFS' and
'CFS'
is merely a man-made entity created for the benefit of unethical financial
vested interest groups - that is the real problem.

The infectious disease known since 1956 as Myalgic Encephalomyelitis already
has a historically and medically correct name and definition and WHO
classification. We also have clear definitions and names for Fibromyalgia,
post-viral fatigue syndromes, PTSD, burnout, Lyme disease, Candida, Adrenal
exhaustion, cancer, depression, athletes over-training syndrome and each of
the other illnesses commonly misdiagnosed as 'CFS.'

The only thing that makes any sense is for us to fight together to get rid
of 'CFS' in name and definition, and to have patients correctly diagnosed
with and treated for with whichever illnesses they actually have, including
M.E., in a scientific and ethical manner - without any self-interested
interference by financial vested interest groups.



Problems with the whole approach of so-called 'Fair name' campaign

How 'fair' is it that the group chooses a name first and THEN asks patients
to vote on it? But even if patients were given a real vote, how 'fair' would
this be considering that the group avoids giving patients even the most
basic pertinent facts? And what about the fact that negative comments and
objections to this campaign are rejected or deleted from the 'Fair name'
message board - how 'fair' is that?

So much about this campaign is seriously off. None of the important issues
are even mentioned. It's all slick and shiny on the surface, and they repeat
certain emotive keywords and phrases a lot and the tone of voice is very
soothing and positive... but there is nothing meaningful underneath it. As
M.E. advocate Lesley writes:

'I just received a Newsletter from MERUK (formerly 'MERGE') which included a
piece by Cort Johnson, backing the Fair Name campaign. It sounds so
reasonable! So does the Fair Name website! They seem so moderate, willing to
compromise etc. The name 'ME/CFS' is put forward as inclusive and
conciliatory, as though they bring together all the warring factions in
harmony. They make their opponents seem unreasonable, unrealistic and
hot-headed. There is a skill which some people have, of seeming to occupy
the centre ground, of adopting a calm, reasonable tone of voice so that any
disagreement will seem unreasonable and shrill and pugnacious. Simon Wessely
also has this skill. But it is based on wrong premises! Their claims are all
bogus!'

M. Beck, a US M.E. advocate since 1983, writes:

'Fear not! "ProHealth/ImmuneSupport" message boards are here, along with all
the "experts and advocates" to tell you what to think and do! (If you
disagree, you are "negative", their rhetoric implies.) This is an extremely
well-engineered effort, probably designed by the CDC public relations arm in
consort with corporate PR of some entities. Those with corporate and/or
government background will recognize it for what it is. We must do more than
criticize this lethal move. And it IS lethal

I do not get why people are so enamored of "experts", whether it is "expert
researchers or clinicians", or "expert advocates." It is like falling for
advertising, where the most familiar brand name is always "good". It is what
they DO, not the familiar "expert" name, that counts. Shame! Shame! Shame!
upon those who know better and yet support this sham in the weak excuse of
"better than CFS" when the truth is self-interest and a lack of guts.'

M.E. advocate John Anderson adds that:

'All the facts are being hidden just as they were when CFS was invented to
hide "the awful truth" about Myalgic Encephalomyelitis. The name change
advisory board says that the acronym "ME/CFS" is a "medically correct" name
to replace CFS, but it will still have a false CFS fatigue definition
distorting research. How could anyone believe this unimaginative hype that
CFS will disappear when it is clearly part of the acronym/name?

It is apparent that the name change committee does not wish to look beyond
the distorted findings of the heterogeneous CFS studies which inevitably
produce inconclusive results, so who do they really represent? Please stop
and think before you get caught up supporting this mess. Patients not only
suffer severe illness, they have been unnecessarily traumatized with
disbelief, neglect, abuse, poverty, loss of family and friends. This has to
stop.'


The entire 'Fair name' campaign (including the 'Fair name' name itself)
reads far more like a slick marketing or PR exercise by government or by the
insurance or pharmaceutical industries than a genuine patient and doctor
driven advocacy campaign. Could it be that there is a very simple reason for
that?

As one M.E. advocate commented recently: 'When it comes to the so-called
'Fair name' campaign in the US, the only conclusion that makes any sense at
all is that the campaign is not harmlessly or innocently mistaken or
misguided, but that it involves vested financial interests.'



If the 'Far name' campaign is so terrible and unethical, why is it being
supported by that group of US 'CFS' experts?

That is a very good question.

Another good question is why a small number of US 'CFS' 'experts' are yet
again being given the power to make changes that will negatively affect
patients with M.E., and those misdiagnosed with 'CFS' who have other
illnesses, all around the world for many years or even decades to come?



But isn't the gradual approach the only way we will get anywhere?

The so-called 'gradual approach' promoted by the 'ME/CFS' name change
group - along with the bogus subgroups of 'CFS' or 'ME/CFS' idea - just lets
the vested interest groups have it both ways, yet again. If you think that
'ME/CFS' is at least a small improvement from 'CFS' and is the start of many
gradual improvements that will slowly 'add up over time' look first at what
damage 'ME/CFS' has done in other countries. The countries in which the
'ME/CFS' concept is commonplace are those in which patients are subject to
the most severe and shocking abuse; far, far worse than that which occurs
now in the US.

As M.E. advocate Lajla Mark explains: 'Linking CFS to M.E. has been tried
for decades in parts of Europe and Australia with a devastating effect. It
has been like writing out a blank check to the psychiatrists. In other parts
of the world M.E. is already a recognized disease, and it is in fact the
linking of CFS to M.E. that has created the terrible problems there.'

For information on the sort of extreme abuse of 'ME/CFS' patients which
occurs in the UK and the Netherlands and to a lesser extent in Australia -
including ill children being forcibly removed from their homes and their
parents charged with abuse, children being thrown in swimming pools to
uncover their 'faked' symptoms, forced exercise and CBT programs which have
led to severe disability and even death, and so on - please see the section
on abuse in: What is M.E.? Extra extended version.

This same so-called 'gradual approach' strategy has been tried and tried
again for the last 20 years and it has failed utterly. We are worse off now
than 20 years ago. Trusting that if we compromise ourselves now (by mixing
M.E. and 'CFS' even further) that we will be rewarded with something that we
want to happen but which inevitably severely harms the interests of the
vested interest group involved - without any type of force being exerted on
our part - is just fanciful, unfortunately. These groups are never going to
willingly admit the truth about M.E. and 'CFS' when doing so means they lose
millions or even BILLIONS of dollars (and that they have to admit that they
have acted dishonestly and criminally).

This very passive and 'gradual' approach is appealing to many patients (who
are in many cases severely ill, traumatized and abused) but it has no chance
of success, which is exactly why it is being pushed so hard by the vested
interest groups involved and their lackeys. The only thing it may well have
success with is wasting another 10 or 20 or more years. Things are very bad
now in the US, that is undoubtedly true. But they can become so much worse,
and they undoubtedly will if this campaign is successful.

There is ample evidence that this renaming of 'CFS' as 'ME/CFS' will only
make things far worse in the US, if you take the time to look.



In conclusion...

This US so-called 'Fair name' proposal that the name of 'CFS' should be
changed to a variation on the term M.E. - despite the fact that the term is
completely scientifically inaccurate for the vast majority of the patients
involved and that this term has already been TAKEN by a very well-defined
(and scientifically sound) patient group for over 50 years - merely because
it 'sounds a lot more serious and credible' makes a mockery of legitimate
advocacy, and of science, logic and ethics.

It just doesn't make sense to support this 'ME/CFS' name change and all the
reasons given for doing so just don't add up. Why weaken our position so
much for no good reason? - because make no mistake, the unadulterated facts
are a far more compelling true story than any wishy-washy, confusing and
contradictory tales defending the bogus disease category of 'CFS' or trying
to talk up the illogical 'ME/CFS.'

The US 'CFS name change proposal' is nothing more than a political stunt;
designed to appease (justifiably) angry patients and make them feel like
something is being done and that progress is being made finally - but not to
actually effect any real change.

This campaign is about as far from being 'fair' and 'medically and
diagnostically correct' as you can get. Please, don't fall for a very slick
and very well-funded marketing or propaganda campaign designed to keep us
all in this hell even longer. That is all this is. Don't let yourself be the
tool of insurance companies and the CDC and others with vested interests
counter to the interests of patient welfare and science.

If you really want to stop the abuse, neglect and lies, and to get rid of
'CFS' in name and definition, the worst thing you could do is to support
this campaign!

The time for hoping for non-confrontational gradual change, compromising
ourselves for our abusers and trying endlessly to work within the completely
bogus 'CFS' framework ON THEIR TERMS has to be over. 20 years is enough. The
definition of INSANITY is doing the same thing over and over and expecting a
different result.

If you're sitting on the fence, apathetic, happy to compromise on the facts,
claiming to be apolitical, or you're ignorant of the basic facts your
actions are NOT merely having a neutral effect. If you aren't part of the
solution, if you aren't supporting real activism and standing against vested
interest groups and their fake activism ploys, if you haven't educated
yourself about the medical and political and historical reality of the
situation.....then you are part of the problem.

No matter what your intentions are, you're actually helping our abusers to
abuse us - and that's even sicker than any of us are. It just has to stop.



Let's join together to fight as hard as we can against this sham so-called
'Fair name' campaign and stop it succeeding. Let's have some SUCCESS finally
and start doing all the things that these unethical vested interest groups
are hoping we WON'T do, rather than just making their jobs easier for them.

We can't fight hard, many of us are too ill for that, but we can and must
fight smart.

---------
_____

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This Could Be The Most Important Conference In M.E. History!

 The International ME/CFS Conference 2008
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Sub Grouping and Treatments for ME/CFS


The 3rd CPD accredited IiME
International ME/CFS Conference 2008

This will be the third annual biomedical conference on ME/CFS which has been organised and hosted by UK Charity Invest in ME.

The conference will be held on 23rd May 2008 in London

The International ME/CFS Conference in London is presenting several presenters rarely-seen in Europe:

Dr John Chia,
Dr. Martin Lerner,
Dr Judy Mikovits of the WPI
Dr Leonard Jason

We also have:

Dr. Jonathan Kerr,
Professor Malcolm Hooper,
Dr Jean Monro,
Dr Julia Newton
Dr Irving Spurr of the John Richardson Research group.

The 3rd Invest in ME International ME/CFS
Conference - London 23rd May 2008 -
http://tinyurl.com/ytwgzd

The theme for the conference is Sub Grouping and Treatments for ME/CFS.

Download the conference flyer (pdf 111 KB) -
http://tinyurl.com/2lacjd

The conference agenda is at
http://tinyurl.com/yoxz3v

This will be the third annual biomedical conference on ME/CFS which has been organized and hosted by UK Charity Invest in ME.

The conference will be held on 23rd May 2008 in London and builds on the successful biomedical research conferences organized by Invest in ME in
previous years. It will be the culmination of ME Awareness Month 2008.

We have Dr Chia, Dr Lerner and Dr Jason giving long presentations  - not short summaries and they are presenting relevant data from their
recent research.

The conference carries 6 CPD points and the prices discounted for pwme and students (£35),
reduced for professional healthcare staff who are recommended by a local ME support group (£85)
and a competitive rate for professionals (£115).

3rd Invest in ME International ME/CFS Conference - London 23rd May 2008 -
http://tinyurl.com/ytwgzd

Registered charity number 1114035
 

Hospital and Carer Notes for Myalgic Encephalomyelitis

Copyright © by Jodi Bassett, April 2008
Available: http://www.ahummingbirdsguide.com/hospitalandcarernotes.htm

Patients with Myalgic Encephalomyelitis have a variety of specific care
needs, some of which are well-known and common to a variety of other
illnesses and others which are unique to M.E. and with which hospital staff
or carers may be wholly unfamiliar.

Inappropriate care (even if well intentioned) can have serious consequences
for M.E. patients in the short term and the long term, or even permanently.
Knowledge of some of the basics about how M.E. affects the body is vital if
you are in the position of providing care for someone with M.E. in order to
avoid additional unnecessary suffering and disability. This paper provides a
brief overview of this topic for hospital staff and carers.



What is Myalgic Encephalomyelitis? How does it affect the body?

Myalgic Encephalomyelitis is a debilitating neurological (CNS) disease which
has been recognized by the World Health Organization since 1969 as a
distinct organic neurological disorder with the code G.93.3. It can occur in
both epidemic and sporadic forms and over 60 outbreaks of M.E. have been
recorded worldwide since 1934.

M.E. is an acute onset neurological disease initiated by a virus (an
enterovirus) with multi system involvement which is characterized by post
encephalitic damage to the brain stem (hence the name 'Myalgic
Encephalomyelitis'). M.E. is similar in a number of significant ways to
diseases such as multiple sclerosis, Lupus and Polio. At least 25% of M.E.
sufferers are severely affected and are almost completely (or completely)
housebound and/or bedbound. Children as young as five can get M.E., as well
as adults of all ages. M.E. has a similar strike-rate to multiple sclerosis
and is a (potentially fatal) chronic/lifelong illness.

M.E. is primarily neurological, but because the brain controls all vital
bodily functions virtually every bodily system can be affected by M.E.
Although M.E. is primarily neurological it is also known that the vascular
and cardiac dysfunctions seen in M.E. are also the cause of many of the
symptoms and much of the disability associated with M.E. - and that the
well-documented mitochondrial abnormalities present in M.E. significantly
contribute to both of these pathologies. There is also multi-system
involvement of cardiac and skeletal muscle, liver, lymphoid and endocrine
organs in M.E. Some individuals also have damage to skeletal and heart
muscle.

Thus Myalgic Encephalomyelitis symptoms are manifested by virtually all
bodily systems including: cognitive, cardiac, cardiovascular, immunological,
endocrinological, respiratory, hormonal, gastrointestinal and
musculo-skeletal dysfunctions and damage. Myalgic Encephalomyelitis affects
the brain, the heart, almost every bodily system and every cell of the body.
One of the defining features of M.E. is an inability to maintain
homeostasis.

What all of this means in practice is that patients with M.E. have to be
very careful with or limit:

 a.. Physical activity
 b.. Cognitive activity
 c.. Sensory input (exposure to light, noise, movement and vibration), and
 d.. Orthostatic stress (maintaining an upright posture)


The main characteristics of the pattern of symptom exacerbations, relapses
and disease progression (and so on) in M.E. include:

 1.. People with M.E. are unable to maintain their pre-illness activity
levels. This is an acute (sudden) change. M.E. patients can only achieve
50%, or less, of their pre-illness activity levels post-M.E.
 2.. People with M.E. are limited in how physically active they can be but
they are also limited in similar way with; cognitive exertion, sensory input
and orthostatic stress.
 3.. When a person with M.E. is active beyond their individual (physical,
cognitive, sensory or orthostatic) limits this causes a worsening of various
neurological, cognitive, cardiac, cardiovascular, immunological,
endocrinological, respiratory, hormonal, muscular, gastrointestinal and
other symptoms.
 4.. The level of physical activity, cognitive exertion, sensory input or
orthostatic stress needed to cause a significant or severe worsening of
symptoms varies from patient to patient, but is often trivial compared to a
patient's pre-illness tolerances and abilities.
 5.. The severity of M.E. waxes and wanes throughout the hour/day/week and
month.
 6.. The worsening of the illness caused by overexertion often does not
peak until 24 - 48 hours (or more) later.
 7.. The effects of overexertion can accumulate over longer periods of time
and lead to disease progression, or death.
 8.. The activity limits of M.E. are not short term, a gradual (or sudden)
increase in activity levels beyond a patient's individual limits can only
cause relapse, disease progression or death in patients with M.E.
 9.. The symptoms of M.E. do not resolve with rest. The symptoms and
disability of M.E. are not just caused by overexertion, there is also a base
level of illness which can be quite severe even at rest.
 10.. Repeated overexertion can harm your chances for future improvement in
M.E. M.E. patients who are able to avoid overexertion have repeatedly been
shown to have the most positive long-term prognosis.
 11.. Not every M.E. sufferer has 'safe' activity limits within which they
will not exacerbate their illness, this is not the case for the very
severely affected.


In short, if patients with M.E. exceed their individual post-illness
physical, cognitive, orthostatic and other limits, they will experience some
combination of the following:

 a.. A mild-severe (acute or delayed) worsening of one or more symptoms for
hours, days or longer afterward
 b.. A mild-severe (acute or delayed) worsening of virtually every symptom
for hours, days or longer afterward
 c.. A severe (acute or delayed) worsening of the base level of
illness/disability for hours/ weeks/ months or even years afterward, or
 d.. A permanent worsening of the base level of illness/disability (i.e.
permanent physical damage is caused and chances for significant recovery are
adversely affected or taken entirely)


It is also important to be aware that repeated or severe overexertion can
also result in the death of the M.E. patient. (Death in M.E. is most often
caused by heart failure or multiple organ failure.)



So what are the top 10 most obvious things you need to be aware of in
providing care to a M.E. patient?

 a.. Reduce exposure to light
 b.. Reduce exposure to noise
 c.. Reduce/eliminate all non-essential visitors
 d.. Do not encourage patients to be more physically active (or upright
longer) than they can easily tolerate
 e.. Try to schedule demanding tasks for the patient's best time of day as
much as is possible
 f.. Try to reduce the patient's levels of cognitive exertion and sensory
input
 g.. Be aware of any special dietary requirements
 h.. Be aware of the likelihood of negative drug reactions
 i.. Be aware of the need for extensive rest and problems with sleep
 j.. Be aware that these aforementioned relapses can be delayed, and that
they can be very serious and prolonged


1. Reduce exposure to light

-Some patients will require the room to be completely dark (or very close to
it), some will be fine so long as blinds and doors are kept closed, while
other patients will fit somewhere in-between these two extremes.



2. Reduce exposure to noise

-At a minimum, doors and windows must be kept closed to reduce noise. Anyone
entering the room must also take care to reduce or eliminate noise as much
as possible, particularly if a patient has severe noise sensitivity.

-Open wards such as in emergency rooms are a DISASTER for M.E. patients.
They WILL without exception cause months or more of severe relapse in the
severely affected and may also cause a more immediate worsening of the
overall condition and should be avoided if at all possible. (Moderately
affected patients may also relapse severely in an open ward.) Sharing a room
with another patient is also inappropriate for the severely affected M.E.
patient and will also cause a high level of increased pain and suffering and
long term relapse.

-The problem here is not merely pain in the ears and painful or burning
eyes. Even low levels of noise or light (and other sensory input) can cause
a significant and prolonged worsening of the severity of the condition
overall, as well as symptoms including seizures, severe mental confusion and
inability to process even very simple information, episodes of paralysis,
problems with proprioception, balance and so on. Pain levels can quickly
soar to a 10/10 level even with moderate or brief noise or light exposure,
and recovery can be prolonged.


3. Reduce/eliminate all non-essential visitors

-As well as reacting badly to the extra noise and light exposure caused by
visitors, patients can also be made sicker by watching the movement of
someone in the room, and by the extra demands made on the brain when talking
and listening to speech is required.

-In the case of cleaners, these should be cancelled for the duration of the
hospital stay, both for the reasons outlines above, and because many M.E.
patients have sensitivities to many common chemicals used in cleaning
products. (Exposure to these chemicals may merely trigger headaches but in
some cases they can cause extremely severe relapse.)

-It is counter-productive and ill-advised to do hourly 'obs' (pulse and
blood pressure checks etc.) on a patient with severe M.E. as this will soon
cause them to deteriorate in both the short and the long term (or even
permanently).


4. Do not encourage patients to be more physically active (or upright
longer) than their bodies and hearts can easily tolerate

-Even sitting up in bed propped up by a few pillows counts as 'being
upright'
when someone is severely affected, and even 30 seconds or a few minutes of
being fully upright may be long enough to cause problems.

-Physical activity doesn't just include strenuous activity, but any
movement. Even simple movements or stretching of the muscles can cause a
worsening of the condition in the severely affected. Physical tasks may need
to be broken up into many smaller tasks with long rest periods in-between.


5. Try to schedule demanding tasks for the patients best time of day as much
as is possible

-Find out when the patient's best time of day is, and try to fit tasks in to
that window as much as possible.

-Don't expect that a patient will necessarily be able to do the same things
at different times of the day. Some tasks may only be possible at certain
times of day, or after a long period of rest. Making a patient do difficult
tasks at the time of day when they are at their most ill, can not only make
the task much harder or impossible, but also cause a far worse relapse than
if attempted at their most well time of day.


6. Try to reduce the patient's levels of cognitive exertion and sensory
input

-Sensory input includes; light, noise, movement, touch and also vibration.
(The vibration felt when by travelling by car can be excruciating. Even
being lifted from one bed to another can be unbearable.)

-Cognitive exertion includes talking and listening to speech, reading and
writing, watching TV, listening to music and so on. Talking as well as
listening to speech can be very difficult or impossible. Cognitive tasks may
need to be simplified and broken up into many smaller tasks with long rest
periods in-between.

-Some severely affected patients are unable to maintain consciousness for
more than short periods at a time. Some may only be properly conscious for a
few hours a day or less. Sometimes consciousness cannot be maintained for
more than 10 minutes or so consecutively (or less). Trying to force these
patients into consciousness for longer periods can only be
counter-productive, unfortunately. It can quickly make the problem even
worse. (Aside from certain medications and other treatments, what will help
improve this condition most is rest.)

-Some patients will require wheelchairs, but those who also have severe
orthostatic problems (problems with being upright, including sitting) must
not be put in wheelchairs at all and will need to be moved lying flat in bed
(or lying flat on the back seat of a car) at all times.


7. Be aware of any special dietary requirements

-Patients will often be intolerant of a large variety of foods. Some may
also have food allergies.

-There may also be strict requirements - due to the metabolic problems seen
in M.E. - that a patient eat every 2 or 3 hours (or even more often) and
that meals or snacks be high in protein and low in sugar and carbohydrate to
prevent relapse. (High sugar or high carbohydrate foods are often very
poorly tolerated by M.E. patients).

-Some patients will require assistance from a carer to eat (or tube feeding
in severe cases). Problems with swallowing can also make eating or drinking
difficult or impossible for the M.E. patient.


8. Be aware of the likelihood of negative drug reactions

-M.E. patients can react badly to almost every type of drug; particularly
those which act upon the CNS. Some severely affected patients are unable to
tolerate any drugs or over the counter vitamins and other supplements at
all, although many will have found a small number of products that they can
tolerate through much trial and error.

-Negative effects from taking certain medications can range from headaches
and feelings of being poisoned, to a severe worsening of the overall
condition, and so on. The relapse caused by medications can also sometimes
be semi-permanent; the patient does not regain the level of health they had
before they tried the new medication.

-All new medications should be started one at a time and at very low doses
(eg. 1/10th of a standard dose)

- If a M.E. patient is in hospital for surgery, please be aware that certain
precautions must be taken with anaesthesia for the safety and wellbeing of
the patient. Please read: Anaesthesia and M.E.

-Patients may also react badly to the chemicals contained in many personal
care products. If this sensitivity is very severe, visitors must avoid
wearing these products as much as possible before visiting.


9. Be aware of the need for extensive rest and problems with sleep

-Patients with M.E. need a lot of rest, but often find it impossible to get
much sleep or find initiating sleep very difficult, or can only achieve a
very low quality of sleep or sleep only for short periods at a time.

-It may take some patients 4 or more hours to initiate sleep. Being
interrupted with noise or light or visitors during this time may make that
period even longer, or prevent the initiation of sleep altogether. Even low
level noise can sometimes wake M.E. patients who cannot achieve normal deep
sleep and so are very light sleepers.

-Some patients cannot ever sleep for more than a few hours a time post-M.E.,
and so they need to be left alone as much as possible in order that they get
these much needed sleep periods. (Sleep doesn't necessarily help M.E.
symptoms much - often patients feel just as ill or even much worse on waking
than they did before they went to sleep - but missed sleep causes severe
worsening of symptoms/disability. The way it feels to have M.E. and not to
have slept much the night before is indescribably horrific, particularly
when M.E. is severe.)


10. Be aware that these aforementioned relapses can be significantly delayed
(and so they are not always visible on superficial examination), and that
they can be very serious and prolonged - or even fatal in a minority of
cases

-Don't make superficial (i.e. wrong!) judgements of a patient's ability
levels. If you want to know how a patient is feeling or if they can or can't
do a certain task, just ASK THEM!

- People with M.E. are very highly motivated to be as active as they
possibly can be (as anyone would be with so many restriction on their
lives), but they know that if they push themselves to do more than their
bodies can handle, the end result will be a huge LOSS of ability levels, and
a higher level of suffering, and so this is not in their best interests.
(The way people with M.E. get to be as active as possible is by carefully
staying within their post-M.E. limits. This also gives the patient the best
chance for their best possible long-term prognosis.)

-Do take the risk of relapse, and the patient's unwillingness to
unnecessarily become far more ill for days, weeks or longer - very
seriously. Many M.E. patients are suffering in a fairly extreme way already,
and their lives are so painful and limited as to almost be unbearable
already, without any additional worsening of the condition.



In conclusion

Just do your honest best. Achieving all of these tasks perfectly all the
time may not be possible, it's a lot to take in and a lot to think about all
at once, but everything that you can do to reduce the relapse from a
hospital stay will make a real difference and be much appreciated. There is
a huge difference between a 2 month long relapse and a 6 month relapse and
between symptoms worsening during this time to a 7/10 level rather than a
9/10 or 10/10 level... or between a relapse that merely lasts weeks or
months, or is semi-permanent or permanent.

(We appreciate what a hassle it is to accommodate the demands of M.E. only
too well. M.E. is an acute onset disease. We went from being normal and
healthy one day to having to cope with all these limits and disabilities the
next. Or from one hour to the next even. We get it that M.E. is very
unforgiving, overwhelming and just a huge hassle to deal with on just about
every level. We think so too. But this doesn't change the reality,
unfortunately.)

Following this text are some additional forms about specific symptoms and
disabilities etc. that patients may or not want to (or be well enough to)
fill out in order to give you more information about their needs, where this
is appropriate. Thank you for taking the time to read this paper.


-------

Permission is given for these documents to be freely redistributed by e-mail
or in print for any not-for-profit purpose provided that the entire text
(including this notice and the author's attribution) is reproduced in full
and without alteration. Please redistribute this text widely.

Constructive criticism and suggestions welcomed.

If you would like to link to this paper, please do so by using the links to
my site provided rather than a reposting of this text on a third-party
website as only the version on my site has live links and will continue to
be updated.

Available: http://www.ahummingbirdsguide.com/hospitalandcarernotes.htm

To download or print copies of this text in Word or PDF formats, click on
the link above. A large text version is also available.


Best wishes everyone,
Jodi
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--
In all M.E. epidemic or endemic patients the patients represent acute onset
illnesses. The fatigue criteria listed here [in the CFS definitions] can be
found in hundreds of chronic illnesses and clearly defines nothing. Dr Byron
Hyde MD 2006
 

It's time for the U.S. to adopt the Canadian Consensus Document!

Mary Schweitzer
Email:  me-cfs@comcast.net

The U.S. CDC has had two decades to get our disease right.  They have not.  The barrier is not scientific or medical, but political.  The Canadian Consensus Document for ME/CFS can begin showing physicians how to treat patients right now.  It addresses the complexity of the illness, offers tests and treatments, and contains a medical bibliography from refereed professional journals.  The authors, as a group, have treated over 20,000 patients. 

It's time for the U.S. to adopt the Canadian Consensus Document (Journal of CFS, 2003). You can find a summary pamphlet at:
http://www.mefmaction.net/documents/me_overview.pdf

If you want to join the movement for the U.S. to adopt the Canadian Consensus Document, just click here to get started:
     http://www.cfids-me.org/index.html#consensus

The petition, in downloadable form, is here:
     http://www.cfids-me.org/petition.html

Since Congress pays more attention to petitions with real signatures on them, you can copy and print out a petition and then send it back to me at this address (even if there's only one signature):
     Consensus Petition
     P.O. Box 189
     Elk Mills, MD 21920

Signed petitions can also be FAXED.  Write me at me-cfs@comcast.net for a number.

If downloading and signing a petition is too difficult, it's okay to copy the petition into an email, add "I agree to this" and "sign" your name.  Then send it back to me at:
     intlconsensus@comcast.net

Be sure to email your Congressman and Senators (the ones from your jurisdiction; they don't generally take emails from outside their jurisdiction) - a sample email letter and instructions for finding their addresses are here.  (You can also FAX them.)
     http://www.cfids-me.org/petitionemail.html

And if you want to compare the Canadian Consensus Document with the CDC's own set of pamphlets, the "CFS Toolkit for Professionals", go here:
     http://www.cfids-me.org/petitiondrive.html

Why the U.S. needs the Canadian Consensus Document:


Twenty years ago, the U.S. CDC concluded that the
disease breakout at Incline Village, NV, and other
similar outbreaks around the nation, was not
Epidemic Neuromyesthenia as Myalgic
Encephalomyelitis, or M.E., was called in the U.S.),
but a new disease entity entirely.

CDC epidemiologist Ian Holmes and some members
of a committee that had met the previous year on
the subject published an article naming the new
disease chronic fatigue syndrome (CFS), insisted it
was not chronic Epstein-Barr Virus (mono or
glandular fever), and gave it a definition that looked
a lot more like EBV than the disease still known as
M.E. in the UK.


[The definition of M.E. from Dr. Melvin Ramsay s
textbook on the disease can be found here:
<http://www.cfids-me.org/ramsay86.html>]


Two years later, in Europe, the World Health
Organization (WHO) published its tenth revision of
the International Classification of Disease (ICD-10).
By the early 2000 s, every major nation had adopted
ICD-10, except the U.S., which is still on ICD-9.  In
ICD-10, both M.E. and CFS are coded together at
G93.3 in the chapter on neurological diseases.


After Canada adopted ICD-10, the National ME/FM
Action Network of Canada brought together a
committee for a consensus document to help
physicians diagnosis and treat the disease ME/CFS.
As a whole, the clinicians in the group had treated
over 20,000 patients.  The Canadian Consensus
Document that resulted was published in the Journal
of CFS in 2003.  A summary pamphlet is available
online:
http://www.mefmaction.net/documents/me_overview.pdf.


Two years ago, the CDC went all-out on a publicity
campaign that (finally) stated the disease was
significant and debilitating. Some of us thought that
perhaps they were going to join the 21st Century.
But the CDC went in a different direction.

Using a prevalence estimate closer to that of
Britain's Simon Wessely than the 1999 estimate by
U.S. researcher Leonard Jason, they even suggested
that there might be as many as four million victims
in the U.S. alone, quite a jump from their estimate
of 500,000 at an AACFS conference in Boston, 1998.

An increase in eight-fold in eight years?  Either this
is a much more contagious illness than CDC will
admit or there is something wrong with the way the
CDC goes about diagnosing the illness in the first
place.

Along with the new definition came a new set of
pamphlets for physicians:  the CDC s CFS Toolkit for
Professionals,  available on the web at:
http://www.cdc.gov/cfs/toolkit.htm


It was pretty and respectful, but in the end had little
practical information to offer physicians or patients.
According to the CDC, there is no diagnostic
laboratory test or biomarker for CFS. [CFS Overview].


They offered as they have offered since the early
1990s antidepressants and pain killers. But now they
also added the solution British psychiatrists offer
overseas. There is an entire pamphlet on CBT
(cognitive behavior therapy).

CBT is a type of behavioral therapy that is used in
everything from drug addiction to major mental
disorders. The CDC is not suggesting simple
counseling to help the patient accept his or her
limitations or live within one s energy envelope to
the contrary, the program assumes the patient
accepts a higher degree of limitation than really
exists, and needs to be taught or shown how to try
to do more.

The CDC s belief that improvement is in the
willpower of the patient, if the patient only knew
how to use it, can be found in the final sentence of
the pamphlet on Managing Activity:

A subset of people with CFS are so severely ill that
they are largely housebound or bedbound, Hand
stretches and picking up and grasping objects may
be all that can be managed at first. Gradually
increasing activity to the point patients can handle
essential activities of daily living  getting up,
personal hygiene and dressing is the next step.
- CFS Toolkit, Managing Activity


It apparently has not occurred to the CDC that these
patients might be so severely afflicted because they
are beset by one or more viruses or other microbes,
or have an abnormal immune system that has left
them vulnerable to diseases.

Who in their right mind would suggest a program of
graduated exercise for a person who had viral
encephalitis?  And yet, that is what many patients
with HHV-6 have. The problem is that the CDC does
not accept the possibility that CFS patients are ill
with HHV-6, or enteroviruses (coxsackie viruses,
polio viruses), or mycoplasma, or environmental
toxins such as black mold. If the solution is
behavioral, we must assume, so must be the
problem.


In summary, no matter what the CDC statements
imply, when it comes to actually dealing with
patients, the treatments are almost entirely
psychological:  antidepressants, Cognitive Behavior
Therapy, and Graded Exercise Therapy.  The only
non-psychological treatment offered is painkillers.

With fewer and fewer doctors able to offer anything
of use to their patients disabled with ME or CFS in
the United States, we cannot wait for a solution far
in the future. There already exists a set of criteria for
diagnosing, testing, and treating patients with this
disease:  The Canadian Consensus Document for
ME/CFS.

The bibliography from the Canadian Consensus
Document makes it clear that the barrier to
treatment and care for patients in the U.S. is not
scientific:  it is political.  So must the remedy be.


Join the movement to Adopt the Canadian
Consensus Document in the U.S.  To begin,
go to:

http://www.cfids-me.org/index.html#consensus



Mary Schweitzer

Email:  me-cfs@comcast.net
 

No thanks to ANY government funding,

a cure for M.E. is one year away, says Kerr:

http://hk.youtube.com/watch?v=hkGq0BH6AHw

A. Martin Lerner

April 3, 2008

Wessely's Way: Rhetoric or Reason?
~~~~~~~~~~~~~~~~~~~~~~


Malcolm Hooper      
Margaret Williams         
             
malcolm.hooper@virgin.net 

22nd March 2008



On 22nd March 2008 the Financial Times carried an 
item by Glasgow GP Dr Margaret McCartney ("If it's in 
the mind, it's still the real thing") in which she 
stated that neither ME – to which she referred as 
"myalgic encephalitis" instead of the correct term 
myalgic encephalomyelitis –  nor fibromyalgia (FM), 
nor repetitive strain injury (RSI) nor irritable bowel 
syndrome (IBS) "has a clear pathological or 
biochemical abnormality".  She went on to confirm: 
"It's certainly true that many doctors see these kinds 
of symptoms as an irritating and time-consuming 
diversion from 'real' pathology".

Unfortunately for ME patients in the UK, such 
comments are nothing new.

The person whose work has had most impact on their 
lives is psychiatrist Professor Simon Wessely, whose  
twenty-year published record on ME patients 
underpins such ill-informed comments, for example:
  
• "The description given at the Mayo Clinic remains 
accurate: 'The average doctor will see they are 
neurotic and he will often be disgusted with them' " 
(In: Psychological Disorders in General Medical 
Settings, ed: Sartorius et al; Hogrefe & Huber, 1990)

• "Blaming symptoms on a viral infection conveys 
certain advantages, irrespective of its validity (and) 
is beneficial to self-esteem by protecting the 
individual from guilt and blame" (In: Post-Viral 
Fatigue Syndrome. ed: James Mowbray and Rachel 
Jenkins.  John Wiley & Sons, 1991)

• "It seems that ME sufferers prefer to feel they have 
a 'real' disease – it is better for their self-esteem" 
(Pfizer Invicta Pharmaceuticals 1992:4-5)

• "Patients with inexplicable physical symptoms are 
generally viewed as an unavoidable, untreatable and 
unattractive burden" (Brit J Hosp Med 
1994:51:8:421-427)

• "Somatisation sufferers consume vast amounts of 
health resources for little benefit" (Clin Exp Allergy 
1995:25:503-514)

•  "The term ME may mislead patients into believing 
they have a serious and specific pathological 
process. Several studies suggest that poor outcome 
is associated with social, psychological and cultural 
factors" (Joint Royal Colleges Report on CFS, October 
1996)

• "ME has never been fully accepted as a real 
condition, says Simon Wessely"  (The Guardian, 21st 
April 1998).  Note that the World Health 
Organisation fully accepted ME as a real condition in 
1969 and continues to do so

•  "It is only human for doctors to view the public as 
foolish, uncomprehending, hysterical or malingering" 
(BMJ 2003:326:595-597)

• "Science is indeed socially controlled, and so it 
should be" (The Guardian, 1st March 2003)

• "Functional somatic syndromes include chronic 
fatigue syndrome"  (Rev Bras Psiquiatr 2005:27:3).  
This is noteworthy, given that Wessely is on public 
record as stating: "I don't classify CFS as a 
somatoform disorder" (Wessely Answers Questions. 
10th April 2002: CAME).


From the above quotations, it seems there may be 
an explanation why doctors such as Dr McCartney are 
so misinformed.

However, not only does it seem that Dr McCartney 
has been careless over her terminology but it also 
seems she has not kept abreast of the medical 
science that has revealed the pathological and 
biochemical abnormalities now known to underpin 
these disorders. 

Moreover, she claims that the recommendation for 
cognitive behavioural therapy (CBT) in the NICE 
Guideline on "CFS/ME" does not imply a psychological 
cause because "behavioural treatments can be used 
to improve the quality of life of people who have 
diabetes, asthma, or cancer". This is undoubtedly so, 
but the key differences that seem to have been 
overlooked by Dr McCartney are that in those 
disorders, appropriate investigations and effective 
interventions are not ignored or proscribed and, 
importantly, behavioural therapy is an adjunctive and 
not the primary – indeed the sole – management 
recommendation as it is in ME/CFS.

Dr McCartney harks back to the much-criticised 1999 
paper by psychiatrists Simon Wessely and Michael 
Sharpe in The Lancet ("Functional somatic 
syndromes: one or many?": Lancet 
1999:354:936-939) and she quotes with seeming 
approval Professors Wessely and Sharpe: "The 
existence of specific somatic syndromes is largely an 
artefact of medical specialisation".

Apart from the Lancet article to which she refers, Dr 
McCartney will doubtless be aware of Wessely's 
views on ME/CFS, fibromyalgia (FM), Gulf War 
Syndrome (GWS), the Camelford water poisoning 
catastrophy, the effects of chronic low-dose 
organophosphate (OP) poisoning and the adverse 
effects of mobile phones, since Wessely has not 
been reticent in publicising his views. He is certain 
that such disorders do not exist and that people who 
claim to suffer from them are deluding themselves 
because, he says, they are actually suffering from a 
mental (somatisation) disorder which, to quote Dr 
McCartney, is "the phenomenon of translating mental 
distress into physical symptoms". Wessely is certain 
that such symptoms are merely "the modern 
preoccupation with the state of our environment" and 
that they occur in "a few individuals with pre-existing 
somatisation disorders (and are) then diverted to fall 
in line with the prevailing ("disease"). Future 
investigations of environmental incidents should 
recall that social and cultural factors are as 
important as medical ones"  (The Legend of 
Camelford.  Anthony S David and Simon C Wessely.  
Journal of Psychosomatic Research 1995:39:1:1-9 --- 
see below).  

The denial of the very existence of such disorders 
has become Wessely's trade-mark. 

It was captured in the New Statesman almost a 
decade ago when in February 1999 Ziauddin Sardar 
wrote "Ill-defined notions": "When is someone sick, 
really sick?  Who decides?  By what criteria?  The 
only thing that is certain is that you are only ill when 
someone says you are ill.  Consider syndromes.  
Once this was a name for a collection of symptoms 
for which no clear cause had yet been found.  Now it 
stands for a bunch of symptoms lacking even the 
security of certainty that they are actually there.  
Most notorious is 'chronic fatigue syndrome', known 
as 'ME'.  Horror stories abound of people whom the 
psychiatric experts considered just to be faking. The 
same can be said of Gulf War syndrome. Even though 
400 veterans have actually died and some 5,000 are 
suffering from illnesses related to Gulf War 
syndrome, the syndrome does not officially exist. 
Wessely has been arguing that ME is a largely 
self-induced ailment that can be cured by the 
exercise programme on offer at his clinic.  Recently 
he published the results of 'the most definitive 
study' of Gulf War syndrome in the Lancet.  It 
concluded – surprise, surprise – that there is no such 
thing as Gulf War syndrome.  Clearly, Wessely is a 
follower of Groucho Marx: 'Whatever it is, I deny it' ".

These are profoundly serious issues in which 
Professor Wessely seems to have been shown to be 
completely wrong, yet no-where has it been possible 
to find a retraction of, let alone an apology for, the 
incalculable damage that many people believe his 
misinformed opinions and policies have caused. 

Although psychiatric disorders are diagnosed on 
opinion and not on a definitive diagnostic test, 
Professor Wessely demands "evidence-based 
medicine" supported by a definitive test and specific 
biomarkers before he will accept the reality of 
ME/CFS.  Whilst there is as yet no specific diagnostic 
test, there is an abundance of biomarkers which 
support the diagnosis, but Professor Wessely 
continues his determined and sustained denial and 
dismissal of this scientific evidence that clearly 
proves him to be wrong.

As Philip Steer, Emeritus Professor, Imperial College, 
London, asks in the current issue of the British 
Medical Journal: "Could strict adherence to 
evidence-based practice be harmful to patients?" and 
he notes that: "'Conviction politicians' may be 
popular, but conviction doctors are potentially 
dangerous" (BMJ 2008:336:673).

Of even more concern is the fact that, despite having 
been shown to be so wrong about, for example, the 
Camelford disaster, Gulf War syndrome, the dangers 
of mobile phones, the nature of IBS, the nature of 
fibromyalgia and the nature of ME/CFS (for evidence, 
see below), Professor Wessely's influence over 
Government policy continues unabated. 

The influence of his team in the NICE Guideline on 
"CFS/ME" featured in the 2007 R&D (Research & 
Development) annual reports by NHS organisations in 
England, in which the South London and Maudsley 
NHS Trust stated in section 2A ("Examples of impact 
on health and social care"): "We begin by 
summarising key achievements and follow with six 
examples that illustrate the impact of our research".

 The section on "Chronic Fatigue Syndrome" boasts: 
"In October 2006 NHS Plus published Occupational 
Aspects of the Management of Chronic Fatigue 
Syndrome: a National Guideline. It was accompanied 
by two additional leaflets, one for Health Care 
professionals and one for employers. This report was 
heavily influenced by research carried out at our 
Chronic Fatigue (sic) Unit. The NICE CFS/ME 
guideline also includes priority recommendations to 
which our research, led by Trudie Chalder and 
colleagues, has contributed: 'When the adult or 
child's main goal is to return to normal activities, 
then the therapies of first choice should be CBT or 
GET because there is good evidence of benefit for 
this condition in mild to moderately affected adults 
and some evidence in mild to moderately affected 
children'. As a result of our research we have 
developed our chronic fatigue syndrome service to 
include treatment at home. In addition we now offer 
telephone treatment routinely after demonstrating 
its effectiveness". 


ME/CFS

On 18th March 2008 The Daily Telegraph carried an 
item entitled "ME: 'Invisible disease' is now easier to 
read" by Bob Ward, who reported on the work of Dr 
Jonathan Kerr of St George's University of London 
(published in the Journal of Clinical Pathology and to 
be presented at an ME Research UK [MERUK] 
biomedical conference at the University of Cambridge 
on 6th May 2008). The article pointed out that Kerr's 
team has identified 88 genes that produce different 
levels of proteins and other molecules in ME/CFS 
compared with controls.  In 2005 Kerr carried out a 
complex analysis and found that patients with 
ME/CFS can be divided into seven clinical sub-types 
according to specific gene combinations and the 
severity of symptoms.  The most severely affected 
patients had 71of the 88 gene abnormalities.  In his 
follow-up paper to which the Telegraph article 
referred, Kerr's earlier work was confirmed: (J Clin 
Pathol 2007: doi:10.1136/jcp.2007.053553):  "In this 
study, for each CFS/ME subtype, we determined 
those genes whose expression differed significantly 
from that of normal blood donors.  Genomic analysis 
was then related to clinical data for each CFS/ME 
subtype. Genomic analysis revealed some common 
(neurological, haematological, cancer) and some 
distinct (metabolic, endocrine, cardiovascular, 
immunological, inflammatory) disease associations 
among the subtypes. It is particularly interesting 
that in these genomically derived subtypes, there 
were distinct clinical syndromes, as would be 
expected in a disease with a biological basis".

Other researchers have noted that patients with 
ME/CFS can have "a genetic predisposition to an 
immunomodulatory response of an inflammatory 
nature, probably secondary to one or more 
environmental insults" (N Carlo-Stella et al. Clin Exp 
Rheumatol 2006:24(2):179-182).

One would think that such evidence would lead to a 
change in attitude by Wessely School psychiatrists 
towards ME/CFS, but as has been noted countless 
times by many people, nothing seems to stop 
Wessely's influence on Government policy: a current 
example is the forthcoming conference on "CFS" to 
be held at The Royal Society of Medicine on 28th 
April 2008, about which Dr Derek Enlander from New 
York wrote on 21st March 2008 to the Editor of the 
Daily Telegraph:  "Your article on gene research in 
ME was a breath of fresh air in the stale atmosphere 
of UK Government funded research.  Over the years 
it has been shown to be a physical disease. The 
cause is obscure (and) this obscurity has been 
masterfully used by psychiatrists to claim that the 
disease is a manifestation of a psychiatric condition.  
What arrogance! The Royal Society of Medicine plays 
to this theme by running a conference on ME/CFS.  
The speakers are dwelling mainly on psychiatry – 
rather peculiar for a Society of Medicine. As far as I 
know the RSM has not noted these physical aspects.  
The Government through NICE continues to waste 
money on proven bad methods of treatment which, in 
a large number of cases, cause relapse.  Surely, by 
now, the Government should be embarrassed".

That ME/CFS is not a somatisation disorder is now 
beyond doubt because there is overwhelming 
evidence confirming it to be a multi-system organic 
disorder in which there is disruption of virtually every 
system in the body (for evidence, see 
http://www.meresearch.org.uk/information/researchdbase/index.html 
and http://www.meactionuk.org.uk -- between them, 
these sites contain over 3,000 published papers 
demonstrating that ME/CFS is not a psychiatric 
disorder). The item published on 18th March 2008 in 
The Daily Telegraph to which Dr Enlander referred 
above was indeed a breath of fresh air. As noted by 
Dr John Greensmith in his response: "There has been 
ample research evidence for M.E. as a discrete illness 
since 1956 and it has been endorsed by the WHO as 
a neurological illness since 1969, yet the 
Government's advisers, who are dominated by 
psychiatrists, have tampered with the M.E. entry in 
the British version of the WHO handbook (though it 
remains untouched in other countries) and have 
recommended two treatments on the basis of 
questionable research evidence, one of which, 
cognitive behavioural therapy (CBT) has no lasting 
benefit for people with M.E. and the other, graded 
exercise therapy (GET) may leave some patients 
irrecoverably worse.  They say that they do not 
believe that M.E. is 'all in the mind' (but) since most 
patients are treated by psychiatrists, using 
treatments developed for psychiatric illnesses, most 
often in psychiatric units of hospitals, it is hard to 
think how otherwise they would treat them if they 
did believe it was of psychiatric origin.  The situation 
does not look set to change. Indeed, a Royal Society 
of Medicine conference to be held on 28th April 2008, 
to which selected delegates have been invited and 
others told that they should not attend, is expected 
to recommend that this unproven service should be 
expanded" (drjohngreensmith@mefreeforall.org ).

Nancy Klimas, Professor of Medicine at the University 
of Miami and an international expert on ME/CFS, 
affirmed: "Our patients are terribly ill, 
misunderstood, and suffer at the hands of a poorly 
informed medical establishment and society"  (AACFS 
In-coming Presidential Address:  Co-Cure 21st March 
2005).

In January 2008, Klimas went on record: "As an 
immunologist, I once would have said (ME)CFS is 
clearly an immune dysfunction state, while an 
endocrinologist would have called attention to the 
adrenal gland irregularities, and a specialist in the 
autonomic nervous system would be convinced 
(ME)CFS is all about blood pressure abnormalities. 
Given what we've discovered about the illness, I now 
tell people (ME)CFS is all of these things.  We know 
that (ME)CFS has identifiable biologic underpinnings 
because we now have research documenting a 
number of pathophysiological processes involving the 
brain, the immune system, the neuroendocrine 
system and the autonomic nervous system"  
(Historical perspective.  Nancy Klimas. In:  "Defining 
Moments – 20 years of making CFS History", 
published by the CFIDS Association of America, 
January 2008). 

It is regrettable that such pronouncements do not 
receive anything like the publicity that Professor 
Wessely's pronouncements receive.

The latest evidence demonstrating the key finding 
that there is a low-grade inflammatory response in 
ME/CFS was published on 21st March 2008 in Clinical 
Science (VA Spence et al: Clinical Science 
2008:114(8):561-566); this important paper adds to 
the existing body of scientific knowledge about 
ME/CFS that shows excessive cytokine production, 
disruption of the HPA axis and dysfunction of the 
autonomic nervous system, none of which can 
credibly be attributed to a behavioural disorder that 
is amenable to psychotherapy.

Professor Wessely and other members of the 
"Wessely School" simply ignore all this scientific 
evidence that proves them wrong and they remain 
committed to their own unshakable beliefs, which 
many people believe have resulted in unnecessary 
suffering of innumerable sick people.  


Fibromyalgia

Just as he dismisses ME/CFS as a somatisation 
disorder, Professor Wessely likewise asserts that 
fibromyalgia (FM) also is a somatisation disorder – 
indeed, he asserts that it is the same somatisation 
disorder (Lancet 1999:354:936-939).  He clearly 
believes this, but where is his evidence?  There is 
none.

The scientific evidence, especially the more recent 
evidence, continues to mount and it does not 
support Professor Wessely's beliefs.  He, however, 
rejects this substantial body of evidence that he is 
wrong.

The WHO classifies FM as a discrete disorder in 
ICD-10 at M79 under soft tissue disorders, not as a 
somatisation disorder.  

The Mayo Clinic recently published "Fibromyalgia 
myths: The truth about 9 common myths", which 
stated "Fibromyalgia is a specific diagnosis"  
(http://www.mayoclinic.com/health/fibromyalgia/AR00056 
). 

Illustrations of research findings in FM include the 
following:

In 1997 it was shown that levels of somatomedin C 
are lower in FM patients (AL Bennett et al. J Psychiat 
Res 1997:31:1:91-96).

In 1998 researchers showed that levels of Substance 
P are elevated in FM patients (Evengaard B et al. 
Pain 1998:78:2:153-155).

In 2003 it was shown that endothelin-1 is raised in 
FM patients (Pache M et al. Rheumatology 
2003:42:493-494).

Research in 2005 indicated that FM is the result of 
internal biochemical imbalances that cause the 
physical symptoms (Co-Cure MED: 2nd January 2005: 
Fibromyalgia: new insights into a Misunderstood 
Ailment).

Different research in 2005 found elevated 
N(epsilon)-carboxymethyllysine levels in muscular 
tissue and in serum of patients with FM, with more 
intensive staining in the interstitial connective tissue 
of fibromyalgic muscles (Ruster M et al. Scand J 
Rheumatol 2005:34(6):460-463).

Again in 2005, more serious abnormalities were 
demonstrated by histologic studies particularly on 
electron microscopy, revealing disorganisation of Z 
bands and abnormalities in the number and shape of 
mitochondria: biochemical studies and P31 magnetic 
resonance spectroscopy showed inconstant 
abnormalities of ATP and phosphocreatine levels.  
The authors noted that "Mitochondrial abnormalities, 
reduced capillary circulation and thickened capillary 
endothelium may result in decreased availability of 
oxygen and impaired oxidative phosphorylation as 
well as ATP synthesis" and commented that these 
abnormalities do not seem to be the consequences 
of de-conditioning (Le Goff P.  Joint Bone Spine 
2005, November 9th).

In 2006, an important review in the Annals of the 
New York Academy of Sciences (Sarzi-Puttini P et al, 
Ann N Y Accad Sci 2006:1069:109-117) demonstrated 
orthostatic intolerance in FM, suggesting underlying 
abnormalities in cardiovascular neural regulation: 
"Research suggests that various components of the 
central nervous system are involved, including the 
HPA axis, pain-processing pathways, and the 
autonomic nervous system".

Again in 2006, research showed a greater prevalence 
of FM in HTLV-1 (human T cell lymphotrophic virus) 
infected individuals, suggesting that FM may be 
associated with this viral infection (Cruz BA et al: J 
Rheumatol: 2006:33(11):2300-2303).

In 2007, researchers at Yale University School of 
Medicine showed muscle hypoperfusion induced by 
regional vasomotor dysregulation in FM, noting that 
this vasoconstriction in muscle would lead to 
low-level ischaemia and its metabolic sequelae (Katz 
DL et al. Med Hypotheses 2007: March 19th).

More research into FM in 2007 demonstrated bladder 
symptomatology (Brand K et al. Clin Rheumatol 
2007: May 3rd).

Further research in 2007 showed that autoimmune 
thyroiditis is present in an elevated percentage of FM 
patients and that patients with thyroid autoimmunity 
showed a higher percentage of dry eyes, burning or 
pain with urination, allodynia, blurred vision and sore 
throat (Bazzichi L et al. Clin Rheumatol 2007: May 
9th).

In 2007, Bazzichi et al also showed evidence of 
abnormal levels of cytokines in FM: "The higher 
levels of cytokines found in FM patients suggest the 
presence of an inflammatory response system (IRS) 
and highlight a parallel between the clinical 
symptoms and biochemical data"  (Clin Exp 
Rheumatol 2007:25(2):225-230).

Another paper in 2007 revealed a conspicuous 
pattern of altered brain morphology, suggesting that 
FM is associated with structural changes in the 
central nervous system of patients (Schmidt-Wilcke T 
et al.  Pain: 2007: June 21st).

In January 2008 researchers provided compelling 
evidence of a demyelinating polyneuropathy in FM, 
with electrodiagnostic  (EDX) evidence of both 
polyneuropathy and demyelination.  The authors 
concluded that 33% of FM patients have clinical and 
EDX findings of chronic inflammatory demyelinating 
polyneuropathy / CIDP. (Caro XJ et al.  
Rheumatology (Oxford) 2008:47(2):208-211).

In February 2008 researchers from McGill University, 
Montreal, Canada, presented evidence that 
"neurotransmitter studies show that FM patients 
have abnormalities in dopaminergic, opioidergic, and 
serotonergic systems" and that "studies of brain 
anatomy show structural differences between the 
brains of FM patients and healthy individuals" 
(Schweinhardt P et al. Neuroscientist 2008: February 
12th).

Also in 2008, in a blinded study, skin biopsy samples 
showed electron microscopic evidence of unusual 
patterns of unmyelinated nerve fibres as well as 
associated Schwann cells, which the researchers 
considered may contribute to the lower pain 
threshold seen in FM patients (Kim SH et al.  Clin 
Rheumatol 2008:27(3):407-411).

In a study published in March 2008, US researchers 
noted that previously, functional magnetic resonance 
imaging (fMRI) had shown that the insula displays 
augmented activity in FM, which means that neurons 
in FM patients are more active in this part of the 
brain. This linked to their own findings that pain 
decreased when levels of the brain molecule 
glutamate went down, glutamate being a 
neurotransmitter that conveys information between 
neurons in the nervous system (Clauw D et al.  
Arthritis and Rheumatism 2008:58:3).

Such research findings cannot rationally be 
dismissed, yet Wessely et al still insist that 
fibromyalgia is a somatisation disorder and they 
have deliberately included FM patients in the Medical 
Research Council's behavioural intervention trials on 
patients with "CFS/ME" in which "Wessely School" 
psychiatrists are the investigators, a diagnostic 
inaccuracy that would seem to make a mockery of 
the MRC's claim that it funds only studies of the 
highest scientific calibre, especially as in July 2004 a 
Minister of State (Dr Stephen Ladyman MP) made it 
known at a House of Commons All Party 
Parliamentary Group on FM that doctors were to be 
offered financial incentives to persuade patients with 
fibromyalgia to enter these MRC trials.


Gulf War Syndrome

From even before 1996, the time when he and fellow 
psychiatrist Anthony David were awarded $1million 
(£666,000) by the US Department of Defence in a 
Pentagon-funded study to investigate Gulf War 
illness  among UK veterans (BMJ1997:314:95), 
Wessely continually denied the existence of Gulf War 
Syndrome. 

In their official report on GWS published in the 
Lancet in January 1999 (Catherine Unwin et al. 
Lancet 1999:353:169-178), Wessely et al concluded 
that there is no such thing as Gulf War Syndrome 
and that the pathway of such illness could be the 
"perceived" risk of chemical attack, and that it was 
this "psychological" effect that might be contributing 
to the ill-health of Gulf War veterans.

In October that same year a study carried out by the 
well-respected Rand Corporation for the US Defense 
Department did not support Wessely's conclusions.  
As a result of this two-year study by Dr Beatrice 
Golomb, the Penatgon changed its policy and 
admitted that there could be a link with GWS and 
the use of pyridostigmine bromide (PB, or anti-nerve 
gas) tablets which the UK, US and Canadian troops 
were forced to take during the first (1991) conflict in 
the Gulf.

In his testimony to the Gulf War Illnesses Public 
Inquiry held at the Palace of Westminster in 2004 
and chaired by The Rt Hon The Lord Lloyd of Berwick, 
Robert Haley, Professor and Director of the Division 
of Epidemiology and Preventative Medicine at the 
University of Texas South Western Medical Centre, 
Dallas, an acknowledged world authority on the 
nature and causes of neurological disease in Gulf 
War veterans, said of Wessely et al: 

"Studies using nonspecific definitions of Gulf War 
neurological syndrome are biased toward finding 
negative results.  Early in the history of Gulf War 
illness research, around 1993, a decision was made 
in the government to the effect that 'there is no Gulf 
War syndrome', and this led to pressure on 
researchers who wanted government funding not to 
use a case definition of the illness in their 
research.   Without at least a provisional case 
definition, however, it is virtually impossible to 
design studies that will elucidate the nature of the 
illness, or illnesses, and connect them with 
causes.   

"The most important example of the unproductive 
use of a nonspecific case definition concocted was 
the series of studies from the Kings College London 
group.  In place of a case definition describing the 
disease that veterans were complaining of, they 
defined Gulf War illness as having a score of greater 
than 72.2 on the SF-36 questionnaire, which 
measures functional impairment regardless of the 
cause.  This case definition essentially counted 
veterans as having Gulf War illness if they had any 
condition that caused them to feel bad.  
Consequently, many veterans with diseases other 
than Gulf War neurological syndrome that made 
them feel bad were mistakenly counted as cases, 
and conversely, many with typical symptoms of Gulf 
War neurological syndrome but who were not very ill 
with it were not counted as cases.  This severe 
degree of bidirectional misclassification has caused 
all studies from the Kings College London group to 
reach spuriously negative conclusions". 

Professor Haley also provided evidence (against 
Professor Wessely's studies) that: "Studies using 
nonspecific measures of nerve agent exposure are 
biased toward finding negative results".  

Wessely told the Inquiry: "The Gulf war syndrome 
debate is really just of academic importance" but 
Lord Lloyd (a former law lord) said there was "every 
reason" to accept the existence of a "Gulf War 
Syndrome"  (The Independent Public Inquiry on Gulf 
War Illness. Report published on 17th November 
2004).

In March 2008, The US National Academy of Sciences 
published another report by Dr Beatrice Golomb (of 
the University of California, San Diego, and Chief 
Scientist to the US Congress-appointed Committee 
on Gulf War Illnesses); this report found evidence 
linking the symptoms experienced by the Gulf War 
Veterans – including muscle and joint pain, rashes 
and breathing problems – to a particular class of 
chemicals, specifically to the anti-nerve gas agent 
given to the troops, to the pesticides used to control 
sand-flies, and to the nerve gas sarin.  Dr Golomb 
told Reuters that:  "Convergent evidence now 
strongly links a class of chemicals – 
acetylcholinesterase  inhibitors – to illness in Gulf 
War veterans".  She said that a lot of attention had 
been given to psychological factors, but that 
"psychological stressors are inadequate to account 
for the excess illness seen"  
( http://www.bbc.co.uk/1/hi/health/7288902.stm ).  
The Proceedings of the National Academy of Sciences 
is specific: "Increasing evidence suggests excessive 
illness in Persian Gulf War veterans can be explained 
partly by exposure to organophosphate and 
carbamate acetylcholinesterase inhibitors, including 
pyridostigmine bromide (PB), pesticides and nerve 
agents (and) this exposure may be causally linked to 
excess health problems in Gulf War veterans" (Proc. 
Natl. Acad. Sci. USA, 10.1073/pnas.0711986105).

This study was reported in The Economist (War of 
nerves. 13th March 2008), which also reported 
Professor Wessely's comments about these 
irrefutable findings: "This may encourage sick 
veterans that a cause of their suffering could finally 
be found, but Simon Wessely, a professor at the 
Institute of Psychiatry's centre for military health 
research, is sceptical.  He says that the review is 'an 
opinion piece that continues a line of argument Dr 
Golomb has put forwards for some time'". 

In a response to The Economist, Malcolm Hooper 
(Emeritus Professor of Medicinal Chemistry and Chief 
Scientific Adviser to the UK Gulf War Veterans) 
wrote: "The casual and dismissive comments by 
Professor Simon Wessely about the recent review by 
Professor Beatrice Golomb that makes clear the link 
with chemicals used in the first Gulf War are 
unacceptable.  (They are) indicative of the resistance 
to extensive American research studies that have 
identified serious damage to the brains of sick 
soldiers, major heart and cardiovascular disorders, as 
well as immune, respiratory and neuromuscular 
disorders, including an excess of motor neurone 
disease.  Despite no official funding, UK research has 
found excess osteoporosis and severe endocrine 
damage in UK veterans.  The neglect of these 
veterans is shameful.  Golomb's paper challenges us 
to seek and speak the truth and to act accordingly".

It seems strange that Professor Wessely should 
reject the science reported in the Proceedings of the 
New York Academy of Sciences (which has an 
impressive impact factor rating) in favour of his own 
speculation.

Moreover, it seems that he fails to see that he is 
doing exactly that of which he accuses Dr Golomb  – 
i.e. his own view is nothing more than "an opinion 
piece that continues a line of argument" that he has 
"put forward for some time". The big difference that 
Professor Wessely seems to have missed -- either by 
accident or by design -- is that Dr Golomb has got 
actual evidence to support her findings, whereas he 
has none.


Toxicity of organophosphate and 
organochlorine compounds

Professor Wessely has a long published record of 
rejecting the validity of environmental illness (for 
example: BMJ 1993:307:747-748; Clin & Exp Allergy 
1995:25:503-514), particularly illness arising from  
exposure to chemicals, and he has apparently 
commented with seeming satisfaction that in the 
modern world it is impossible to avoid daily contact 
with a multiplicity of chemicals.

In numerous publications, he has seemed to 
disparage and denigrate patients with symptoms of 
environmental illness, repeating the same message 
time and again, both in medical journals and in the 
media: 

"These total allergy syndromes are akin to 
culture-bound syndromes afflicting modern developed 
societies where sufferers from unexplained 
symptoms no longer see themselves as possessed 
by devils or spirits but instead by gases, toxins and 
viruses" (Clin Exp Allergy 1995:25:503-514).

"In a previous era, spirits and demons oppressed us. 
Although they have been replaced by our 
contemporary concern about invisible viruses, 
chemicals and toxins, the mechanisms of contagious 
fear remain the same.  To the majority of observers, 
including most professionals, these symptoms are 
indeed all in the mind" (NEJM 2000:342:2:129-130).

"The release of poison gas into a crowded Tokyo 
subway killed 12 people.  Since then there have 
been  several reports of sudden episodes of panic 
among crowds of Japanese commuters.  These were 
probably examples of mass hysteria.  Mass hysteria 
is far from new. A classic book on the subject has 
just been reissued.  It is an account of the follies of 
mass behaviour throughout the ages.  In previous 
times, mass hysteria would be blamed on demons, 
spirits and diabolical possession.  Nowadays we are 
oppressed by equally invisible gases, viruses and 
toxins"  ("Have you heard?  We are being poisoned". 
The Times, 4th July 1995, page 14).

"Like many hospital specialists, I have seen a steady 
stream of patients with many mysterious symptoms.  
The sufferers usually blame their ill health on factors 
such as solvents, pesticides, pollution, food 
additives or dental amalgam. Many report exquisite 
sensitivity to such everyday substances as perfumes, 
deodorants, tap water and hairspray.  Such people 
are sometimes labelled as suffering from 'total 
allergy syndrome'.  All explanations have much in 
common.  First, there is no personal blame.  Second, 
all appear to be modern worries.  Third, all are linked 
by another modern theme – the immune system in 
trouble. I doubt it is a coincidence that multiple 
chemical sensitivity, and total allergy, rose to 
prominence in parallel with the rise of HIV.  The idea 
that the immune system might give way because of 
an invisible external agent is now embedded in 
popular consciousness.  But just how new are these 
modern illnesses?  The things that we blame for 
making us feel ill change over the years.  Medieval 
man was oppressed by spirits and demons.  
Nowadays we blame similar ills on mysterious 
viruses and allergies (which are) an ever-changing 
parody of scientific advances of the day. 'Modern' 
illness is far from modern"  ("Sickness of the 
century.  Simon Wessely sees a connection to fears 
of the past".  The Guardian 28th May 1996, page 13).

" 'People always believe they are oppressed.  They 
seize on explanations that are credible and make 
sense within their world view: 300 years ago, people 
believed in possession by demons'.  These days, he 
writes in an editorial (in the New England Journal of 
Medicine), those demons have been replaced by our 
'concern about invisible viruses, chemicals and 
toxins'.  So how do you deal with a mass 
psychogenic / sociogenic illness?  'The challenge is 
to convey the scientific reality without being seen as 
blaming the victims', writes Wessely (The Guardian  
25th January 2000, pp8-9).

"The threat of chemical and biological weapons could 
have serious long-term social and psychological 
consequences, leading to outbreaks of panic-induced 
illness, according to a leading psychiatrist, Simon 
Wessely. Outbreaks of mass sociogenic illness are 
already appearing, (with) worries about reproductive 
outcomes, such as impaired fertility or damaged 
babies"  ("Panic could be biggest illness".  The 
Guardian, 19th October 2001).

It is indeed impossible to avoid daily contact with 
chemicals, over 30,000 of which have not been fully 
evaluated toxicologically, so their combined effects 
on humans are unknown.  Lindane, an organochlorine 
pesticide (OCP), was widely used as an insecticide in 
the farming industry because of the need for 
ever-increasing food production. The nation (and 
indeed the world) has been deluged with ever more 
complex agrochemicals, some of which have now 
been banned.  DDT was found in the food chain and 
was banned in the 1970s, but OCPs can still be 
found in environmental and biological matrices due 
to their persistence ("Man-Made Chemicals in Food 
Products". TNO Report, 2006: Netherlands 
Organisation for Applied Scientific Research).  These 
products are not effectively metabolised so they just 
accumulate in the body.

There have been innumerable items in the press 
about falling sperm counts and rising cancer levels, 
as well as the fact that the UK now has the highest 
incidence of asthma in Europe.

In June 2003 the Royal Commission on 
Environmental Pollution, chaired by Sir Tom Blundell 
FRS, FMed Sci, presented its 24th Report "Chemicals 
in Products" to Parliament by Command of Her 
Majesty.  It caused a media frenzy.  Some 
illustrations include the following:

"Thousands of chemicals are being used every day 
without proper safety tests, exposing the public to a 
'gigantic experiment' experts warned yesterday.  The 
potential dangers posed by flame retardants, 
plastics, glues and even some toothpastes are 
uncertain, because only 40 of 30,000 chemicals in 
large-scale use have been tested fully, says the 
Royal Commission on Environmental Pollution. 
Because of this, 'the chemical disasters of the past 
are likely to be repeated in the future'" ("Chemical 
timebomb". Daily Express, 27th June 2003).

"The government is experimenting with people's lives 
by failing to test properly tens of thousands of 
man-made chemicals used in everyday life, according 
to a leading biochemist who chairs the Royal 
Commission on environmental pollution"  ("Failure to 
test chemicals 'puts lives at risk' ". The Guardian, 
27th June 2003).

On 22nd April 2004 the Daily Mail carried an item by 
Robin Yapp, Science Reporter ("Revealed, the toxic 
chemicals invading our bodies") in which he wrote: "A 
huge cocktail of toxic chemicals can be found in 
every adult's blood, research revealed yesterday.  
Scientists say the chemicals – found in everything 
from TVs to sofas, cosmetics, to computer screens – 
are now so widespread in the environment that 
no-one is likely to escape contamination".

Concern was expressed that most testing of 
chemicals is done on individual compounds, but 
possible syngergistic effects of the compounds in 
multiple formulated products are generally not tested 
at all.

In 2005, the Pesticide Action Network UK published 
"The alternative pesticide residues report:  What the 
Government doesn't tell us".  This report provides 
striking examples of where the current regulatory 
system does not appear to protect consumers, 
particularly in relation to pesticide residues in food, 
and notes the uncertainties about the impact of 
pesticides on human health, particularly chronic 
illnesses, endocrine disruptors and the effect of a 
'cocktail' of pesticides.

It cannot have been overlooked by Wessely et al 
that the work of Dr Jonathan Kerr of St Georges, 
London, has linked ME/CFS to OPs  (J Clin Path 
2005:58:826-832).  Kerr et al suggest that patients 
with (ME)CFS "have reproducible alterations in gene 
regulation", noting that "sixteen genes were 
confirmed as having an expression profile associated 
with (ME)CFS.  These genes can be grouped 
according to immune, neuronal, mitochondrial and 
other functions.  These findings are consistent with 
previous work showing that patients with (ME)CFS 
have evidence of immune activation, such as 
increased number of activated T cells and cytotoxic T 
cells, and raised circulating cytokine concentrations. 
NTE (neuropathy target esterase) is a target for 
organophosphates and chemical warfare agents, both 
of which may precipitate (ME)CFS. EIF2B4 is a 
mitochondrial translation initiation factor and one of 
the EIFB2 family, within which mutations have been 
shown to be associated with central nervous system 
hypomyelination and encephalopathy. The 
involvement of genes from several disparate 
pathways suggests a complex pathogenesis involving 
T cell activation and abnormalities of neuronal and 
mitochondrial function, and suggests possible 
molecular bases for the recognised contributions of 
organophosphate exposure and virus infection".

In his subsequent paper referred to above (J Clin 
Pathol 2007), Kerr stated: "We have previously 
documented upregulation of NTE in (ME)CFS.  NTE is 
the primary site of action of organophosphate (OP) 
compounds. Exposure to OP compounds may trigger 
CFS/ME and Gulf War Illness".

Neuropathy target esterase (NTE) is inhibited by 
several OP pesticides, chemical warfare agents, 
lubricants, and plasticisers, leading to OP-induced 
delayed neuropathy in humans, with over 30,000 
cases of human paralysis (Gary Quistad et al. PNAS 
June 24, 2003:100:13:7983-7987).

Although ostensibly not personally involved in the 
report of the joint working party of the Royal 
Colleges of Physicians and Psychiatrists 
("Organophosphate sheep dip: clinical aspects of 
long-term low-dose exposure"; November 1998), 
Professor Wessely's influence shines through and a 
large number of the 85 references are his or those of 
his close colleagues who share his views. His 
frequent co-author  -- psychiatrist Anthony David -- 
was a member of the working party.

Commenting on the composition of the Royal 
Colleges' working party, Dr Richard Horton, editor of 
The Lancet, said: "All together there are ten 
members, including six professors. A committee with 
such a  distinguished provenance would seem 
immune from criticism.  Far from it.  Not one of its 
members has direct experience of looking after 
patients exposed to OPs.  The committee's 
conclusions are bound to be based on wholly 
incomplete evidence.  Pompous and complacent 
scientists are seen to be pompous and complacent"  
(Observer Life 3rd August 1997:41). 

It is a matter of note that the 1996 findings of 
neurologist Professor Peter Behan from the 
University of Glasgow linking ME/CFS to chronic 
low-dose OP exposure were excluded from the Report 
of the Royal Colleges, given that Behan found 
ME/CFS to be clinically identical to chronic low-dose 
OP exposure and that such OP exposure "in some 
way prepared the patients for the later development 
of (ME)CFS".  Behan reported that the abnormalities 
found in both ME/CFS and in OP poisoning were 
"compatible with a decreased responsiveness of CNS 
type II glucocorticoid receptors, (confirming) the 
hypothesis of brain steroid receptor resistance in 
patients with the delayed response to OPs and in 
(ME)CFS" (J Nutrition & Environmental Medicine 
1996:6:341-350).

The Royal Colleges' Report on OPs predictably 
recommended that treatment for those who have 
been exposed to OPs should be cognitive behavioural 
therapy and anti-depressants and it claimed that a 
"vicious circle" of self-maintaining symptoms, 
including "illness beliefs and fears about the 
meaning of symptoms" perpetuate ill-health. Again 
predictably, the Report urged against what many 
would regard as appropriate investigation, claiming 
that investigations "may bias the consultation 
towards a narrow physical orientation".

The Report barely mentioned the problems of 
anaesthesia for those with OP exposure, an omission 
which might well have given rise to a charge of 
scientific misconduct, given that in 1987 the 
Stationary Office had published a Guidance Note 
MS17 which unambiguously warned about the 
dangers of anaesthesia, especially the 
commonly-used muscle relaxant succinyl choline, in 
people who have been exposed to OPs. Further, in 
1995 The Royal College of Anaesthetists had warned 
members about the dangers of OP compounds and 
anaesthesia.

Neither document was mentioned in the Report of 
the Royal Colleges on OPs.

Despite the large number of papers from both US and 
UK researchers that show clear links between 
neurotoxicity and organophosphate pesticides – 
effects exacerbated by synergistic action with other 
pesticides – Professor Wessely continues to insist, 
without any convincing evidence, that there is no 
link.

This is not science, but opinion wedded to fanciful 
postulates of somatic illness which are rejected by 
other psychiatrists.

There is well-established evidence of the 
neurological toxicity that is well-recognised in the 
literature, including work from the US National 
Institutes of Health, from the MRC Toxicology Unit at 
the University of Leicester, UK and from prestigious 
institutions such as The Scripps Research Institute, 
La Jolla, California.

The target enzyme systems involved in the toxicity 
of these compounds include not only 
acetylcholinesterase and butyrylesterase but also 
much more sensitive brain enzymes and neuropathy 
target esterase which play a role in nerve function 
and in the development of motor neurone disease 
(MND).

It is well-known that OPs affect brain esterase 
enzymes at much lower dosages than those 
producing significant inhibition of 
acetlycholinesterase commonly regarded as the 
target enzymes for OPs.

OP compounds have traditionally been associated 
with the inhibition of esterase activity (Paul G 
Richards et al. Molecular Pharmacology 
2000:58:3:577-583).

It is widely known that cholinesterase inhibitors such 
as OPs are commonly used as insecticides and 
pesticides and the chemically closely-related (and 
more toxic) organophosphonates are used (and may 
be stored) in biological warfare agents.

Researchers have demonstrated that the time and 
exposure levels of these agents have considerable 
relevance in determining possible brain injury (Lola 
Roldan-Tapia et al. Neurotoxicology and Teratology 
2005:27:259-266).

Low dose exposure to both pesticides and nerve 
agents gives rise to delayed chronic neurotoxicty 
(Abou-Donia et al. Archives of Environmental Health 
2003:58:484-497).

Abou-Donia and Garrettson have identified 
auto-antibodies to neuronal proteins as a marker for 
OP neurotoxicty (Environmental Epidemiology and 
Toxicology 2000:2:27-41).
It is a matter of public record that the incidence and 
prevalence of Alzheimer's disease are increasing 
rapidly (Pritchard et al. Public Health 
2004:118:268-283).

As well as providing a target for the action of 
pesticides, the cholinergic system plays an important 
role in the progression of Alzheimer's disease and 
there is strong correlation between the severity of 
the dementia and the cholinergic deficits (Paul G 
Richards et al.  Molecular Pharmacology 
2000:58:3:577-583).

In a paper looking at the neurotoxicity of chronic 
exposure to moderate levels of pesticides, Kamel et 
al analysed cross-sectional data from 18,782 
individuals over a four year period in relation to 23 
neurological symptoms.  Among chemical classes of 
insecticides, associations were strongest for 
organophosphates and organochlorines.  Results 
suggest that neurological symptoms are associated 
with cumulative exposure to moderate levels of 
organophosphate and organochlorine insecticides 
(Freya Kamel et al. Environmental Health 
Perspectives 2005:113:7:877-882).

Changes in erythrocyte enzymes in humans have 
been reported after exposure to different pesticides, 
including OPs, one of which appears to be an 
important biological indicator of pesticide exposure 
(Antonio F Hernandez et al. Toxicology Letters 
2005:159:13-21).

From just these few illustrations, it is clearly 
untenable for anyone to claim that symptoms of 
low-dose OP poisoning are a somatisation disorder.


The Camelford catastrophy

Wessely is equally dismissive of the Camelford 
drinking water contamination, where in July 1988 
twenty tonnes of aluminium sulphate were pumped 
into the drinking water supplies of the Cornish town, 
resulting in the death of seven people, with 25,000 
people suffering serious health effects and with 
40,000 animals affected (The Ecologist 
1999:20:6:228-233). The death toll has since risen – 
see The Daily Telegraph, 20th April 2006: 
"Alzheimer's fear grips poisoned water town" by 
Medical Editor Celia Hall. Bone biopsies carried out 
over six months later showed stainable aluminium. 
Although noting that some peoples' hair, skin and 
nails turned blue, in their paper in the Journal of 
Psychosomatic Research (The Legend of Camelford: 
1995:39:1:1-9) Wessely and his co-author Anthony 
David were not to be moved: they claimed that it 
was all mass hysteria (BMJ 1995:311:395) and that 
the "somatic" symptoms were the result of 
heightened perception of normal and benign 
symptoms and irresponsible reporting by the press, 
though they have not explained by what mechanism 
hysteria affects animals. 

In 1999 it was conclusively shown by Paul Altmann 
et al that there was objective evidence of 
considerable organic brain damage compatible with 
the known effects of exposure to aluminium and that 
it was this exposure, not anxiety or hysteria, which 
was the cause of the symptoms exhibited by those 
who had been exposed to the contaminated water  
(BMJ 1999:319:807-811). 

More recently, Exley and Esiri described severe 
cerebral congophilic angiopathy coincident with 
increased brain aluminium in a resident of Camelford 
(JNNP 2006: doi:10.1136/jnnp.2005.086553), causing 
Walter Lukiw, Associate Professor of Neuroscience at 
Louisiana State University Health Sciences Centre, to 
note that as over-expression of stress-sensing, 
pro-inflammatory and pro-apoptotic genes have been 
observed in aluminium sulphate-induced 
neurotoxicty, "careful attention should be paid to the 
neurological status and neuropathological outcome of 
the thousands of unfortunate victims at Camelford"  
(eBMJ, 21st April 2006).

In December 2007, the West Somerset Coroner 
Michael Rose ordered the police to re-open the 
Camelford pollution case following allegations of a 
cover-up (Guardian, 13th December 2007).  

Responding to this announcement, Sue Waddle, 
spokesperson for the charity ME Research UK, a 
magistrate and the mother of a daughter severely 
affected by ME wrote to The Guardian on 16th 
December 2007: "I and many others await with 
interest the outcome of any police inquiry. A 1995 
paper by two psychiatrists asserted that mass 
hysteria and / or anxiety were responsible for the 
supposed suffering of those in the Camelford area at 
the time. (One of these 'experts') has also given his 
expert opinion on many other 'non-illnesses' and 
'unfounded health worries'. He happens to be the 
Government expert on electricity pylons, mobile 
phone masts, Gulf War Syndrome and myalgic 
encephalomyelitis".

The Coroner's conclusions are still awaited, but 
clearly the existing evidence does not support 
Professor Wessely's beliefs that the Camelford 
disaster was merely contagious mass hysteria.


Irritable bowel syndrome

Another of Professor Wessely's targets for 
somatisation disorder is irritable bowel syndrome or 
IBS (The Lancet 1999:354:936-939) but the evidence 
does not support such a model.

The following are illustrative of a wide body of 
evidence:

At the 68th Annual Scientific Meeting of the American 
College of Gastroenterology held in 2003 at 
Baltimore, important findings were presented by lead 
investigators from the University of Vermont (Peter 
Moses, Associated Professor of Medicine and Director 
of Clinical Research in the Digestive Diseases, and 
Gary Mawe, Professor of Anatomy and Neurobiology): 
"Serotonin is a critical signalling molecule necessary 
for normal gut function.  Our finding that key 
elements of serotonin signalling are changed in IBS 
lends credibility to the notion that IBS is not simply 
a psychological or social disorder as was once 
thought, but instead due to altered gut biochemistry 
and interactions between the gut and the brain.  
Now we have a perspective on molecular changes in 
the intestines of individuals with IBS that we did not 
have before.  We identified a significant decrease in 
the serotonin transporter in cells that form the inner 
lining of the bowel. Because the transporter is 
diminished in IBS, serotonin stays around longer, 
and this can lead to changes in motility, secretion, 
and sensitivity"  (Ecotoxicology 2003:12 
(1-4):345-363).

In 2006, the BMJ Learning programme by a Clinical 
Research Fellow and a Professor of Medicine and 
Gastroenterology featured IBS (BMJ 
2006:332:280-283).  This programme pointed out 
that a number of pathophysiological abnormalities 
can often be identified: "IBS is now clearly 
understood to be a multifactorial condition, rather 
than its just being due to psychopathology.  These 
include motility, visceral sensation, central 
processing, genetics, inflammation and 
neurotransmitters".

At the American Academy of Neurology 59th Annual 
General Meeting held in Boston in April / May 2007, 
researchers from Brazil showed that people with 
inflammatory bowel disease were at risk for 
subsequent neurological disorders and presented 
convincing evidence of the link between IBD and 
peripheral neuropathy: "Based on these results, we 
believe IBD itself is directly related to the 
neuropathy and that neuropathy in these patients is 
much more common than previously thought".

In ME/CFS specifically, there is evidence that the 
disorder is accompanied by an increased 
transloctaion of endotoxins of gram-negative 
enterobacteria through the gut wall, with signs of 
activation of the inflammatory response system and 
IgG3 subclass deficiency (Maes M et al. Neuro 
Endocrinol Lett 2007:28:6).

Clearly, the out-dated hypothesis that IBS is a 
psychosomatic disorder has been abandoned by 
those who fulfil their contractual obligations to keep 
up-to-date with medical science, yet Professor 
Wessely et al seem unaware of this progress in 
medicine.


Mobile phone sensitivity

In 2003 Professor Wessely's team was awarded a 
research grant of £405,000 to investigate the 
psychological and biological effects of mobile phone 
radiation in healthy subjects and subjects with 
self-reported mobile phone hypersensitivity. 
Professor Wessely was Principal Investigator.  The 
study was expected to last until April 2006.

When this was announced, one astute ME sufferer 
observed: "That's one more negative result, then!".

On 2nd September 2003 the Countess of Mar wrote 
to Professor George Szmukler, Dean of Psychiatry at 
the Institute of Psychiatry about Professor Wessely's 
involvement in this study:

"As Principal Investigator of the (new) Mobile Phone 
Research Unit at Kings College Hospital, doubtless 
(Professor Wessely) is soon to 'discover' mobile 
phones have no biological consequences for human 
health other than the aberrant beliefs of those using 
them".

Perhaps importantly, the study was jointly funded by 
the Programme Management Committee of the MTHR 
(Mobile Telecommunications and Health Research 
programme), which itself is jointly funded by the UK 
Department of Health and the mobile 
telecommunications industry.

The study was published on 15th April 2006 in the 
BMJ (2006:332:886-891).

As widely anticipated, Professor Wessely's study 
concluded:  "We found no evidence that self-reported 
sensitivity to mobile phone signals has a biological 
basis".  However, the study also noted: "That 
symptom severity did increase during exposure is 
interesting.  These symptoms were not trivial.  
Indeed, for some they were so severe that exposures 
had to be stopped early or the participants withdrew 
from the study".  

Undeterred, the authors still advised: "In terms of 
their clinical implications, these results do not 
suggest that attempting to reduce exposure to 
mobile phone signals will be a useful strategy for 
patients who report sensitivity to them.  Although 
such interventions might be actively sought by 
patients, in the longer term a danger exists that 
they will reinforce a patient's view of himself or 
herself as being sensitive to electromagnetic fields.  
Instead it may be better to encourage such patients 
to test alternative explanations for their symptoms 
by using cognitive behavioural therapy. The 
symptoms reported by 'sensitive' people may be 
primarily psychological in origin".

It is notable that a study from Finland that was 
published the same year as Professor Wessely's 
study came to interesting conclusions, namely, that 
mobile phones affect brain blood flow: "Mobile 
phones create a radio-frequency electromagnetic 
field around them when in use. We studied the 
effects of a commercial mobile phone on regional 
cerebral blood flow (rCBF) in healthy humans using 
positron emission tomography (PET) imaging (in) a 
double blind, counterbalanced study. Explorative and 
voxel-based statistical analysis revealed that a 
mobile phone in operation induces a local decrease 
in rCBF beneath the antenna in the inferior temporal 
cortex and an increase in the prefrontal cortex, 
suggesting that the electromagnetic field (EMF) 
emitted by a commercial mobile phone affects rCBF 
in humans.  These results are consistent with the 
postulation that EMF induces changes in neuronal 
activity" (Sargo Aalto et al. Journal of Cerebral Blood 
Flow & Metabolism 2006:26:885-890).

Whilst the Finnish study did not seek to identify 
hypersensitivity to mobile phones, it did provide 
actual evidence that they affect brain blood flow.

Arthur Firstenberg is unequivocal:  "The most basic 
fact about cell phones and cell towers is that they 
emit microwave radiation; so do wireless computers, 
cordless phones and their base units.  A cell phone 
that is on but not in use is also radiating.  It is a 
fact that we are all being bombarded, day in and day 
out, whether we use a cell phone or not, by an 
amount of radiation that is some ten million times 
as strong as the average natural background.  A cell 
phone, like a microwave oven, heats you from the 
inside out, not from the outside in. The presence of 
albumin in the brain is always a sign that blood 
vessels have been damaged and that the brain has 
lost some of its protection.  Researchers have found, 
consistently for 18 years, (that) microwave radiation, 
at doses equal to a cell phone's emissions, causes 
albumin to be found in brain tissue. In research 
published in 2003,a single two-hour exposure to a 
cell phone just once permanently damaged the blood 
brain barrier. Two minutes on a cell phone disrupts 
the blood brain barrier; two hours on a cell phone 
causes permanent brain damage" (Leif G Salford et 
al.  Environmental Health Perspectives: 
2003:111:7:881-883).

Firstenberg continues:  "Diseases that have 
increased remarkably in the last couple of decades 
(which) there is good reason to connect with the 
massive increase in radiation in our environment, 
include asthma, sleep disorders, multiple sclerosis, 
ALS, Alzheimer's disease, fibromyalgia, chronic 
fatigue syndrome, hypothyroidism, diabetes, 
malignant melanoma, testicular cancer, and heart 
attacks and strokes in young people. The literature 
showing biological effects of microwave radiation is 
truly enormous, running to tens of thousands of 
documents.  I am amazed that industry 
spokespersons are getting away with saying that 
wireless technology has been proved safe or – just 
as ridiculous – that there is no evidence of harm.  A 
1998 survey by the California Department of Health 
Services indicated that at that time 120,000 
Californians – and by implication one million 
Americans – were unable to work due to 
electromagnetic pollution" (California EMF Program:  
The Risk Evaluation. 2002).

Firstenberg is clear: "The ranks of these so-called 
electrically sensitive are swelling in almost every 
country in the world, marginalized, stigmatised and 
ignored".  

The full paper can be found at  
http://www.eldoradosun.com/Archives/01-06_issue/Firstenberg.htm 
.

Wessely et al apparently do not accept such 
findings, preferring instead to endorse findings of a 
three-year study at the University of Essex for the 
UK Health Protection Agency (HPA), which found 
"Phone mast allergy ' in the mind' ".  Perhaps it is 
relevant that, as in the case of Professor Wessely's 
study, this study was funded by the Mobile 
Telecommunications and Health Research 
programme, a body which itself is funded by industry 
and Government.


Conclusion

In defiance of the extensive published evidence that 
ME/CFS and other disorders mentioned above are not 
psychosomatic, Professor Wessely's unremitting 
insistence that they are in reality but one single 
behavioural disorder seems indefensible.

In April 2000 an Opinion from a leading Queen's 
Counsel (who is a member of the House of Lords) 
was obtained about Professor Wessely's dogma on 
ME/CFS. That Opinion is concise:

"On the document you have sent me there is an 
overwhelming case for the setting up of an 
immediate independent investigation as to whether 
the nature, cause and treatment of ME as considered 
by the Wessely School is acceptable or consistent 
with good and safe medical practice. There is 
substantial doubt as to whether such could be the 
case. It is, of course, open to patients (and) their 
parents to seek Judicial Review".

In her letter of 2nd September 2003 to Professor 
Szmukler referred to above, the Countess of Mar 
wrote:

"Through his prolific output Professor Wessely has 
introduced his personal beliefs into the UK medical 
literature and those beliefs are aimed at changing 
the perception of ME/CFS held by both medical and 
lay people. Through the shortcomings of the 
peer-review system, his personal beliefs have 
become medical doctrine, effectively turning patients 
into victims". 

Without doubt, there is substantial evidence in the 
public domain that Professor Wessely himself has 
carried out an unremitting campaign of denigration of 
ME sufferers. One of the most notorious was his 
involvement with a poll run by the British Medical 
Journal in 2002 in which doctors were asked to vote 
on what they considered to be "non-diseases".  It is 
understood that it was Professor Wessely himself 
who nominated ME. Along with big ears and freckles, 
ME was duly voted a "non-disease" that should be 
left medically untreated.

It must be due in large part to such disgraceful 
antics and to the fact that Professor Wessely and 
other members of the Wessely School are 
Government advisers on "CFS" that people with 
ME/CFS are suffering politically-driven health 
discrimination which is contrary to the Disabled 
Discrimination Act.

There is a broad body of informed opinion – national 
and international -- that Professor Wessely belittles 
other peoples' work without addressing the issues.
For a detailed exposition of the tactics of dismissal 
used by the Wessely School, see "The Mental Health 
Movement: Persecution of Patients? A Consideration 
of the Role of Professor Simon Wessely and Other 
Members of the 'Wessely School' in the Perception of 
Myalgic Encephalomyelitis (ME) in the UK.  Briefing 
Paper for the House of Commons Health Select 
Committee" by Malcolm Hooper et al           
http://www.meactionuk.org.uk/SELECT_CTTEE_FINAL_VERSION.htm 

Apart from the Wessely School's own studies, there 
is little published evidence to support the notion 
that CBT actually works in ME/CFS, and their own 
studies have been the subject of criticism on the 
grounds that many of their studies are deemed to be 
methodologically flawed, principally because of the 
authors' selection bias  (i.e. they are not studying 
cases of true ME/CFS, but are then claiming that 
their results relate to ME/CFS).

For many years Professor Wessely has achieved 
considerable coverage of his views in the UK media 
on topics ranging from dental amalgam, "blaming 
mummy for a bad tummy" "the power of the 
placebo", "how long should a sick leave last?", bogus 
miracle cures, and total allergy syndrome to RSI 
(repetitive strain injury), so the national press 
coverage of the apparently exponential increase in 
rates of psychosomatic disorder and the alleged 
efficacy of CBT is substantial, with Professor 
Wessely being frequently quoted in the broadsheet 
newspapers.

Also, due in no small measure to Professor Wessely's 
apparent control over what gets publicly funded on 
ME/CFS (perhaps due his previous positions on three 
MRC Boards and to the fact that "Wessely School" 
members hold influential positions at the MRC) and 
what gets published on ME/CFS in the UK (perhaps 
exercised through his position as a member of the 
Scientific Advisory Panel to the Science Media Centre 
which was founded in 1999; it is funded by 
pharmaceutical companies and operates like a 
newsroom to promote the views of industry and to 
launch fierce attacks against those who question 
them), the medical journals frequently publish highly 
uncritical assessments of CBT which focus on the few 
studies which support its use, whilst ignoring those 
controlled trials which did not find CBT to be 
effective (and which warned about the dangers of 
exercising beyond fatigue).  

This matter is the subject of an article entitled  "A 
Subgroup Analysis of Cognitive-Behavioral Treatment 
Studies" by Fred Friedberg  (JCFS: 1999:5: 
3-4:149-159; co-published simultaneously as 
"Chronic Fatigue Syndrome: Advances in 
Epidemiologic, Clinical and Basic Science Research 
(ed) Roberto Patarca-Montero, Haworth Press Inc. 
1999).

Friedberg, clinical professor in the Department of 
Psychiatry at the State University of New York, made 
the following cardinal points:

"Several studies of graded activity-oriented cognitive 
behavioural treatment for (ME)CFS, all conducted in 
England, have reported dramatic improvements in 
functioning and substantial reductions in 
symptomatology.
           
"On the other hand, cognitive behavioural 
interventions conducted in Australia and the United 
States have not found significant improvements in 
functioning or(ME)CFS symptoms.

"Furthermore, descriptive studies of CF (chronic 
fatigue) patients in England, the US and Australia 
suggest that the (ME)CFS population studied in 
England shows substantial similarities to depression, 
somatization or phobia patients, while the US and 
Australian research samples have been clearly 
distinguished from primary depression patients and 
more closely resemble fatiguing neurological 
illnesses".

Professor Friedberg notes the "widely divergent 
clinical presentations" and he notes specifically that 
because all the apparently successful CBT studies 
have all been conducted in England, a replication of 
these findings in a well-designed US study would be 
necessary before a general recommendation for CBT 
could be made.

Professor Friedberg's paper was published almost a 
decade ago, yet Professor Wessely's influence in the 
UK remains undiminished.

In a paper dated 8th March 2008 entitled "The Year 
of No Compromise" Greg Crowhurst, a health care 
professional whose wife is one of the most severely 
affected ME/CFS sufferers in the UK, said the 
following:

"This is a simple summary of the inferred messages 
underpinning the psychiatric paradigm, currently 
being heavily promoted in the UK".

Although written specifically in relation to ME/CFS, 
the summary applies equally to all disorders 
designated by Wessely et al as being "medically 
unexplained" which these psychiatrists assert are 
Functional Somatic Syndromes (FSS), including the 
disorders outlined above.  These "Wessely School" 
psychiatrists in fact believe that ME/CFS, FM, IBS, 
non-ulcer dyspepsia, pre-menstrual syndrome, 
chronic pelvic pain, atypical chest pain, 
"hyperventilation syndrome", tension headache, 
temperomandibular joint pain, globus syndrome and 
multiple chemical sensitivity are but one single 
psychiatric disorder (Lancet 1999:354:936-939).


Crowhurst's summary exactly captures the
situation in the UK:


"The recommendations:

• do not investigate ME/CFS patients 
• do not provide special facilities for ME/CFS patients
   other than psychiatric clinics 
• do not offer special training to doctors about the 
   disorder 
• do not offer appropriate medical care for ME/CFS 
   patients 
• do not offer respite care for ME/CFS patients 
• do not offer State benefits for those with ME/CFS  
• do not conduct  biomedical research into the
  disorder 

The tactics:

• the wreaking of  havoc in the lives of ME/CFS 
   patients and their families by the arrogant pursuit
   of a psychiatric construct of the disorder 
• the attempts  to subvert the international 
   classification of this disorder from neurological to 
   behavioural
• the propagation of  untruths and falsehoods about
   the disorder 
• the building of affiliations with corporate industry 
• the insidious infiltration  of all the major 
   institutions 
• the denigration of those with ME 


The practices:   

• the attempt to make "ME" disappear in a sea of
  chronic fatigue
• the refusal to see or acknowledge the multiplicity
  of symptoms 
• the ignoring and misinterpretation of the
   biomedical evidence
• the suppression of published findings 
• the vested interests        


The impact:

• the arresting and sectioning of protestors 
• the silencing of ME patients, through being given a 
  psychiatric label 
• the suppression of dissent 
• the labelling of ME patients as the "undeserving 
  sick", as malingerers 
• the forcible removal  of sick children and adults 
  from their homes.

"It is poignant how an institutionally supported 
prejudice against people with ME has arisen, based 
on nothing more substantial than supposition and 
opinion, carefully disseminated.

"You have to be very careful how you discern the 
truth; it is an important issue in the corporate wall 
of collusion surrounding the physically sick people 
who have ME.

"We have to be very clear about what is the truth 
about ME and what is either deliberate, naive or 
ignorant misinterpretation or misrepresentation. The 
impact of the above strategy on peoples' lives is 
catastrophic".

Crowhurst's article can be accessed at  
www.metrainingco.org.uk

As noted by Hooper et al, the malign influence of 
Wessely School dogma extends throughout 
Government departments, throughout the NHS, and 
even extends to the Judiciary, with one Claimant 
being told at a High Court Hearing that "Judges 
regard ME as psychological self-indulgence". One 
Local Health Board will only fund treatment for 
ME/CFS where the focus is CBT/GET. A spokesman for 
Grampian NHS Trust is on record in 2003 
(disturbingly, this was a year after the publication of 
the UK Chief Medical Officer's Working Group Report) 
as stating "ME is not a condition we recognise or 
treat" (see "Illustrations of Clinical Observations and 
International Research Findings from 1955 to 2005 
that demonstrate the organic aetiology of ME/CFS" 
http://www.meactionuk.org.uk/Organic_evidence_for_Gibson.htm 
).

The damage perpetrated on those with ME/CFS by 
Wessely School adherents cannot be quantified.  The 
Wessely School argument that syndromes like 
ME/CFS cause "unnecessary expenditure of medical 
resources" has been criticised by a leading US 
researcher for its pernicious public policy implications 
(Lancet, 11th December 1999:354: number 9195).

In the UK, patients with ME/CFS, particularly 
children, have suffered gross and barbaric abuse and 
persistent denigration as a consequence of the 
beliefs of Wessely School psychiatrists who are 
attempting to control the national agenda for this 
complex and severe neuro-immunological disorder 
and who by their words and deeds have wreaked 
havoc in the lives of many ME/CFS patients and their 
families by their arrogant pursuit of a psychiatric 
construct of the disorder in clear defiance of the 
clinical and scientific evidence of the organic nature 
of ME/CFS.

There have been persistent and frequently covert 
attempts by these psychiatrists to subvert the 
international classification of ME/CFS, with 
destructive consequences for those affected.

It seems that Professor Wessely is accountable to 
no-one for his role in determining UK Government 
policy that the disorders mentioned above do not 
exist as discrete entities and that such patients 
should be "managed" by psychotherapy.

Instead, in return for his decades of denigration of 
patients (for actual quotations from his work see 
"Quotable Quotes about ME/CFS" available from the 
charity Invest in ME at 01603 – 701980) and for his 
denial and dismissal of the published evidence that 
he is wrong, and for all the seemingly consequential 
suffering and despair arising from his personal 
beliefs, Professor Wessely has been lauded and 
honoured.

On 27 August 2003, Dr George Szmukler, Dean of 
Psychiatry, Institute of Psychiatry, King's College 
Hospital, London, wrote to the Countess of Mar 
about Professor Simon Wessely:  "Professor Wessely 
must be judged one of the most outstanding 
researchers in the UK, and indeed internationally.  
Professor Wessely has been awarded a Research 
Medal by the Royal College of Physicians specifically 
for his work on CFS and he has served on many 
prestigious scientific committees, further attesting to 
the high regard in which he is held by the scientific 
community".

Not everyone – including doctors and medical 
scientists from around the world -- shares that view
 

Problems with the use of 'ME/CFS' by M.E. advocates (Summary)
By Jodi Bassett, March 2008

Myalgic Encephalomyelitis (M.E.) is a debilitating neurological disease
which was formally classified as an organic neurological (CNS) disease in
the World Health Organisation's International Classification of Diseases in
1969 with the code G.93.3.

M.E. is a distinct, scientifically measurable and testable, acute onset,
organic neurological disease. 'CFS' in contrast, is not a distinct disease.

The man-made financially motivated 'CFS' definitions describe no distinct
patient group. 'CFS' doesn't exist. The use of the mixed term 'ME/CFS' by
some former M.E. advocates (and others) makes no sense at all, but is
unfortunately becoming far more common.

Many of those M.E. advocates who use the term 'ME/CFS,' say, (correctly!)
that the distinct neurological disease M.E. and the man-made bogus disease
category of 'CFS' are NOT the same.

But they then often also say things like; 'ME/CFS is a serious disorder
which occurs in epidemic and sporadic forms, is initiated by a virus (most
likely an enterovirus), and is defined by severe fatigue...' etc. which
incorrectly imply that the name and definition of 'CFS' is synonymous with
authentic M.E.

'ME/CFS' advocates often (bizarrely) pour scorn on the Wessely school's use
of the term 'CFS/ME' and complain about how ridiculous it is that anyone
could think that 'ME/CFS' and 'CFS/ME' were the same thing. You also
sometimes read comments like; 'This recent (M.E.) CFS study showed that
patients had....' which implies again, that 'CFS' is just another name for
M.E.

It's crazy! You just can't argue that M.E. and 'CFS' are not the same, and
then use the term 'ME/CFS' (or 'ME-CFS' or 'CFS/ME') and expect to be taken
seriously or to get the points across that we desperately need to. Using
these terms CONTRADICTS whatever else you say about M.E. and 'CFS' not being
the same. It makes what you are saying completely nonsensical and illogical.

That's only the start of the problem however.



Why is 'ME/CFS' being used so much more often?

It seems like using 'ME/CFS' is really just about popularity, very often,
sadly. That it is just about playing both (or all) sides and so keeping the
maximum number of people superficially happy generally, and superficially
happy with the individual advocate or group. These mixed terms are accepted
by many propaganda supporting 'CFS' researchers and 'advocacy' groups, by
people misdiagnosed with 'CFS' who don't have M.E. as well as by some
genuine neurological M.E. patients. So supporting these vague mixed terms
makes an advocate or advocate group popular with the largest possible number
of patients and patient groups etc. But is that really a good enough reason
to work against the best interests of the patient group (or groups) they
claim to be advocating for?

None of the justifications made by individual advocates or advocacy groups
for using the term 'ME/CFS' hold up. These are some of the most common;

  a.. The claim that we have to use the term 'CFS' (and so 'ME/CFS') because
some of the recent research (at least partly) involving M.E. patients has
been done under the name 'CFS' is bogus.
  Of course we should reference such research that is relevant, but this
could very easily be done by writing a short explanation of the confusion
between M.E. and 'CFS' and including this in each article or piece of
research. This is the type of vital basic information that even without the
terminology issues, we need to get out there as a first priority anyway. To
say this notification has to be done with the terminology itself is
ridiculous. Yes the term 'ME/CFS' lets you claim some of the relevant to
M.E. 'CFS' research, but you also blindly claim the other 95% (or more) of
'CFS' research which isn't relevant to M.E. and which directly harms M.E.
patients (etc.).

  b.. The claim that 'ME/CFS' is about getting those M.E. patients
misdiagnosed with 'CFS' to be able to find information about M.E. also
doesn't
hold up to scrutiny.
  Again, yes, this is something that it is very important that we do, but it
is misleading to suggest that this can only be done using the main
terminology we use. It could be done so simply with a short explanation
included in each text. This way you would also avoid giving patients
misdiagnosed with 'CFS' who DON'T have M.E., the mistaken (and harmful) idea
that they do have M.E. and that M.E. and 'CFS' are the same, and so on.

  c.. The claim that 'ME/CFS' is a temporary term, and that eventually the
'CFS' part will just drop off and our only chance for change is gradual
change is false.
  This exact strategy has been tried and tried again for the last 20 years
and it has failed totally. Trusting that if we compromise ourselves now (by
mixing M.E. and 'CFS') that we will be rewarded with something that we want
to happen but which harms the interests of the vested interest group
involved - without any type of force being exerted on our part - is just
fanciful, unfortunately.

  d.. The claim that we have to use this term because it is used in the 2003
Canadian 'ME/CFS' definition is also bogus.
Yes, specific parts of the paper are relevant to M.E. to some extent and
worth supporting, but this is NOT a pure M.E. definition, it is at best a
mix of M.E. and 'CFS' and does not select a 100% M.E. patient group. For
each good part of the paper there is also another scientifically
questionable and psychologically biased part. It reinforces some of the most
harmful myths about M.E. It does not justify the use of 'ME/CFS' by genuine
M.E. advocates.

For every problem 'ME/CFS' supposedly solves, it creates many more far worse
problems, and these same primary problems can all be solved simply in other
ways that have NO HUGE DOWNSIDES!



So who does benefit from Myalgic Encephalomyelitis being mixed with 'CFS'?

That is the real question we should all be asking. The answer of course is,
yet again, powerful financial vested interest groups such as the medical
insurance industry, the vaccine industry, the government and others who are
directly saving themselves millions or even billions of dollars through this
'CFS' and 'ME/CFS' obfuscation.

It is hardly a coincidence that Professor Simon Wessely - the most powerful
and influential of the group of doctors who have made themselves the tools
of insurance companies - is the person credited with inventing the mixed
term 'CFS/ME.' The mixing of M.E. and 'CFS' in this way serves vested
interest groups well.

This is why so many of the very worst government reports (and so on) in the
UK, Australia and the Netherlands which talk about patients as if they were
mildly ill malingerers who could easily improve if not recover from their
'fatigue' if only they could be convinced to try CBT or GET, and so on, (a)
often use terms such as 'CFS/ME' or 'ME/CFS' in the titles and throughout
and (b) very often mix in some of the facts about M.E. (ie. symptoms,
history, severity/disability etc.) with bogus information about 'CFS' while
of course the entirety of the all important CONCLUSIONS given (ie.
aetiology, psychological status, improvement of symptoms, response to
treatments and recovery rates) are drawn exclusively from non-M.E. 'CFS'
patient groups.

'ME/CFS' and 'CFS/ME' lets these groups have it both ways. They get to
continue happily with their unscientific and unethical 'CFS' obfuscation
agenda, and they get to do so with far less opposition from the patients
they're harming, or even with the support of some of these patient groups.
This is why articles and studies which mix together facts about M.E. and
'CFS' are even more dangerous and harmful in many ways than pure 'CFS' ones.

The 'ME/CFS' concept: (a) is confusing, (b) is illogical, (c) strongly
reinforces the same misinformation which is the cause of our problem (ie.
that M.E. and 'CFS' are the same), (d) benefits the interests of the same
vested interest groups which benefit from 'CFS' in the exact same way, (e)
reinforces the position of vested interest groups that 'CFS' is a real
disease and that their bogus 'CFS' work/research is scientifically valid,
(f) does nothing to counter the real problems which are the definitions of
'CFS' and the involvement of vested interest groups in what should be a
purely scientific discussion, (g) greatly reduces the credibility of M.E. by
aligning it with the bogus disease category of 'CFS,' (h) lessens the impact
of the legitimate facts about M.E., (i) can work to cut M.E. off from its 70
year history, previous case studies, research and definition, and its
correct WHO classification and so on; just as 'CFS' does, (j) harms M.E.
patients and those misdiagnosed with 'CFS' who don't have M.E. in the same
way 'CFS' does, and (k) holds back the fight for justice and recognition of
authentic neurological Myalgic Encephalomyelitis immeasurably.

The mixing of M.E. and 'CFS' was invented by these vested interest groups
and it is a tool they use to good effect and as much as possible. Clearly,
legitimate M.E. advocates using THE SAME TWISTED AND OBSFUCATING STRATEGY is
not a good idea and is only going to further their interests instead of
ours.



What can M.E. advocates learn from how other diseases have gained
recognition and justice finally?

Us using 'ME/CFS' now is as short-sighted as it would have been for HIV and
AIDS activists years ago, when the name was "Gay Related Immune Deficiency
Syndrome' or GRIDS, to have pushed for the acceptance of 'HIV/GRIDS' or
'AIDS/GRIDS.' Or if multiple sclerosis advocates had pushed for the
acceptance of MS/Hysterical paralysis years ago instead of just MS. People
pushing now for the so-called 'compromise' of 'ME/CFS' is just the same -
just as unwise - except that 'ME/CFS' is far, far worse.

This is because our problem isn't just that the term 'CFS' is offensive and
inaccurate but that the term 'CFS' is inextricably linked, and synonymous
with the DEFINITIONS of 'CFS' and that this fictional 'CFS' disease
construct is, along with the unethical involvement of groups with financial
vested interests in what should be a purely scientific discussion, the cause
of our entire problem!

If the aforementioned groups had not chosen to fight hard for what was
scientifically correct and right, instead of settling for the same sort of
unnecessary hijacking of reality that 'ME/CFS' advocates are suggesting.
then who knows how much this may have held these patient groups back, or for
how many years or decades their positive outcomes may have been delayed
because of it?

Successful advocacy campaigns have achieved success in the past through
guts, determination, a willingness to fight for the facts and what is
scientifically right, refusing to compromise (or sell) themselves and their
integrity. We have to do the same if we want the same type of success.



This isn't just about terminology, it is about definitions

The terminology is often used interchangeably, incorrectly and confusingly.
But the DEFINITIONS of M.E. and 'CFS' are very different and distinct, and
it is the definitions of each of these terms which is of primary importance.
Having said that, very often, advocates that have compromised with the
terminology have also compromised and warped the definition of M.E. too.

So very often, where there's smoke there's fire!

When people use the term 'ME/CFS' it should set alarm bells ringing for you
to be very wary that they haven't also 'compromised' and warped the
definition of M.E. and the known scientific facts about M.E. and that they
don't now consider people with Fibromyalgia, various post-viral fatigue
syndromes or Lyme disease as 'ME/CFS' patients or as so-called 'ME/CFS
sub-groups' or support any other of the 'CFS' myths as relating to M.E.

Most often when the term 'ME/CFS' is used, the text refers to a bizarre mix
of facts relating to both M.E. and 'CFS' or instead purely facts relating to
any of the various bogus 'CFS' definitions. (The same applies to the terms
'CFS/ME,' 'CFIDS' 'and Myalgic 'Encephalopathy' etc.)



In conclusion...

'ME/CFS' just doesn't make sense. Why weaken our position so much for no
good reason? - because make no mistake, the unadulterated facts about M.E.
(the outbreaks of M.E. and the links to polio outbreaks (and the polio
vaccine), how much we know about M.E. and how much we knew even before 1988,
who is behind 'CFS' and why, and all the needless deaths and abuse knowingly
caused by the 'CFS' scam) are a far more compelling true story than any
wishy-washy and contradictory tales defending 'CFS' or 'ME/CFS.'

We have to learn to see past the SUPERFICIAL and be far more critical about
which information (and advocates and groups) we accept as being
scientifically sound, relevant to us, and in our best interests too. The
fact that an article might merely mention some facts about M.E. along with a
lot of 'CFS' propaganda, or say that 'CFS' or 'ME/CFS' is 'real' or 'is not
psychological' or merely mention some physical abnormalities or implicate
various viruses in some way, or use the term 'ME/CFS' or 'CFS/ME' is nowhere
near good enough.

(Most of the very worst articles and reports do many or even all of these
things!)

Many supporters of 'ME/CFS' have a tie to the big vested interest groups
involved, while others are motivated by their own vested personal interests.
Undoubtedly, some M.E. patients are simply too severely ill and disabled to
do more than very basic reading or to engage in any type of critical
thinking and so have been persuaded to support 'ME/CFS' by other advocates
they've trusted to steer them in the right direction - and have had that
trust cruelly abused. There are no doubt many different reasons for the rise
in 'ME/CFS.' But regardless of the different motivations, the results will
be just the same unfortunately. That's the problem.

If you open your mind and forget for a minute about how commonly 'ME/CFS' is
used and about all the justifications you've been given for it - and look at
it logically - it really is hard to come to any other conclusion than that
'ME/CFS' can only impede our fight for justice and recognition.

The time for hoping for non-confrontational gradual change, compromising
ourselves for our abusers and trying endlessly to work within the completely
bogus 'CFS' framework ON THEIR TERMS has to be over. 20 years is enough.

The definition of INSANITY is doing the same thing over and over and
expecting a different result.

It is time that we fought for authentic Myalgic Encephalomyelitis in name,
definition and World Health Organization classification, without compromise.
It is also time we all fought for the bogus financially motivated disease
category of 'CFS' to be completely abandoned - without compromise - for the
sake of every patient group involved; M.E. patients and all those
misdiagnosed with 'CFS' who do not have M.E. alike.

Let's do exactly what these vested interest groups are hoping we WON'T do!



-------

For more information please see the far more detailed full-length text
(which also includes some excellent quotes from many other M.E. advocates
and experts on this topic) at:
http://www.ahummingbirdsguide.com/problemswithmecfs.htm

See also: The Terminology and Definitions Explained and What is Myalgic
Encephalomyelitis?

To download or print copies of this text in Word or PDF formats, click on
the link above.

A final plea: It is never to late for YOU to abandon 'ME/CFS' and to start
fighting for M.E. in name and definition. We need you fighting hard and
strong for M.E., yesterday! Any type of blame etc. for the past is
irrelevant and unhelpful. What matters is now, and stopping things becoming
even worse. The need is so urgent.

Permission is given for these documents to be freely redistributed by e-mail
or in print for any not-for-profit purpose provided that the entire text
(including this notice and the author's attribution) is reproduced in full
and without alteration. Please redistribute this text widely.

If you would like to link to this paper, please do so by using the links to
my site provided rather than a reposting of this text on a third-party
website as only the version on my site has live links and will continue to
be updated.

Thank you to all those M.E. advocates who offered valuable criticism and
suggestions as I was writing this paper.

Best wishes everyone,
Jodi Bassett
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--
'Any disease process that has major criteria, of excluding all other disease
processes, is simply not a disease at all; it doesn't exist. The CFS
definitions were written in such a manner that CFS becomes like a desert
mirage: The closer you approach, the faster it disappears.' Dr Byron Hyde
M.D. 2006

 The current confusion over the name in the US is that CFS, the fabricated
condition that somehow became officially synonymous with the real disease
Myalgic Encephalomyelitis, is to be cunningly renamed Myalgic
Encephalopathy. The problem is that both names share the initials ME, and
since Myalgic Encephalopathy will retain the terribly misleading CFS
criteria this name is nothing more than a clever diversion to draw our
attention away from the real issues. John Anderson, M.E. advocate
The entire concept of a "New Name" is wrong. There is no need for a "new
name" for an "old falsehood". There already IS a correct name, Myalgic
Encephalomyelitis with a correct ICD code. We need the correct name and the
proper definition, not a new face on an old lie that still functions to
obscure and deny the reality of Myalgic Encephalomyelitis. We need to
educate ourselves, families, doctors, social service people, politicians,
journalists, etc about the existing disease Myalgic Encephalomyelitis. Not
fall into yet another ploy of those who have hidden the truth. M. Beck, M.E.
patient since 1983
 

Chemical Exposures in Gulf War Caused Veterans' Illness

By Crystal Phend, Staff Writer, MedPage Today Published: March 11, 2008 Reviewed by Zalman S. Agus, MD; Emeritus Professor  University of Pennsylvania School of Medicine. Earn CME/CE credit for reading medical news

Audio: Beatrice A. Golomb, M.D., Ph.D. University of California, San Diego   SAN DIEGO, March 11 -- Chronic illness among Gulf War veterans may be caused, in part, by exposure to acetylcholinesterase inhibitors, including pesticides and nerve agents, according to a systematic review. These chemicals have consistently been linked to illness in epidemiologic and animal studies and in dose-response to exposure among service members, reported Beatrice A. Golomb, M.D., Ph.D., of the University of California, San Diego, online in theProceedings of the National Academy of Sciences.  The evidence satisfied criteria for causality, suggesting exposure to this class of chemicals "may account for some or perhaps much of the excess illness seen in Gulf War veterans," Dr. Golomb said. Action Points   Explain to interested patients that acetylcholinesterase inhibitors are a class of chemicals that are used in agriculture as pesticides and for other industrial and military purposes.    Note that Gulf War veterans' symptoms are frequently in domains controlled by cholinergic systems. This has implications for current and future deployments as well as in some civilians with unexplained chronic multisymptom complaints, she said.   Persian Gulf War veterans have had a higher prevalence of chronic multisymptom health problems (26% to 32%) than those sent elsewhere or not deployed. The symptoms typically include fatigue, muscle or joint pain, memory problems, trouble sleeping, rash, and breathing problems.   Since these problems are in systems governed by central and peripheral cholinergic systems, the wide exposure of troops to organophosphate and carbamate acetylcholinesterase inhibitors has been suspected as a cause.   Some military personnel were exposed to the nerve gas sarin while destroying Iraqi weapons. As many as 250,000 among the about 700,000 deployed also took pills containing the carbamate pyridostigmine bromide to protect against potential nerve agent exposure.   Pesticides, particularly carbamates and organophosphates, were also used aggressively to control sand flies and other insects, which the Department of Defense has estimated led to overexposure of at least 41,000 service members.   Studies have reported a significant, typically strong, association between acetylcholinesterase inhibitor exposure and chronic illness with high consistency, Dr. Golomb found in her analysis of 115 papers on Gulf War illness and acetylcholinesterase effects.   In some of these studies, exposures related to acetylcholinesterase inhibitors accounted for all of the strongest odds ratios for Gulf War illness as defined by the CDC. In others, these exposures were the only ones significantly linked to multisymptom illness after multivariable adjustment.   These risks among Gulf War veterans include:   Pyridostigmine bromide pills were associated with 1.6-fold increased risk of mild to moderate symptoms (P=0.010) and 2.9-fold increased risk of severe illness (P=0.006). Insect repellent was associated with 1.7-fold (P=0.001) and 2.4-fold (P=0.006) increased risk of mild to moderate and severe symptoms, respectively. Chemical warfare agent exposure, such as sarin, was associated with 2.3-fold increased risk of mild to moderate illness and 3.5-fold increased risk of severe symptoms (both P<0.001).   Although exposure to nerve agents and pesticides was hard to quantify, one study linked neuropsychological function and loss of white matter and total brain volume with higher estimated organophosphate nerve agent exposure.   Studies showed that the health of U.S. service members in the Gulf War worsened the higher their cumulative dose of pyridostigmine bromide pills. A similar study of Australian veterans showed worse physical, but not mental, health with increased use of the pills.   The associations were also supported by studies that found greater illness among veterans with genetic variants that reduce enzymes involved in clearance of organophosphates and pyridostigmine bromide from the body.   Notably, civilians exposed to acetylcholinesterase inhibitors in occupational settings, particularly agriculture, had symptoms mirroring those of Gulf War veterans with higher rates of fatigue, muscle complaints, and cognitive dysfunction and more overall symptoms compared with controls.   Likewise, people exposed to sarin gas during terrorist attacks in Japan have been reported to have long-term problems with cognition, fatigue, and muscles, "hallmark symptoms of ill Gulf War veterans," Dr. Golomb said.   Animal studies showed acetylcholinesterase inhibitor exposure altered regulation of cholinergic function and low-level sarin exposure, in particular, persistently altered DNA, protein content, and gene expression.   Together, this evidence draws a "plausible and substantially supported connection" between acetylcholinesterase inhibitor exposure and illness, Dr. Golomb concluded.   "We should be cautious about exposing people, whether military personnel or civilians, to these chemicals," she said.   The findings also suggest that Gulf War veterans may be at increased risk of amyotrophic lateral sclerosis (ALS) as well as Parkinson's disease, which have both been linked to pesticides in other studies although in agricultural rather than military settings, she said.   "One of the implications of this research is that we should perform surveillance for Parkinson's disease in Gulf War veterans," Dr. Golomb added.   Dr. Golomb reported no conflicts of interest.

Primary source: Proceedings of the National Academy of Sciences Source reference: Golomb BA "Acetylcholinesterase inhibitors and Gulf War illnesses" PNAS 2008; DOI: 10.1073/pnas.0711986105.

RSM 28th April 2008 

From:  DEnlander@aol.com   

  
The Dean
Royal Society of Medicine 


Sir.


I think it is absurd for the Royal Society of Medicine
to promote a meeting on Myalgic Encephalomyelitis
where the  predominant thrust is the psychiatric
aspect of this physical disease.
  
There is enough physical evidence over the past fifty
years, dating from Melvin Ramsay's work in 1955,  to
show that this is a primary physical problem with
secondary psychological depression.
     
I would presume that the august body, R.S.M., 
would not hold a cancer forum staffed predominately
with psychiatrists. The notion that psychiatrists
could treat cancer on the thesis that secondary
depression in cancer is the cause and therefore the
prime treatment modality.  Perhaps you see the
absurdity .
   
Please invite clinicians and physicians to speak at
your meeting on the medical aspects and medical
treatment of M.E., there happens to be a medical
conference on this very subject in Cambridge a few
days later, some of the clinicians speaking at this
meeting may be interested in participating in the
R.S.M.
 

After all, you are a medical and not a psychiatric
society.
 

Derek Enlander, M.D.,M.R.C.S., L.R.C.P. (Lon)
New York.
 

RSM demonstration 28th April 2008


Additional information and updates on this demo will
be posted at:

http://readmeukevents.wordpress.com


On 28 April the Royal Society of Medicine is holding a
conference on "Chronic fatigue syndrome" for
members of the RSM and health care professionals.
Go to  http://www.rsm.ac.uk/academ/cfs.php   for
Registration information, Speakers and Conference
Session details.



The RSM says:

"The aim of the meeting is to take a broad look at
chronic fatigue syndrome, examining its nature and
definition, pathophysiology, epidemiology, clinical
assessment and diagnosis, the patient perspective,
and various approaches to treatment. This is a
scientific conference and there will be an emphasis
on an evidence-based approach throughout."



The final programme says:

"Chronic fatigue syndrome is a common and
debilitating illness which can persist for years.
Despite extensive research, the nature and
pathogenesis of the condition remain enigmatic.
There is continuing uncertainty and controversy
concerning the physical and psychological
components that may contribute to the initiation and
perpetuation of the symptoms of chronic fatigue
syndrome.

"Those attending the meeting will gain
understanding of the various aspects of CFS being
discussed, and be better able to help people
suffering from this disabling condition. The
conference is intended for all health professionals
who are involved in the assessment and treatment of
those with CFS."



Here's the line-up of speakers:

*Professor Peter White, Barts and the London Queen
Mary School of Medicine and Dentistry (What is CFS?)

*Dr Anthony Cleare, Institute of Psychiatry, London
(Pathophysiology)

*Professor Simon Wessely, King's College London
(Epidemiology)

*Professor Chris Dowrick, Liverpool (Physician's
approach)

*Professor Matthew Hotopf, Institute of Psychiatry,
London (Psychiatrist's
approach)

*Professor Richard Baker, Leicester University (NICE
Guidelines)
*Professor Rona Moss-Morris, University of
Southampton (CBT and GET)

*Dr Alastair Miller, Royal Liverpool University
Hospital (What drugs can I use?


and Session chairmen:

*Dr John Scadding, from the Royal Society of
Medicine

*Professor Anthony Pinching, Peninsula Medical
School, Cornwall

*Professor Mansel Aylward, Unum Provident Centre
for Disability, Cardiff
University

*Professor Kam Bhui, Department of Psychiatry,
Queen Mary School of Medicine and
Dentistry


...more psychs than you can shake a stick at.



A peaceful demonstration will be held on the
afternoon of 28 April outside the Royal Society
of Medicine.


London based event organiser, Gus Ryan writes:

"After notifying the Met Police, we have been given
the go ahead for a demonstration outside the Royal
Society of Medicine on Monday 28th April 2008. This
will coincide with a meeting about "Chronic Fatigue
Syndrome". The meeting will be heavily attended by
prominent people in the field of mental health.

"The demonstration will be static and will take place
at the two entrances to the RSM, Wimpole Street
and Henrietta Street between 1pm and 6pm.  Go to
http://tinyurl.com/2frjzm   for Location map.

"A presentation, yet to be decided on, may take
place at some point during the day and
banners/placards will be allowed. Flyers/handouts
will also be allowed.

"I have promised my liaison officer at the Met that
we will be on our best behaviour and I trust that the
day will pass peacefully.

"As organiser, I am in the process of appointing two
stewards - one for each entrance - and will be
overseeing the events for the day."


Any enquiries can be directed to Gus Ryan
creamcrackereduk@yahoo.co.uk

Launch video at  http://tinyurl.com/3xaas4  or
http://uk.youtube.com/watch?v=IBRC9SzmKNk


Suzy Chapman
http://readmeukevents.wordpress.com
 

CBT for ME/CFS does not improve patients' well-being: more
patients report deterioration of their condition rather than improvement!

Cognitive behavior therapy for
chronic fatigue syndrome (ME/
CVS) from the patient's perspective

(Article in Dutch) 

Authors: Drs. M.P. Koolhaas, H. de Boorder,
              Prof. Dr. E. van Hoof

Date: February 2008

ISBN: 978-90-812658-1-2


Information:  Drs. M.P. Koolhaas
                    m.p.koolhaas@consunet.nl



Abstract


Background

In recent years, Chronic Fatigue Syndrome, also
known as Myalgic Encephalomyelitis (ME/CFS), has
been getting a lot of attention in scientific literature.
However its aetiology remains unclear and it has yet
to be clarified why some people are more prone to
this condition than others.

Furthermore, there is as yet no consensus about the
treatment of ME/CFS. The different treatments can
be subdivided into two groups, the pharmacological
and the psychosocial therapies. Most of the scientific
articles on treatment emphasize the psychosocial
approach.

The most intensively studied psychological
therapeutic intervention for ME/CFS is cognitive
behaviour therapy (CBT).

In recent years several publications on this subject
have been published. These studies report that this
intervention can lead to significant improvements in
30% to 70% of patients, though rarely include
details of adverse effects.

This pilot study was undertaken to find out whether
patients' experiences with this therapy confirm the
stated percentages.

Furthermore, we examined whether this therapy does
influence the employment rates, and could possibly
increase the number of patients receiving
educational training, engaged in sports, maintaining
social contacts and doing household tasks.


Method

By means of a questionnaire posted at various
newsgroups on the internet, the reported subjective
experiences of 100 respondents who underwent this
therapy were collected. These experiences were
subsequently analysed.


Results

Only 2% of respondents reported that they
considered themselves to be completely cured upon
finishing the therapy.

Thirty per cent reported 'an improvement' as a result
of the therapy and the same percentage reported no
change. Thirty-eight percent said the therapy had
affected them adversely, the majority of them even
reporting substantial deterioration.

Participating in CBT proved to have little impact on
the number of hours people were capable of
maintaining social contacts or doing household
tasks.

A striking outcome is that the number of those
respondents who were in paid employment or who
were studying while taking part in CBT was adversely
affected. The negative outcome in paid employment
was statistically significant.

CBT did, however, lead to an increase in the number
of patients taking up sports.

A subgroup analysis showed that those patients who
were involved in legal proceedings in order to obtain
disability benefit while participating in CBT did not
score worse than those who were not. Cases where a
stated objective of the therapy was a complete cure,
did not have a better outcome. Moreover, the length
of the therapy did not affect the results.


Conclusions

This pilot study, based on subjective experiences of
ME/CFS sufferers, does not confirm the high success
rates regularly claimed by research into the
effectiveness of CBT for ME/CFS. Over all, CBT for
ME/CFS does not improve patients' well-being: more
patients report deterioration of their condition rather
than improvement.

Our conclusion is that the claims in scientific
publications about the effectiveness of this therapy
based on trials in strictly controlled settings within
universities, has been overstated and are therefore
misleading. The findings of a subgroup analysis also
contradict reported findings from research in strictly
regulated settings.


Source: Medisch Contact, Feb 2008
 

It's Time for the United States to Adopt

the Canadian M.E./CFS Definition!

Please Join Mary Schweitzer's blog to Discuss this Important Issue:

I have created a blog to discuss adopting the Canadian consensus diagnostic and treatment criteria in the United States, along with the name used in that document, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (which can be found in G93.3 in the World Health Organization's codes of diseases, ICD-10).

The blog is here:

http://canadaconsensus.ning.com/

(Please forgive the stupid ads; I haven't figured out how to get rid of them yet!)

Eventually (when I figure out how to do it) there will be a petition and a vote.  But the decision about the name and its meaning will not have been made in advance by a committee. 

I only ask that those who participate be as polite as if they were all sitting in the same room.  If not, I will not hesitate to delete a rude post - although I will suggest a more polite rephrasing to the poster. 

ALL subjects relating to the name are open, including the combination names that some have preferred - neuro-endocrine-immune disorder, for example. 

I was hoping not to have to restart this debate, but there are issues that need to be discussed before the Fair Name petition <http://www.afairname.org/index.cfm> proceeds further.  I had myself signed the petition assuming it referred to the Canadian consensus name, which is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.  I would not have signed it had I thought "M.E." stood for whatever you wanted it to. 

But this is a choice, and not just mine to make.  So - go get a name, a password (write the password down in your home phone book!) and ... post away.   Have fun, but play nice.

Mary Schweitzer, Ph.D.
 

Co-cure refuses to play fair!

Does anyone see any semblance of a discussion in our announcement to Co-Cure?

Submitted to Co-cure on Saturday, February 02, 2008:

"A Fair Name" Doesn't Play Fair?

Tom Hennessy's email box as well as mine have been flooded with patient
advocate's correspondence decrying that our posts (Below) to the "A Fair Name"
website message board have been removed. Others who replied to our posts
say they have been banished from the site as well. Is "A Fair Name"
really an autocracy? You be the Judge. Our removed posts can be found at
the NEW R.E.S.C.I.N.D. website:

http://www.rescindinc.org/

Stay tuned!

Tom & Jerry
(Yep. Just like the cartoon!)

Co-cure's reply:

Hello Tom and Jerry,

Co-Cure is going to stay out of this argument.

It's one thing to post arguments about one name or another, but Co-Cure
is not meant for discussions of any type, and most especially of how
other web sites and discussion groups are doing their job.  People who
choose to use other sites and lists will have to deal with the
administration of those places or use actual discussion groups to
compare ideas with others.

Margaret Bailey
Co-Cure Moderator
Moderators' email:  co-cure-mod@listserv.nodak.edu
http://www.co-cure.org



 

As submitted and subsequently removed from http://www.afairname.org/

The real history behind the Name change movement!

For the past six months, I have enlisted GOOGLE alerts
to forward me articles about MCSS, FMS, GWS, ME and CFS.
I will soon add Lyme disease to the mix.

Sadly, most of these articles back up what I was saying
almost 20 years ago!

As you might know, a small group of us (about a dozen people)
started May 12th back in 1992. My Dad was a lobbyist for oilman
J. Paul Getty and I tried to convince Marc Iverson and others
to start a lobby day back in 1988, just months after I collapsed
after eating tainted raw oysters at a restaurant.

It took 4 years to start lobby day on May 12th, and of course,
since I relapsed so badly trying to organize the first May 12th
and lobby days, the CAA took over and have claimed credit for
something they fought against initially.

So what else is new?

Also, I said at the VERY first International CFS meeting
on April 15, 1989, that "if you 600 doctors in attendance
today, do NOTHING else, then get a correct definition and
"change the goddamn name".

I said that Webster's dictionary says "to define is to make
something clear and distinct to differentiate".

I said that there was NOTHING clear and distinct about
waiting for someone to become sOOOOO ill, that they were
50% or more housebound and bedbound for six consecutive
months! with NO other illness.

100% of the people I knew with ME/CFS had more than one
diagnosis.

100% this was MADNESS!

I said that the host of this conference should even lock
the doors of the hall and NOT let the attendees out of the
room until they agreed to drop the "F" word... (we had just
had a 45 minute delay in the conference because of a fire
alarm, so saying that LOCKING the doors was what they needed
to do was a scary thought indeed!)

It was the end of the day, and most attendees were tired...
but they started cheering and hooping and hollering when I
said "we need to change the goddamn name TODAY!"

Of course, they did no such thing.

In the past 20 years, RESCIND, Inc. and many others have
followed us. We sold hundred's of coffee cups at medical
conferences that said "Help us Stop the pain, end the shame,
change the name, and get back in the game of life!"

We sold hundreds of t-shirts with the same message. We printed
almost 1,000 buttons with the international symbol of a red
circle with red line across the word CFS.

We spoke at most conferences. We posted a petition online
demanding the recognition of Myalgic Encephalomyelitis with
more than 8,000 signatures. It can be found at a link from
our main site here.

All of the sudden, in 2007, the pill pusher Rich Carson of
the Pro-Health CFS buyers club decides he has a novel idea,
that no one has thought of before..... a "change the name
movement".

We pushed dr. Phil Lee, the number two man at the US department
of Health and Human services to "change the name" of CFS back
in 1994. He demanded a new group be found to accomplish this
task.

The newly designated head of the CAA, Ms. Kim Kenney was
appointed to contact the top 175 interested parties or
groups regarding the name change.

Of course, the founder of the "change the name" movement,
Me, was not invited. Neither was Roger Burns who had done
online polling showing the almost universal disgust the name
"CFS". Neither was anyone from the Medical professionals with
ME/CFS. So, it was a sham from the start.

But, we still persisted behind the scenes. And we Pounded on
Lenny Jason enough that he accepted the RESCIND plan to divide
these illnesses into at least 4 subgroups. I wanted a group
for MCSS, one for FMS or pain centered, one for virally
induced (like ME-itis), and one for multiple triggers (like
Gulf war Illness). He followed our lead and tried the name
"neuroendocrineimmune disorders" with 4 subsets.

Dr. David Bell, who had been co-opted by Reeves and company
at the CDC refused to even have a public discussion of the
name change... after three years of work by a group appointed
by their very own CFS government committee!

This is a crime against humanity. It is ALL about the money.
Big corporations rule the world.

The politicians are well meaning puppets in their minds, but
they are whores and prostitutes in actuality.

Massive, Multinational insurance companies like UNUM, which
once was a very honorable company, have become large criminal
organizations that should be prosecuted to the full extent
of the law as the criminals they have become.

Millions of people worldwide are sick with ME. Many of those
of us with ME are homebound, and even bedbound. I have been
bedridden 23 hours a day for 20 years.

I need to take morphine daily to stay alive. For 11 years,
I took up to six patches of Fentanyl duragesic patches every
three days just to stay alive. The doctors told me that I was
taking MORE pain medicine than a dying cancer patient who's
tumors were crushing his very bones.

And I asked the doctors and pharmacists: "Do I sound like I
am drugged up? am I not lucid? And they replied that I was
one of the most articulate patients in their practice. And
when I was drug tested, it always came back "normal
therapeutic levels". This means that my pain receptors were
so inflamed that I real WAS in the excruciating, burning,
stinging nerve pain that I claimed to be in.

The FACT is that Myalgic Encephalomyelitis is one of the
most serious illnesses on the face of the planet.

The FACT is that we have been lied to, mistreated, and
abused by the very people who are paid to protect us.

The FACT is that CFS (which is NOT ME) is the third lowest
funded illness at the US National Institutes of Health.

The FACT is that the Centers for Disease Control is
criminally liable for deliberately making a faulty definition
in 1988 without any REAL ME experts on the panel. Virtually
NONE of the original members of the Holmes Criteria group
had NEVER treated a patient in a clinical setting.

The FACT is that I was the first, the longest serving and
the most articulate spokesman for the "change the name
movement".

The FACT is that US based physicians have failed their
patients and their medical oaths to "First do no Harm!"
by allowing this atrocious CFS definition to be adopted in
1988, and then they compounded their errors in 1994, when
they made a bad definition worse.

Now, in 2007, they have bastardized the patient cohort
further to claim that up to 2.5% of the US population has
"CFS".

The FACT is that in my original speech to those 600 doctors
at the First CFS conference in April of 1989, I presented a
poster with a picture of an iceberg floating just under the
surface of the ocean. On my poster I showed the CDC estimate
of "4 to 10 people per 100,000" as the TIP of the iceberg.
I claimed that there were at least 3 levels of ME/CFS.

I said that level 1 was "people who were homebound or
bedbound. My estimate at least 250,000 Americans".

I said that Level 2 was "People who could only work or
attend school on a part time basis. they needed help with
shopping, cleaning, and daily activities. My estimate
500,000 people.

And I said that Level 3 was "people who were One chemical,
viral, or bacterial insult away from complete and crushing
disability.

My estimate 5 to 6 million Americans. This was in 1989!

I said that the go-go 1980's and the introduction of more
than 50,000 various chemicals introduced in this century,
the massive increase of vaccines which were NOT often tested
in combinations.

I believed that a negative synergistic paradigm was going
to change medicine from chasing ONE mysterious virus (a la
HIV, this was 1989) to looking for ANY insult against a damaged
or predisposed host.

I quoted Louis Pasteur who said more than 100 years ago,
"The antigen is nothing, the terrain is everything!" I think
Pasteur was right!

It is a FACT that I took a LOT of heat for saying that I
thought these conditions were a case of "different insult,
same result".

I presented a poster of a train on a track. I said that the
immune system was one rail of the track and that the Central
nervous system was the second and parallel track. I said that
the railroad ties were Genetic predisposition, psychological
predisposition, vaccine exposure, viral exposure, various
infections, chronic stress, poor diet, unrestorative sleep,
accidents, chemical poisoning, food poisoning, other toxins.

I said that the train can run along rickety or rotted tracks
for a period of time, but if you put a bad batch of fuel in
the train, the engine could misfire and then the train would
buck. And if this happened just as the train was passing
over these railroad tracks, the railroad ties could crack
and split, the rails would splay out and the train would
derail.

And I said the hardest headed, hardest charging, type A
personalities would derail the worst.

Before I started my presentation in Front of the top Docs
of the Day, including Dr. Phil Lee, Dr. Paul Cheney,
Dr. Dan Peterson, Dr. David Bell, Dr. Jay Levy, dr. William
Reeves, et al, I said "I feel like a minor league pitcher
being brought up to pitch in the Hall of Fame game.... I
don't feel qualified to speak in front of the masters of the
game...".

But when I finished, Dr. Tony Komaroff who was chairing that
part of the conference said "I just want to tell the audience,
that this was a Major league pitcher throwing strike outs in
the World Series!"

Now, almost 19 years later, Dr. William Reeves of the CDC is
using American Tax dollars to do detailed blood tests, genetic
tests and psychological tests on new military recruits to try
and find out who might be more likely to come down with future
versions of "gulf war illness".

It is also a FACT, that I was the first person anywhere to
link "gulf war illness" with "all these whiney white women
who can't handle stress" (meaning CFS patients). This is on
tape. I said these comments on International TV, CNN's Larry
King Live on May 4, 1991.

I said "The US government will spend more than half a billion
dollars per day to blow Saddam Hussein back to the stone age,
but they won't spend even one million dollars per year to
treat the soldiers who are coming home sick. They have a
condition similar to what we have!".

A few years later, the brilliant Garth Nicholson, who has
published more than 400 papers on Cancer tumor cell biology
said, "Hennessy was right. Gulf war syndrome is not just
similar to CFS, it is almost identical".

A high ranking government official back in 1995 or 1996
called me at home and said "you will not believe what
happened today in a secret government meeting in Congress
about possible links between CFS and GWS.

The informant told me that the CDC's William Reeves, when
asked directly by a top Congressman "Is there any link
between CFS and GWS? that Reeves replied , "a Mr. Hennessy
and his group were right early and often. GWS doesn't
appear to be just one, new or unique illness. But it
closely resembles CFS. They might even be identical
syndromes!"

I have NEVER claimed that they were the same. I said that
they were similar and that we should use large relational
databases of symptoms and blood tests, autonomic nervous
system tests, neuroendocrine tests, objective, quantifiable,
verifiable tests that can be duplicated by even skeptical
scientists to prove that we are in fact not just disabled,
but GRAVELY ill.

As Dr. Marc Loveless said when I spoke to Dr. Alexis Shelekov
back in 1992 at the Albany Conference on CFS. I asked
Dr. Shelekov if the epidemic Neuromyesthenia that he studied
in the 1950's and early 1960's with dr. D. A. Henderson
could be the infamous "ME/CFS" of the early
1990's.

I asked Dr. Shelekov if had any treatment recommendations
for the "crippling, burning, searing nerve pain I felt all
over my body, 24/7. Pain that NEVER stops" and Dr. Shelekov
said "Tom, what you describe is worse than what we saw.
People were suffering and they aches and pains, but it
didn't feel life threatening". And I said "Dr. Shelekov,
with God as my witness, I feel like someone has twisted every
nerve and fiber in body into braids, then beaten to within
an inch of my life, all day, every day of my life. It is
brutal beyond imagination".

Dr. Shelekov looked puzzled and maybe a little sceptical.
But Dr. Marc Loveless, sitting next time to him said,
"Dr. Shelekov, this man (meaning me) is telling you the truth.
I have treated more than 2500 AIDS and CFS patients over
the past 12 years. and my CFS patients are MORE sick and
MORE disabled, every single day, than my AIDS patients are,
except in the last two weeks of life!"

I immediately said to Dr. Loveless that "YOU have to use
that line in every speech you give on this illness for the
rest of your life!" (in 1994, Dr. Loveless gave this same
testimony under oath to the US Congress).

More later... hands cramping too much to type more now...

TMH

As submitted and subsequently removed from http://www.afairname.org/ 

Another petition?

Under what rock have "Our Advocates" been living? There's been a petition for a fair name available for quite some time. A name without the "F" word in it. The original name. This petition has over eight thousand signatures and can be found at:


http://www.petitiononline.com/MEitis/petition.html
 

JG

Jerry's thought's on "A Fair Name" change

The following was actually posted to Co-cure prior to the announcement of afairname.com

Many advocates and physicians worldwide have already given extensive and
brilliant rationalizations in opposition of the CFS Name Change Advisory
Board's decision to rename Myalgic Encephalomyelitis or Chronic Fatigue
Syndrome to Chronic Fatigue Syndrome/Myalgic Encephalopathy at the recent
IACFS conference. The more than eight thousand signatures on the  Petition
to United States Department of Health and Human Services, National
Institutes of Health, and Centers for Disease Control calling for the
Recognition of  Myalgic Encephalomyelitis alone speak volumes! The petition
can be found at  http://www.rescindinc.org/me-petition.html

Chronic Fatigue Syndrome/Myalgic Encephalopathy is just one more of a myriad
of names for this illness which was acceptably named Myalgic
Encephalomyelitis decades ago and is "officially" recognized the world over.
An M.E. physician titled one of his books on Chronic Fatigue Syndrome "The
Disease of a Thousand Names." Now we are looking at one thousand and one.

The committee and those who agree with its decision claim that
encephalopathy is the more correct term because they "believe" there is no
inflammation present and encephalopathy embraces that "belief." However,
this new name does not address the numerous other organ systems affected by
this illness so why be so particular about whether or not there is
inflammation? In fact there is a quote by Dr. Nancy Klimas that states
"...now there's proof that inflammation occurs in the brain." She goes on to
say "and there's evidence that patients with this illness experience a level
of disability that's equal to  that of patients with late-stage AIDS,
patients undergoing chemotherapy, or  patients with multiple sclerosis."

What is extremely disconcerting is that members of this committee have
endorsed Myalgic Encephalomyelitis in the recent past. Some of whom were on
the Canadian Expert Consensus Panel that put together the first clinical
case definition for the disease known as Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome. And others who wrote "A Pediatric Case Definition for
Myalgic Encephalomyelitis and Chronic Fatigue Syndrome."

Once again the rest of the world is light years ahead of the United States
and, not surprisingly, Canada is leading the way with its case definition.
Let's just recognize Myalgic Encephalomyelitis for what it is and has been
for the last fifty years and adopt the outstanding Canadian case definition.
If or when a cause or causes are found and subgroups are filtered out, then,
and only then, will anybody appropriately be able to rename this illness or
the illnesses that is now known as Myalgic Encephalomyelitis.
 

JG

A "Must See" Video!

http://www.youtube.com/watch?v=nb-mkFxRpGM

WHEN WILL THEY EVER LEARN?

by
Gurli Bagnall
 
When a moral debate  is in progress, the views of those who are affected are
often ignored or dismissed as irrelevant.  Be the latter six or sixty, they
are all regarded as minors who have no legal say in the decision making
process.

A good example is the voluntary euthanasia debate. The conscience vote cast
by politicians is often determined by personal religious beliefs which
override the beliefs of all others including the terminally ill.
Those in the medical profession who argue vehemently against voluntary
euthanasia,  do so on the grounds that, ³I¹m here to save lives!  Not to
kill people off!²  If only their ethics were as strong when committing one
of those many preventable medical ³errors² which contribute to the
iatrogenic epidemic.

Common to nearly all who argue against,  is the use of the word "euthanasia"
without qualifying it by ³voluntary².  This gives the impression that a
death sentence has been passed by others rather than death being the choice
of someone suffering unbearably.

Such strategies are dishonest and whatever the case, if it can only be
argued  dishonestly, then there is no case.   A patronizing attitude is in
no way, shape or form,  kindness, and it generally hides an