

May 12th: Celebrating
Eighteen Long Years!
R.E.S.C.I.N.D.
Repeal Existing Stereotypes for Chronic,
Immunological and Neurological Diseases
Leaders in the Name Change Movement and Originators of:


Sign The
Petition for
the Recognition of
Myalgic Encephalomyelitis
Accomplished singer, song writer and musician Susan Wenger,
of the band Cinder Bridge, has generously donated a song about
M.E. to R.E.S.C.I.N.D.
Please follow this link to learn more:
Everybody Knows About ME


PLEASE sign our M.E. petition and write the NIH and CDC and here is a template.
Thank you to Debbie Anderson!
Your Name
Your Address
Your Phone Number
Date Written
Thomas Frieden, M.D.
Department of Health and Human Services
Centers for Disease Control
Atlanta, Ga 30333
Dear Mr. Friedman:
I sent the petition that asked for her
to compel the CDC to RECOGNIZE the M.E.
definition to be in the U.S to Ms.
Sebelius. Apparently, she passed the
buck to you, and you replied by quoting
codes.
So, let’s talk about the codes.
You stated the codes for benign ME and
CFS are under the code G.93.3 in the
ICD-9-CM. In actuality, Benign ME is
listed in the ICD-CM under the code
G93.3, Diseases of the Nervous System
and Sense Organs. CFS however, is listed
under the code R53.82, Signs and
ill-defined conditions.
We asked for recognition of the M.E.
definition. To RECOGNIZE means
(Government, Politics & Diplomacy) to
give formal acknowledgment of the status
or legality of.
Yet on your website, when I searched for
M.E., it pulled up the page on CFS. Your
website page on CFS definitely states
that M.E. is not CFS. However, there is
no page for M.E., so that doctors can
know what tests to order for an
immediate diagnosis. There is no page
that lists symptoms. There is no
indication by our government at all,
that they are taking seriously the
health of millions of sufferers of M.E.
Millions of people are being
misdiagnosed because your agency has not
RECOGNIZED M.E. We are asking that you
RECOGNIZE the definition of M.E. so that
sufferers can receive a proper
diagnosis. If the illness is recognized
and diagnosed early enough, sufferers
have a chance to recover. This will save
the government millions of dollars in
disability payments.
We need a formal acknowledgement of the
status or legality of M.E. This would be
achieved by putting up a page on the
disease M.E.
As to the blood ban issue, the WPI will
find the viral cause for M.E. and all of
those sufferers who have been mis-diagnosed
with CFS. Eventually, they will find a
treatment protocol, with or without your
help. The Whittemores have a daughter
who suffers. The reason I wrote to all
the women in power is because they
understand what a mother will do to save
their child. Annette Whittemore will not
stop until she has a treatment. Your
agency will then have to face the
consequences of allowing the public to
deliberately be infected. Not
cautiously, but deliberately. Is it not
wiser to err on the side of caution, as
Canada, Australia, and New Zealand have
done?
I certainly look forward to your reply
Sincerely,
Your Name Here
CC: Secretary Kathleen Sebelius
First Lady Michelle Obama
Second Lady Jill Biden

True quotes from Simon Weasally over the years!

Here is a link for the XMRV petition written by Carlos Gonzalez:
http://www.petitiononline.com/go1315/petition.html
TMH

There is more TRUTH in this few minute video regarding
M.E. and CFS,
than has come out of our own CDC in the past 20 years!

Please check out this interesting site from the UK. it is
called "CFS is our Resistance"
http://www.cfstheresistance.com/

Greg Crowhurst
www.stonebird.co.uk
(The Lived Experience of Severe ME)
A Great link to a husband and wife team and their
excellent site. A brilliant and compassionate, but heartbreaking
tale, told in both in wrenching pictures, and heartfelt words.Greg
and Linda demonstrate in very honest, and graphic terms how it is
too suffer from a severeversion of M.E. and how it affects the
caregiver as well.
Edvard Munch has nothing on this team.
One picture can say a thousand words. These
pictures describe a lifetime!It physically HURT to view their site,
but it also made me feel alive as well. Seeing their passionate
paintings, and repeating out loud their justifiably angry words gave
me strengh to NOT give up, but to go on...
A few words to ALL who suffer from M.E. all over
the world. There are finally some cracks in the wall of ignorance we
must face every day.
There are finally some people who do NOT trust us,
who are beginning to duplicate the groundbreaking studies of the WPI,
the Cleveland Clinic, and even some top NIH scientists and world
renowned retrovirologists...
Please do NOT give up the fight!
Now, more than ever, We need to Unite
and NOT give up the fight!
all the best to those who fight on.
and to those who have Passed on...before us..
We will see them again...

Hey Gang, THANKS for fighting for US. PLEASE don't give up
the fight!
http://www.youtube.com/watch?v=q0MTNRpupLU

Why is it important to raise
awareness about Myalgic Encephalomyelitis (ME)?
Author: Nicola K. Reiss
www.nickyreiss.blogspot.com
Why am I making such a fuss about
this disease and why should you listen to me? The first reason is that
this is an illness, most likely caused by either by an enterovirus (like
polio) or possibly by a retrovirus (like HIV), which anybody can get –
you, your child, your partner, your friend, your lover. From research
and experience we know that exercise of any kind makes the illness
worse. Your doctor doesn’t know this. Doctors around the world are
trained neither to recognize the symptoms of ME, nor how to treat it.
There is no cure. Your government is spending no money on bio-medical
research into prevention or treatment of this devastating neurological
illness that affects more people than MS. The suicide rate for people
with ME is unacceptably high; people have died of ME in epidemics, but
most deaths from ME go unrecorded as they are (like deaths from AIDS)
due to related conditions such as cancer and heart disease.
The second reason to listen is to
protect children and young people with ME from dangerous treatment, from
an unnecessary worsening of their condition, and from possible forced
removal from their families (yes, it happens). Children are particularly
vulnerable with this illness, and children as young as five have been
known to get it. Because there are as yet no easy tools for diagnosis,
such as a simple blood test, children are frequently not believed when
they complain of feeling unwell. In both the UK and the USA there are
cases of social services forcibly removing children from their families
and placing them in psychiatric units, as if they were mentally ill.
Having just given away kittens I am living with an upset and bereaved
mother cat – I cannot begin to imagine the anguish of caring parents
whose sick child has been forcibly removed from their care; yet this is
happening in our societies, to children sick with Myalgic
Encephalomyelitis. ME is (like MS) a neurological illness, identified
and classified as such by the World Health Organization (WHO ICD- 10
G93.3), yet misinformation and obstruction by psychiatrists and
insurance companies has blocked bio-medical research into the condition,
and has ensured that medical doctors remain in ignorance, or are unable
to treat ME patients appropriately. If you are in any doubt about these
statements I encourage you to read the Professor Malcolm Hooper report (http://www.meactionuk.org.uk/magical-medicine.pdf)
or the book Osler’s Web by Hillary Johnson (available from
Amazon). Look up the names of Sophie Mirza and Lynn Gilderdale, young
women both dead from ME, both mistreated by the health authorities in
the UK. Read about Alison Hunter who died of ME aged 19 in Australia, or
read about teenager Ryan Baldwin, forcibly removed from his family by
social services in North Carolina on 1/23/2009 (now back home and doing
well).
ME may not kill you straight away;
it is not as scary as ebola or malaria or dengue fever; but it will take
away your life as you know it. Although some people only suffer from
mild symptoms and are able to continue working and enjoy some kind of
(usually restricted) social life, approximately 25% of people with ME
are completely bedridden, living in darkened rooms, unable to feed or
clean themselves, totally dependent on family members. These are the
people with ME whom you don’t see. Others, like myself, are visible in
the street once in a while (I have the energy, on average, to leave my
flat twice a week), but we have no social life – we can no longer visit
cafés or restaurants, we cannot enjoy a walk on the beach or a day out
shopping or a family meal. These simple activities are too painful.
What can you do?
Learn to recognize the symptoms of
ME – early diagnosis may prevent the illness from becoming severe.
Understand that exercise makes the illness significantly worse. If you
suspect that you, or someone you know, might have ME, stop all exercise
and do whatever it takes to get a correct diagnosis. Symptoms of ME
include (but are not limited to): dizziness, brain fog (a fuzzy feeling
in your head to varying degrees), orthostatic intolerance (you find it
uncomfortable to remain standing for more than a few minutes),
difficulties with concentration and memory, lack of energy, a heavy
feeling or pain in muscles, post-exertional malaise (i.e. exercise makes
you feel worse, not better), a general feeling of being unwell (similar
to flu or a bad hangover), headaches, extreme fatigue that is not
relieved by sleep, difficulties sleeping, digestive problems, extreme
sensitivity to light and noise.
Push for government funding into
bio-medical causes of, and treatment for, ME. Contact your MP, your
senator, your congressman or woman and ask them to ensure that
government funds go into the right kind of research. In the UK vast sums
of money have been wasted on research into trials of counseling and
exercise for people with ME. Would you expect counseling and exercise to
help people with MS, lupus or AIDS? No! Nor will they make any
difference to people with Myalgic Encephalomyelitis. Government funds
should be spent on research into ME in the same proportion as they are
spent on MS, lupus, AIDS, or similar diseases. All we ask for is equal
treatment – in provision of research funds, medical care, and social
services.
One last word – what on earth is
“chronic fatigue syndrome”? “CFS” is an idea constructed by
psychiatrists and insurance companies to belittle the serious illness
Myalgic Encephalomyelitis in order to avoid expensive insurance payments
or disability support payments. The correct name for the disease, as
listed by the WHO, is Myalgic Encephalomyelitis. Fatigue is a common
symptom of many illnesses – cancer, MS, AIDS, lupus, flu, and so on. It
is no more a defining feature of ME than it is of MS. Unfortunately many
people have been misdiagnosed with “CFS” by badly informed doctors when
in reality they have other illnesses that are difficult to diagnose,
such as cancer, lupus, MS, etc. For this reason it is urgent that
doctors learn how to correctly diagnose ME. For more information the
work by Dr Byron Hyde is particularly useful (see:
http://www.nightingale.ca/documents/ComplexitiesofDiagnosis.pdf)
ME is not limited to Europe,
Australasia and North America. I became ill while working in East
Africa; cases have been reported in India, and there are support groups
for people with ME (PWME) on Chinese social networking sites.
If you would like to learn more, I
recommend these websites:
Nightingale Research Foundation
(Dr Byron Hyde) http://www.nightingale.ca/index.php?target=home
The Hummingbirds’ Foundation for
M.E.
http://www.hfme.org/
ME Action UK
http://www.meactionuk.org.uk/
Invest in ME
http://www.investinme.org/index.htm
Whittemore Peterson Institute for
Neuro-Immune Disease
http://www.wpinstitute.org/
National Alliance for Myalgic
Encephalomyelitis
http://www.name-us.org/
The Young ME Sufferers Trust
http://www.tymestrust.org/
The Grace Charity for M.E.
http://www.thegracecharityforme.org/index.asp
Author: Nicola K. Reiss
www.nickyreiss.blogspot.com
Permission to repost freely: Must
NOT be edited.

The trouble with ME
Sarah Boseley
Friday May 14 2010
The Guardian
http://www.guardian.co.uk/society/2010/may/13/me-chronic-fatigue-syndrome
Kay Gilderdale helped her 31-year-old daughter to kill herself over the course
of one long December night, crushing up sleeping pills and antidepressants when
the morphine overdose she gave her to inject did not immediately work. It's
almost incredible to think that a mother and daughter could be driven to such
hellish extremes by a disease that is not fatal. Lynn Gilderdale had ME. [http://www.guardian.co.uk/uk/2010/jan/25/mercy-killing-kay-gilderdale-cleared"
title="The Guardian: Mercy killing mother cleared of murder after helping
seriously ill daughter die ]

some May 12th comments from the founder of May 12th
International Awareness Day for CIND conditions
Greetings Boys and Girls, Ladies and Germs,
Today is the 18th anniversary of May 12th, International Awareness day for
CIND (Chronic Immunological and Neurological Diseases) We included
ME/CFS, GWS, FMS, and MCSS that first year. Over the years we have added
other CIND disorders as they became known including tick borne illnesses
such as Lyme Disease, Bartonella,Babesia, and other viruses, bacteria,
microbes, chemical insults, and other toxins as they are discovered like
XMRV. The most important words in this note are the following two: THANK
YOU!!!
Thank YOU to one and all who crawled out of bed to help in any way for us to
get to an 18th anniversary! A special thanks to Roger Burns for keeping us
online for the first decade, and Jerome Greyson for keeping us online for
the second decade. And to my parents, my friend's Michael and Patrick, and
Robert who helped pay rent, and all those who fed me over the past 25 years.
Thanks to anyone who wrote or called their local, regional, or national
politicians. Thank you also to any spouse, sibling, neighbor, or friend who
helped to care for those of us who are too sick to care for themselves. It
might sound odd, but hand written, personal notes to our politicians,
newsmakers, and editorial boards of newspapers are sometimes the most
effective help you can give us.
As most of you know, since the medical experts have not been able to isolate
a single virus, bacteria, or chemical insult that triggers our descent into
this "Living Hell", most of us with diagnoses of FMS, M.E, CFS, GWS, and
MCSS, which i called Chronic Immunological and Neurological Disorders (CIND)
back in 1991 have to rely on lists of symptoms to get diagnosed. For all you
newbies out there, make SURE you keep good records of these lists. And take
those lists to the various doctors you will see before you get a proper
diagnosis. Then still keep those lists of symptoms and tests taken in a big
box, because you will need them to help win a disability case. Sadly, at
least in the USA, 90% of people who become disabled, are rejected the first
time they apply for permanent disability. About 75% are rejected on the
second application. And even when you go before a judge, (called the
Administrative Law Judge or ALJ) you only have a 50/50 chance of winning
disability. If some of you are healthy, Please google Ms. Lennie Copeland.
She was the brains behind "Living Hell", the best documentary yet produced
about people with M.E. and CFS. She lived in the bay area of San Francisco,
the last i heard. Her brother played drums in a little band by the name of
the "the Police". a copy of that should be put up on You tube!
Because i am personally so ill, i have not been able to get it together to
write up lists of things that have worked over the years..It really is
stunning to hear so called "experts" of the Weaselly school describing
various and sundry "somatic" symptoms that allegedly have no known medical
cause. He has done the same with the so called "Gulf War Syndrome" (now
called Gulf War Illnesses). In reality,it is the incompetence of the
medical establishment and NOT our fertile imaginations that are keeping us
sick. I have read more than 21,000 emails, letters, notes, treatises,
medical articles, and internet postings, and probably met more than 1,000
"sufferers" of these various disorders at medical conference across the USA
and at government meetings over the past 25 years, and to be honest, their
stories, with very few exceptioms, or outliers, don't vary by more than
10%,.. 15% at the most. I believe that the great Dr. Melvin Ramsey wrote the
best sentence ever to describe the misery of M.E. when He said,
"The degree of physical incapacity varies greatly, but the dominant clinical
feature of profound fatigue is directly related to the length of time the
patient persists in physical efforts after its onset: put in another way,
those patients who are given a period of enforced rest from the onset have
the best prognosis".
(of Course, this is exactly the opposite of what actually happens in the
U.S. and what our overworked, overwhelmed, and undertrained Doctors
recommend. When most of them are ignorant about CIND (Chronic Immunological
and Neurological Disorders) such as M.E., CFS, MCSS, FMS, GWS, and Tick
borne illnesses like Lyme, Babesia, Bartonella, Brucellosis, Giardia, EBV,
HHV6, XMRV, etc.) I can assure you that C.B.T. (Cognitive Behavioural
Therapy) and G.E.T. (Graded Exercise Therapy) might help some people, some
of the time, but they are NOT the answers to the vast majority of people who
have been SO ill, that they are homebound or bedbound for six consecutive
Months or more. 25 years ago, we were listed as having the "Yuppie Flu"
because many of us were hard charging types who spent our life savings
trying to find something, anything that could be so vicious, that it could
completely ruin our lives.
If you had most ANY other serious illness and waited until you were bedbound
for six months, i could diagnose you in 4 simple letters. D.E.A.D! It is
incomprehensible to me, that the medical establishments of the world would
accept for more than 2 decades, such stunningly incompetent work product as
the so-called Holmes -1988, Fukuda 1994, and Willy Wonka Reeves -2005
'definitions' of something that doesn't really exist. the mysterious
"Chronic fatigue syndrome". back on April 15, 1989, I gave my first public
speech about "CFS". I said that Webster's dictionary says that to "define is
to make clear and distinct, to differentiate". Then they proceed to list a
bunch of symptoms that any ill person could have. If you want to look at a
definition for the alleged "CFS", look at the Canadian Consensus Definition
from Carruthers, et al. And if you want to find an accurate definition of
Myalgic Encephalomyelitis, then google Byron Hyde,MD, of the Nightingale
Foundation. It was Byron who told me about Florence Nightingale. When i
researched the history of our little Ms. Flo, she sounded like MANY of the
nurses i have met with M.E. over the years. When i found out that her
birthday was in the springtime in the northern hemisphere, and early autumn
in the southern hemisphere, I said, "We have found our day". Since i was
already considered a "burr under the saddle" of the medical establishment, i
used the words "May 12th was chosen" and i kept my name OUT of it.
However, Today is May 12th!
To all who are still on the right side of the grass, I say Congratulations!
Send a friend to the library and ask the librarian to order a copy of
"Osler's Web"
by the great Hillary Johnson. She has a new, and updated edition out. then
Read it!
This book details the struggle of so many of us over the past 25 years.
The original editor of this book also edited "And the Band Played On" By
Randy Shilts,
a famous AIDS activist back in the 1980's. He said, "I never thought i would
say this,
but you people (meaning CFS patients) were treated worse than WE were!"
(meaning AIDS patients,
who were spat upon, denied medical treatment, thrown out of their homes,
denied fair insurance settlements and more)UNTIL, some brilliant researchers
isolated HIV, a retrovirus, that crippled, but did not kill it's victims.
However, HIV weakened the host soo much that, other opportunistic infections
killed the patient.
With M.E. and related disorders, we are often worse off. Even with the
discovery of XMRV, I personally do not
believe that any one virus, bacteria or toxin is causing all of this misery.
the famed virus hunter, Louis Pasteur
once said, "The antigen is Nothing. The Terrain is everything!" I think we
are all stuck in a case of "different insult, same result". this is BAD news
for insurance companies. If they were forced to pay fair settlements to all
of us who are too sick to work, but just not quite sick enough to die, they
would go bankrupt. Most of these big, multinational Insurance companies have
gambled their clients' premiums for the past decade on esoteric financial
instruments called CDO's. These Financial "instruments of mass destruction"
as Warren Buffett calls them have wiped out the profits of the big insurance
companies. They even wiped out the equity of AIG, one of the largest
Insurance companies ever created. And Places like UNUM/Provident Insurance
do not have the funds to pay fair disability claims for us. So, they try to
obfuscate the truth, and delay and deny paying just claims. They are aided
and abetted by incompetent and underfunded wags at the CDC and NIH. and We
pay the price.
Things are changing however. The Whittemore/Peterson Institute has ruffled
the feathers of many in the medical establishment by teaming up with the
renowned Cleveland Clinic, and some top virologists and researchers in the
country. I do know know if XMRV is a cause, or the cause of all this misery,
or a simple bystander. But it has woken up the sleeping giant.
As i said back in 1989, at the end of my speech in SF, CA. "The late Sam
Rayburn, chair of the Senate Subcommittee investigating the crimes of
Watergate, -Any damn jackass, can kick a barn down, but it takes some damn
fine carpenters to build one!' I think it is high time that we stop allowing
these jackasses from kicking our individual barns down. We need to continue
to unite, at least one day per year, and work in unison with people like the
WPI, and the upcoming NEI Institute in New Jersey, spearheaded by my friend
Marly Silverman, founder of P.A.N.D.O.R.A., and all the doctors and
researchers who believe that we are SICK and not tired. These people know
that we ARE tired of being SICK! We need to ask these carpenters to help
rebuild our lives.
So, Please go to our website at
www.rescindinc.org and then scroll down to
the M.E. Petition. We have more than 8700 names on our petition. PLEASE
write a few sentences on the petition when you sign it. Ask your friends and
family to sign it as well. We need to pass the 10,000 signatures mark. Then
we can ask some healthier people to take the petition to Congress, to the
CFSCC, to the medical establishments of the world. Then Please download
Susan Wenger's excellent and prescient song about M.E. and please donate
some funds via paypal, so we can keep going for another 18 years!
Thank YOU ALL for your help over the years. This day was and is completely
patient driven.
So keep up the great work!
but remember to take care of Numero Uno!
Remember that the great philosopher Edwin Schopenhauer once said, " All
truth goes through three stages: first it is ridiculed: then it is violently
opposed: finally it is accepted as self evident.
Ciao for now.
Sincerely,
Tom Hennessy, jr.
Founder
RESCIND, Inc.
Creator of may 12th International Awareness Day for CIND.
RESCINDINC@gmail.com

May be reposted
My written testimony to the CFSAC is on my blogsite:
http://slightlyalive.blogspot.com
Here is the transcipt of my verbal testimony:
Thank you for allowing me the opportunity to present testimony. When it comes
to renewing the charter, we have to address one basic issue:
Accountability.
When is the U.S. government going to accept that we have a massive public health
catastrophe on our hands? Twenty-five years after this disease was first
brought to the attention of CDC, there are at least one million American adults
who suffer from it – but only 15% have the foggiest notion what is wrong with
them, while fewer than 1% have a doctor who has the foggiest notion what to do
about it. You can never fully recover from this disease, and it can kill
patients from myocarditis and rare cancers.
The CFSCC was created under Clinton to try to bring together the agencies and
come up with a coordinated approach; the CFSAC was restructured under Bush to
advise the Secretary of HHS in addressing the problem. The mission has not made
one bit of difference in practice, however, because the health agencies have
paid no attention whatsoever to what has been happening in these meetings.
The result is a stunning disconnect between what we supposedly know from this
committee, and what the CDC and NIH have allowed the public (including medical
professionals) to know.
A central goal of this committee should be to mediate these information
asymmetries. But in my experience, the agencies have been considerably less
than cooperative in this endeavor. I have seen patients and highly-respected
researchers work very hard on this committee. Virtually everything I know about
this disease has been presented to the committee – by now, all published in
peer-reviewed journals.
Yet both the NIH and CDC continue to operate as if this committee is at best a
nuisance, at worst non-existent. Long before the discovery of the retrovirus
XMRV, there was considerable evidence that this is a disease that is contagious
at some stage of its course. But the federal agencies have allowed the disease
to spread unabated for 25 years; the agencies have allowed people to sicken and
die untreated for 25 years.
That ALL has to COME to an END.
But how? By giving this committee the tool it needs: accountability.
These are my recommendations for the charter:
First, because of the severity of this crisis, there must be at least four
meetings a year until we get it under some level of control.
Second, those who give public testimony must be allowed at least five minutes to
speak.
Third, the meetings should continue to be made public while the records of
previous meetings should be made available.
Fourth, patients should be permitted time to ask questions after each ex officio
presentation.
Fifth, the problems of children and adolescents MUST BE ADDRESSED.
Sixth, we need a response from the Secretary of Health and Human Services to
regular reports which should be sent from the committee.
Finally, since no one in the executive branch has been able to get the health
agencies to take this disease seriously, I strongly recommend that the committee
also report to Senator Tom Harkin and the Senate Committee for Health,
Education, Labor and Pensions.
If the agencies continue to be unresponsive to the needs of their constituents,
then there will have to be a congressional investigation into the reasons.
Let’s all hope CDC and NIH decide to take their responsibilities seriously
before it comes to that point.
Mary M. Schweitzer, Ph.D.
Newark, DE and Incline Village, NV

New Zealand's blood banks plan to reject donors with a
record of chronic fatigue syndrome (CFS).
By Kent Atkinson of NZPA
Wellington, April 21 NZPA -
New Zealand's blood banks plan to reject donors with a
record of chronic fatigue syndrome (CFS).
The move follows research overseas which has raised
concerns about the potential for a recently identified
virus XMRV to spread through blood transfusions.
XMRV is a retrovirus, a kind of virus that inserts
its genetic map into the cells it infects -- something
that can have a variety of effects, including killing
the cell or turning it cancerous by affecting its
genetic makeup.
It was first detected in prostate cancers in 2006 and
has been found in 27 percent of such tumours, especially
aggressive tumours.
There is now conflicting evidence surrounding a link
to CFS, which is also known as ME in New Zealand where
there are reported to be 20,000 sufferers.
Canadian authorities have already imposed a lifetime
ban on former CFS patients donating blood.
They took the precautionary step earlier this month,
based on US research that showed the retrovirus may be
transmissible through infected blood.
Across the Tasman, Australia's Red Cross Blood
Service is also reviewing its donation guidelines.
The national medical director for New Zealand blood
banks, Peter Flanagan, told NZPA the NZ Blood Service (NZBS)
would be adopting a similar approach to that being
developed by the Canadian blood services.
The NZBS reviewed the issue at a meeting held earlier
this month and decided the present exclusion of blood
from people still suffering CFS or patients who had been
diagnosed in the past two years "should be extended to
also exclude donors who report ever having been
diagnosed with chronic fatigue syndrome," he said.
The decision was made despite a lack of good
scientific data on the issue, he said.
Of the 97 CFS patients excluded from donation in New
Zealand over the past 11 years, 12 have recovered and
subsequently donated blood at least once.
New Zealand health officials have known of the
potential linkage since at least October last year.
A US study of blood samples taken from 101 people
with CFS found 95 per cent also showed evidence of XMRV
infection.
CFS was first identified in New Zealand, when West
Otago doctor Peter Snow identified what became popularly
known as "Tapanui flu". Research he published with two
Otago University academics attracted international
attention despite scepticism by some elements of the
medical profession claiming the severe debilitation was
a psychological condition, or "yuppie flu".
After hundreds of Americans in Nevada also developed
fatigue and memory problems after suffering flu-like
symptoms, the US Centres for Disease Control labelled
the illness chronic fatigue syndrome, which led to many
patients being labelled as malingerers.
But the identification of the XMRV retrovirus in CFS
patients at a private US institute supported the late Dr
Snow's initial suspicions the disease was caused by a
virus. XMRV was also found in 2006 in some prostate
cancer patients.
Researchers are now trying to work out how the virus
is transmitted, whether it is the cause of CFS, or an
opportunistic infection which triggers other underlying
conditions and viruses and how people could be screened
for the virus in a simple lab test. If it is confirmed
as a cause of CFS, researchers will want to know if it
requires an environmental trigger, such as stress, to
affect the patient.
There is an anti-HIV drug, Isentress, which was
effective against XMRV, according to Utah University
researchers.
NZPA WGT kca kk nb

CFS 'link' prompts blood donation review'
DANNY ROSE
April 20, 2010 - 3:21PM
http://news.smh.com.au/breaking-news-national/cfs-link-prompts-blood-donation-review-20100420-sr25.html
AAP
Australia's Red Cross Blood Service is reviewing its donation
guidelines after Canada halted donations from people who have had
chronic fatigue syndrome (CFS).
Canadian authorities took the precautionary step earlier this month,
based on US research that linked CFS to a recently identified virus
(XMRV) which would be transmissible via infected blood.
Australia's blood service is conducting its own risk analysis. It says
existing donor guidelines require people with CFS to defer giving
blood until they make a full recovery.
"We are aware of recent developments in Canada," the Australian Red
Cross Blood Service said in a statement on Tuesday.
"We are undertaking our own risk analysis to assess what action, if
any, should be taken."
The blood service said it takes more than 500,000 blood donations each
year but only 70 donors with CFS had been deferred in the past two
years.
It was standard practice to defer all potential donors who were unwell
and in the case of people with CFS they needed written advice from
their GP before they could be accepted as a donor.
"The blood service currently defers donors who suffer from chronic
fatigue syndrome (and) before we can accept their blood again, they
need to bring us a letter from their treating physician advising us
that they are completely recovered," the statement said.
The Canadian ban on CFS sufferers donating blood is for their lifetime
out of concern any viral cause of their CFS could be spread.
XMRV (Xenotropic murine leukaemia virus-related virus) was first
detected in prostate tumours in 2006 and there is now conflicting
evidence surrounding a link to CFS.
Late last year, a US study of blood samples taken from 101 people with
CFS found 95 per cent also showed evidence of XMRV infection but
following studies have not produced the same results.
© 2010 AAP

'Virus leads Canadian blood service to ban certain donors'
April 6, 2010
Joseph Hall
HEALTH REPORTER
http://www.healthzone.ca/health/newsfeatures/article/791225--virus-causes-canadian-blood-service-to-ban-chronic-fatigue-donors
An AIDS-like virus that has been linked to chronic fatigue syndrome is
causing Canadian blood officials to ban anyone who has suffered from
the ailment from making donations.
While stressing that researchers have found no definitive links
between the virus, known as XMRV, and the chronic fatigue, Canadian
Blood Services says they will err on the side of caution and implement
the new donation restrictions.
Canada is the first country in the world to make the move, which is
being rolled out in donation centres nationwide over the coming weeks,
says Dana Devine, head of medical and scientific research with the
blood services agency.
“We’ve basically said ‘okay, let’s assume that this might be a problem
and let’s not wait until all these studies have sorted out the
answer,’ ” Devine says.
“Because we’re uncertain of the state of the science still, we’re
going to wait until this sorts out and defer anyone who’s been
diagnosed,” she says.
The move was given Health Canada approval last month and will be fully
in place in the coming two weeks.
U.S. media outlets reported this week that public health authorities
there were investigating the possibility that the retrovirus posed a
threat to that nation’s blood supply.
Because it closely resembles the AIDS virus, many believe XMRV can be
similarly transmitted through the exchange of bodily fluids or blood
transfusions.
And a study published last October in the prestigious journal Science
suggested that XMRV was strongly associated with chronic fatigue.
In the paper, researchers found that many of the 101 study subjects
who suffered from the condition also had been infected with the
retrovirus. Meanwhile, virtually none of the study’s healthy subjects
showed any trace of it in their bloodstream.
The chance the virus was there by accident in chronic fatigue
sufferers was “infinitesimally small,” lead study author Judy Mikovits
told the Star at the time.
“(The virus) undoubtedly causes some of the symptoms that are
associated with it (chronic fatigue),” said Mikovits, research
director of Nevada’s Whittemore Peterson Institute for Neuro-immune
Diseases.
Mikovits said the virus had almost certainly entered the U.S. blood
supply system, but did not know whether it would be susceptible to the
same heat treatments that successfully kill off the AIDS virus in
blood products.
Three subsequent studies, however, have cast strong doubt on Mikovits’
findings. Those papers, all released this year, showed little or no
link between the virus and chronic fatigue, also known as myalgic
encephalitis.
Last September, researchers from the University of Utah also found the
virus in prostate cancer cells. While XMRV was shown to be present,
researchers found no evidence it contributed to the disease’s onset.
Cancer patients are already prohibited from donating blood in Canada,
Devine says.
She says her service is part of an international effort to create an
effective screening tool that could look for XMRV in all donated
blood, should a definitive link to chronic fatigue be found. Because
it resembles HIV, she says, the same heating process that can rid
blood products like clotting agents of the AIDS virus should also work
to kill XMRV.
An estimated 340,000 Canadians are diagnosed with chronic fatigue. But
Devine says most would be too ill to give blood already and there is
little chance the current supply has been contaminated.

This year, 2010, marks
the 18th year for an International May 12th Awareness Day. The idea
originated with Tom Hennessy, the founder of RESCIND, Inc.
(Repeal Existing Stereotypes about Chronic Immunological and
Neurological Diseases). Mr. Hennessy is based in the U.S. but
understood that it needed to be an International event. He designated
May 12 as the International Awareness Day for the spectrum of illnesses
he called Chronic Immunological and Neurological Diseases (CIND).
“If a cause and
cure are to be found for ME/CFS, FM, MCS and related illnesses in the
near future, government and medicine must be made fully aware of their
scope and impact. Despite the efforts of a number of dedicated groups
and individuals, there are still vast pockets of ignorance and
misunderstanding. To this day, many patients run directly into a medical
establishment that, in general, knows very little about these serious
threats to human health. It is therefore crucial that all those affected
by the illnesses make their voices heard, especially on May 12th of each
year.”
May 12 was chosen as
it coincided with the birth date of Florence Nightingale, the
English army nurse who inspired the founding of the International Red
Cross. Nightingale became chronically ill in her mid-thirties with a
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)-like
illness. She was often bedridden for the last 50 years of her life.
Despite suffering from a debilitating illness, she managed to found the
world’s first School of Nursing.
Mr. Hennessy included
ME/CFS (also known as Chronic Fatigue and Immune Dysfunction Syndrome --
CFIDS), Fibromyalgia, Multiple Chemical Sensitivity and Gulf War
Syndrome under the CIND umbrella. These illnesses, characterized by
cognitive problems, chronic muscle and joint pain, extremely poor
stamina, and numerous other symptoms, afflict people around the world in
alarming numbers.
From the beginning in
1993, various ME/CFS organizations were behind the idea. Early support
came from a UK group called BRAME (Blue Ribbon Awareness for the
awareness of Myalgic Encephalomyelitis). They highlighted the May 12th
International Awareness Day at a World Medical Conference on ME/CFS in
1995. This was instrumental in the campaign being adopted
internationally for ME/CFS.
Efforts by
Fibromyalgia organizations took a little longer and efforts by MCS
groups have been limited. National FM efforts in the United States
started in 1997 with the National Fibromyalgia Association (NFA).
Multiple Chemical Sensitivity and Environmental Sensitivity groups have,
for the most part, not taken up the day, although there have been some
in the US who have used the month of May to raise awareness for Multiple
Chemical Sensitivity and Toxic Injury Awareness.
The National ME/FM
Action Network was founded in 1993 by Lydia Neilson and
became a Canadian registered charitable organization on June 16, 1993.
Through the efforts of this newly founded organization, May 12th has
been Awareness Day in Canada since 1994. For the first year, it was
only for ME/CFS but from 1995 and onward it has been for both ME/CFS and
for FM. On May 12, 1996, Parliament declared a National Awareness Day
for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and
Fibromyalgia. In 2006, the Senate proclaimed May 12 to be a National
Awareness Day for Fibromyalgia and ME/CFS. In Canada, May 12 is
included in Health Canada’s Calendar of Health Promotion Days as
“Fibromyalgia and Chronic Fatigue Syndrome National Awareness Day”.
Many provinces and
cities across Canada have proclaimed May 12 ME/CFS and Fibromyalgia
Awareness Days and many individual support groups have organized May 12
Awareness activities. Please see
http://www.mefmaction.net for support group information.
Some
organizations have an International ME/CFS Awareness Day (May 12),
others have a week (this year, May 9-15), still others, such as the
newly formed European ME Alliance which includes 9 European countries,
use the whole month of May. Awareness activities also occur in
Australia and New Zealand.
Purpose of Day and
Need for Action
ME/CFS & Fibromyalgia
Awareness Day activities are designed to increase public awareness of
ME/CFS and Fibromyalgia and chronic pain illnesses, as well as to assist
patients, patient support groups and organizations in educating the
general public, healthcare and legal professionals, government
officials, and legislative bodies.
Spreading awareness of
ME/CFS, Fibromyalgia and MCS and related conditions is important. You
only need to have a look at the Statistics published in the Special
Edition of our Spring-Summer 2009 Quest newsletter. This data
was compiled by Margaret Parlor, President of the National ME/FM
Action Network and former statistician with the Federal government for
25 years. It highlights the profile and impact of 23 chronic illnesses
and indicates high levels of impairment, socio-economic disadvantage,
and unmet health delivery needs for ME/CFS, FMS and MCS. To view these
statistics, see our website at
http://www.mefmaction.net/Portals/0/docs//Quest%2080.pdf
Tom Hennessy
In 2008, Cort Johnson
of Phoenix Rising (about mecfs.org), did
an interview with Tom Hennessy Jr. about his role in the founding of May
12 and RESCIND, Inc. As Cort notes, Tom was a former advertising
executive and is a very articulate advocate. He developed RESCIND (http://www.rescindinc.org/)
as a virtual lobbying group. Unfortunately Tom has been disabled for
many years with a horrendous case of ME/CFS and, to add insult to
injury, he was critically injured in a car accident in Florida in 2009
and is still recovering in a nursing home.
Social Media Groups
.
The development of
social media provides new opportunities to share information about these
illnesses and new groups have been formed to take advantage of these
opportunities. Here are some social media groups:
-
WAMCARE (Worldwide
Association for ME/CFS Awareness and Research
http://www.wamcare.org/index.html) was formed in 2009 and
they use social media to spread awareness for ME/CFS. They are
active on Facebook, Twitter and Live Journal
-
The Blue Ribbon
Campaign established by Andrea Martell (from Ottawa)
http://www.blueribboncampaignforme.org/What_You_Can_Do.html
was also formed in 2009 and is a campaign to raise awareness for
ME/CFS. One of their activities this year is a Facebook event to
display a blue ribbon as your avatar on May 12th 2010
http://www.facebook.com/event.php?eid=83125971055
-
An innovative
Facebook group focused on May 12th is working to improve the sharing
of May 12th ideas -- May 12th is International Awareness day for
ME/CFS and FM. Share your plans for May 12th and get involved to
help spread awareness on May 12th.
http://www.facebook.com/pages/May-12th-International-MECFS-FM-Awareness-Day/220534562160
·
http://meaware.wordpress.com/2010/02/15/blogging-for-mecfs-awareness-2010/
-- is asking participants to blog for ME/CFS awareness and is posting a
list and links to their blogs on this site.
Ribbons
Ribbons are used by
many groups as symbols of support or awareness. The ribbon colour used
for ME/CFS is blue, for Fibromyalgia it is purple and for MCS it is
green. In all cases, the ribbon color is not unique to the cause but
is used for other causes as well.
Green ribbons have
been adopted by those with Multiple Chemical Sensitivity and those with
Environmental sensitivity. As well as for other causes, this color
ribbon is also used for Environmental protection and for Lyme disease
awareness.
One MCS campaign,
originating in Hawaii, in February 2010 with website aptly called the
canary report, is using yellow to represent the canary.
Ed. note: We
gratefully acknowledge the background research and input by Maureen
MacQuarrie and Rachel Groves of RachelCreative

Prime Time Live story on Chronic Fatigue Syndrome circa 1996
The video is a VHS copy of a copy and well viewed. Please excuse the quality.
Video for
broadband internet services
Video for
dial up internet services


Myalgic
Encephalomyelitis: The shocking disease
Just explaining the basic facts of M.E.falls
far short of really getting
across what a hell on earth M.E. really is. In thinking about M.E. and all
of the terrible things that are happening so unfairly to so many wonderful
innocent people year after year, and how extremely severe a disease it can
be physically, many of us keep coming back to one word. Shocking. Above all
else, M.E. is a shocking disease. Jodi Bassett explains in this paper why
M.E. is THE shocking disease.

"Who was dragged down by the stone..."
As posted to Co-Cure By K. Kimberly McCleary
President & CEO
The CFIDS Association of America
The U.S. Centers for Disease
Control and Prevention (CDC) has announced
that Dr. William C. Reeves, head of the agency's CFS Research Program,
will be taking a new position within the agency effective Feb. 14, 2010
and that he will no longer lead the agency's CFS research. Dr.
Elizabeth Unger will serve as acting chief of the Chronic Viral
Diseases Branch, the unit within CDC that houses the CFS Research
Program. On Feb. 14, Dr. Reeves will begin an assignment as Senior
Advisor for Mental Health Surveillance in the Public Health
Surveillance Program Office within the CDC's Office of Surveillance,
Epidemiology, and Laboratory Services.
Some musings...
It seems that most, if
not the entire, CDC is being re-organized. So did they really hear us calling
for Reeve's head or is this just routine house cleaning by the new
administration?
Could the CDC's XMRV studies be producing positive results and
they are removing Reeves and his psychobabble and putting a scientist in place,
Elizabeth Unger, with expertise in cancer causing viruses (HPV) albeit she is,
for now, "acting chief?"
Could the CDC's XMRV studies be
producing negative results and Reeves move to Mental Health Surveillance in the
Public Health Surveillance Program Office be just another step into bringing
M.E. under the umbrella of Mental Health?
I would hope that
bringing in someone like Elizabeth Unger, even though she is named as a minor
author on some of the CDC's psychobabble publications, is a clue that a viral or
infectious cause is finally being accepted at the CDC.
If the CDC is finding XMRV in their studies and focusing on
that, what will happen to those who do not have the virus (if any)? Will the CDC
keep looking at infectious agents or will these patients follow Reeves into the
mental health quagmire?
Dr. Nancy Klimas as quoted from the
Q & A New York Times article “Is a Virus the
Cause of Fatigue Syndrome?” - posted online Oct 15, 2009
"But I hope you are not saying that C.F.S. patients are not as ill as H.I.V.
patients. My H.I.V. patients for the most part are hale and hearty thanks to
three decades of intense and excellent research and billions of dollars
invested. Many of my C.F.S. patients, on the other hand, are terribly ill
and unable to work or participate in the care of their families.
I split my clinical time between the two illnesses, and I can tell you if I
had to choose between the two illnesses (in 2009) I would rather have H.I.V."
Dr. Marc Loveless as quoted by Tom Hennessy from
A Brief History of the Name
Change Movement
http://www.rescindinc.org/history.htm
Dr. Shelekov looked puzzled and maybe a little skeptical.
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).
October 9, 2009: Detection
of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic
Fatigue Syndrome (Science)
Published Online October 8, 2009
Science DOI: 10.1126/science.1179052
Science Express Index
Reports
Submitted on July 14, 2009
Accepted on August 31, 2009
Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with
Chronic Fatigue Syndrome
Vincent C. Lombardi 1, Francis W. Ruscetti 2, Jaydip Das Gupta 3, Max A. Pfost
1, Kathryn S. Hagen 1, Daniel L. Peterson 1, Sandra K. Ruscetti 4, Rachel K.
Bagni 5, Cari Petrow-Sadowski 6, Bert Gold 2, Michael Dean 2, Robert H.
Silverman 3, Judy A. Mikovits 1*
1 Whittemore Peterson Institute, Reno, NV 89557, USA.
2 Laboratory of Experimental Immunology, National Cancer Institute-Frederick,
Frederick, MD 21701, USA.
3 Department of Cancer Biology, The Lerner Research Institute, The Cleveland
Clinic Foundation, Cleveland, OH 44106, USA.
4 Laboratory of Cancer Prevention, National Cancer Institute-Frederick,
Frederick, MD 21701, USA.
5 Advanced Technology Program, National Cancer Institute-Frederick, Frederick,
MD 21701, USA.
6 Basic Research Program, Scientific Applications International Corporation,
National Cancer Institute-Frederick, Frederick, MD 21701, USA.
* To whom correspondence should be addressed.
Judy A. Mikovits , E-mail: judym@wpinstitute.org
These authors contributed equally to this work.
Chronic fatigue syndrome (CFS) is a debilitating disease of unknown etiology
that is estimated to affect 17 million people worldwide. Studying peripheral
blood mononuclear cells (PBMCs) from CFS patients, we identified DNA from a
human gammaretrovirus, xenotropic murine leukemia virus-related virus (XMRV), in
68 of 101 patients (67%) compared to 8 of 218 (3.7%) healthy controls. Cell
culture experiments revealed that patient-derived XMRV is infectious and that
both cell-associated and cell-free transmission of the virus are possible.
Secondary viral infections were established in uninfected primary lymphocytes
and indicator cell lines following exposure to activated PBMCs, B cells, T
cells, or plasma derived from CFS patients. These findings raise the possibility
that XMRV may be a contributing factor in the pathogenesis of CFS.
October 9, 2009 New York Times
Virus Is Found in Many With Chronic Fatigue Syndrome
!
By DENISE GRADY
Many people with chronic fatigue syndrome are infected with a little
known virus that may cause or at least contribute to their illness, researchers
are reporting.
The syndrome, which causes prolonged and severe fatigue, body aches and other
symptoms, has long been a mystery ailment, and patients have sometimes been
suspected of malingering or having psychiatric problems rather than genuine
physical ones. Worldwide, 17 million people have the syndrome, including at
least one million Americans.
An article published online Thursday in the journal Science reports that 68 of
101 patients with the syndrome, or 67 percent, were infected with an infectious
virus, xenotropic murine leukemia virus-related virus, or XMRV. By contrast,
only 3.7 percent of 218 healthy people were infected. Continuing work after the
paper was published has found the virus in nearly 98 percent of about 300
patients with the syndrome, said Dr. Judy A. Mikovits, the lead author of the
paper.
XMRV is a retrovirus, a member of the same family of viruses as the AIDS virus.
These viruses carry their genetic information in RNA rather than DNA, and they
insert themselves into their hosts' genetic material and stay for life.
Dr. Mikovits and other scientists cautioned that they had not yet proved that
the virus causes the syndrome. In theory, people with the syndrome may have some
other, underlying health problem that makes them prone to being infected by the
virus, which could be just a bystander. More studies are needed to explain the
connection.
But Dr. Mikovits said she thought the virus would turn out to be the cause, not
just of chronic fatigue, but of other illnesses as well. Previous studies have
found it in cells taken from prostate cancers.
"I think this establishes what had always been considered a psychiatric disease
as an infectious disease," said Dr. Mikovits, who is research director at the
Whittemore Peterson Institute in Reno, a nonprofit center created by the parents
of a woman who has a severe case of the syndrome. Her co-authors include
scientists from the National Cancer Institute and the Cleveland Clinic.
Dr. Mikovits said she and her colleagues were drawing up plans to test
antiretroviral drugs - some of the same ones used to treat HIV infection - to
see whether they could help patients with chronic fatigue. If the drugs work,
that will help prove that the virus is causing the illness. She said patients
and doctors should wait for the studies to be finished before trying the drugs.
Dr. William Schaffner, an infectious disease expert at Vanderbilt University,
said the discovery was exciting and made sense.
"My first reaction is, 'At last,' " Dr. Schaffner said. "In interacting with
patients with chronic fatigue syndrome, you get the distinct impression that
there's got to be something there."
He said the illness is intensely frustrating to doctors because it is not
understood, there is no effective treatment and many patients are sick for a
long time.
He added, "This is going to create an avalanche of subsequent studies."
NIH/National Cancer
Institute Press Release
Consortium of Researchers Discover Retroviral Link to Chronic Fatigue Syndrome
Hey Bill, your fly is open...
Published online 8 October 2009 | Nature |
doi:10.1038/news.2009.983
Virus linked to chronic fatigue syndrome
Prostate cancer pathogen may be behind the disease once dubbed 'yuppie flu'.
Lizzie Buchen
A study on chronic fatigue syndrome (CFS) has linked the mysterious and
controversial disease to a recently discovered retrovirus. Just last month
researchers found the same virus to be associated with aggressive prostate
tumours.
Chronic fatigue syndrome is seen as a serious but poorly defined disease.
PUNCHSTOCKCFS is marked by debilitating exhaustion and often an array of other
symptoms, including memory and concentration problems and painful muscles and
joints. The underlying cause of the disease is unknown; it is diagnosed only
when other physical and psychiatric diseases have been excluded. Though the
disease's nebulous nature originally drew scepticism from both doctors and the
general public, most of the medical community now perceives it as a serious — if
poorly defined — disease.
Now Judy Mikovits of the Whittemore Peterson Institute for Neuro-Immune Disease
in Reno, Nevada, and her colleagues think they have discovered a potential
pathogenic link to CFS. In patients with the disease from different parts of the
United States, 67% were infected with a retrovirus known as XMRV. Less than 4%
of controls carried the virus.
"I can't wait to be able to tell my patients," says Mikovits, who is also the
vice president of drug development for Genyous Biomed in Henderson, Nevada.
"It's going to knock their socks off. They've had such a stigma. People have
just assumed they were just complainers who didn't handle stress well."
Prostate puzzle
CFS researchers have long had their eyes on retroviruses. A number of the
symptoms, including fatigue and cognitive dysfunction, can occur when the immune
system is dealing with a viral infection, and the disease is often preceded by a
flu-like illness. Although a number of retroviruses have been hypothesized to
play a role in CFS, none has ever been confirmed.
About three years ago Robert Silverman, a biologist at the Cleveland Clinic
Foundation in Ohio and a coauthor of the new study, discovered a previously
unknown retrovirus, XMRV, while searching for a pathogen that might contribute
to prostate cancer. The retrovirus was very similar to MLV, a group of viruses
that can cause cancer and neurological and immunological diseases in mice.
Silverman found XMRV in a subset of prostate tumours, and more recent research
found a stronger correlation between XMRV and aggressive prostate tumours1,2.
Mikovits asked Silverman to analyze the blood samples of 101 CFS patients and
218 healthy controls. The authors detected XMRV DNA in the immune cells of 67%
of the CFS patients but in only 3.7% of healthy controls. The authors also
showed that the virus was able to spread from infected immune cells to cultured
prostate cancer cells and that the virus's DNA sequence was more than 99%
similar to the sequence of the virus associated with prostate cancer. The
findings were published in Science3.
"It's scary," says Mikovits. "But it's cool. Hopefully this will finally make
people change their attitudes to this disease."
Mikovits believes the association may be even stronger than the present work
indicates. DNA sequencing only picks up active infections, she says, so she
wants to study CFS exposure to the virus more broadly. In an unpublished
investigation, she and her colleagues analyzed blood cells in about 330 CFS
patients and found that more than 95% expressed antibodies to XMRV, whereas
about 4% of healthy controls did.
Controversial connection
Although Mikovits acknowledges that it's premature to suggest a causal link
between XMRV and CFS, she thinks it makes sense. Chronic XMRV infection in
immune cells could cause them to churn out inflammatory cytokines, which are
observed in some CFS patients, she says. Mikovits also points out that the MLV
coat protein can disrupt red blood cells in mice, leading to low blood oxygen
levels.
William Reeves, principal investigator for the Centers for Disease Control
and Prevention (CDC)'s CFS public health research programme, says the findings
are "unexpected and surprising" and that it is "almost unheard of to find an
association of this magnitude between an infectious agent and a well-defined
chronic disease, much less an illness like CFS".
But Reeves is cautious. "Until the work is independently verified, the report
represents a single pilot study," he says. According to Reeves, the CDC is
already trying to replicate these findings. He also notes that CFS is a
heterogeneous disease and likely arises from a combination of many factors.
XMRV presents its own puzzle. John Coffin, a virologist at Tufts University in
Boston who has studied MLV, points out that the virus's prevalence in healthy
controls "is, in some ways, an equally striking result".
"It's highly preliminary, but if it's in fact representative, then there are 10
million Americans with this infection, which is very similar to MLV and is now
linked to two important diseases," says Coffin. "There's a lot we don't know,
including whether XMRV causes disease, but that's always the case when the first
paper, like this one, comes out."
References
1.Schlaberg, R. et al. Proc. Natl Acad. Sci. USA 106, 16351–16356 (2009). |
Article | PubMed | ChemPort |
2.Urisman, A. et al. PLoS Pathogens 2, e25 (2006).
3.Lombardi, V. C. et al. Science doi:10.1126/science.117052 (2009).