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All negative reactions to the Fair Name Campaign
about the name Myalgic Encephalopathy were
removed from the site.
And patients who thought that the (temporary) name
*ME/CFS* (Myalgic Encephalomyelitis/Chronic Fatigue
Syndrome) was anyhow better than *CFS*, but
(because of brainfog) later on concluded that, the
name was changed into Myalgic Encephalopathy,
could not retracted their vote.
The Founder became rich of ME, due to differences in
scientific studies, caused by the terrible, political
CDC criteria, which will never provide any medication,
apart from CBT and GET.
The (bio) psychosocial school has made the winning
goal - because they are the *scientists*, who didn't
want the name Myalgic Encephalomyelitis.
Why didn't the founder spent all this money to fight
for a solid definition, based on the ME outbreaks in
the USA and other parts of the world?
Together with the name change we have lost our
rights of the WHO classification, because their isn't
an illness in the ICD called Myalgic Encephalopathy!
and concernig the examples is written:
"..As a result, we're already starting to see
*ME/CFS* appear more often.
Some examples:
In January 2007 the IACFS voted to change its name
to IACFS/ME.
----->>> so NOT *ME/CFS* !
The big conference being held in London on May 23 is
called the International ME/CFS Conference.
----->>> The organizers of this conference write
in their Journal:
"....Whilst continuing to use the term ME or
ME/CFS in our material we will be referring to the
neurological illness *myalgic encephalomyelitis* and
hope that readers will not be too confused by the
additional use of CFS or CFS/ME by contributors
and presenters...."
A businessman with conflict of interest is not the
obvious person to rename a severe multi-systemic
disease; that's an issue for the WHO together with
biological scientists.
~jvr
``````
http://www.immunesupport.com/library/showarticle.cfm/ID/8864
Founder's Corner: Fair Name Campaign Update
Exciting New Direction
by Rich Carson
ImmuneSupport.com
05-19-2008
A number of you have asked about the status of the
Fair Name Campaign, so I thought this first
newsletter following Awareness Day would be a good
time to give you an update. First, and most
importantly, the patient community has jumped on
board. Your feedback has been positive and
encouraging.
Not surprisingly, the vast majority of patients favor
adopting a new, fair name, as 'Chronic Fatigue
Syndrome' is universally perceived as trivializing,
dismissive, and thoroughly inaccurate. And, while
there are a few people who have other preferences,
most of you strongly support adopting the acronym
ME/CFS.
Second, and equally as exciting, patient
organizations and several in the medical community
have also picked up the banner. As a result, we're
already starting to see ME/CFS appear more often.
Some examples:
In January 2007 the IACFS voted to change its name
to IACFS/ME.
The big conference being held in London on May 23 is
called the International ME/CFS Conference.
Researcher and clinician Dr. Charles Lapp has
announced that all of their forthcoming research
papers will use ME/CFS rather than Chronic Fatigue
Syndrome.
When we began the Fair Name Campaign, our
intention was to have a vote on whether or not to
accept the Name Change Advisory Board's
recommendation of ME/CFS. However, since that
time, the campaign has taken on a life of its own, as
the use of ME/CFS in both the medical and patient
communities is growing steadily. Therefore, we are
shifting our focus, from a vote to implementation of
the name that is increasingly being recognized and
accepted - ME/CFS - and moving forward with the
guidance of respected patient leaders.
A New Direction
Since the formation of the Name Change Advisory
Board was first announced in January 2007, I have
tried to make it clear that this effort has to be driven
by patients, patient organizations and the medical
community. Now several patient leaders have
stepped up, are taking charge, and are pushing the
campaign forward. Some of those leaders include:
Karen Lee Richards – co-founder of the NFA and
patient expert on ChronicPainConnection.com;
Cort Johnson – founder and editor of the Web site
Phoenix Rising, which serves the ME/CFS and FM
communities;
Marly Silverman – founder of P.A.N.D.O.R.A, an
organization supporting patients with
neuroendocrineimmune disorders; and
Dorothy Wall – author of Encounters with the
Invisible: Unseen Illness, Controversy and Chronic
Fatigue Syndrome.
Just a few of the exciting new things you can look
forward to include:
A completely redesigned Website (to be launched in
September) that will give you more in-depth
information about the Fair Name Campaign, answers
to your questions about the name change, and
information about what you can do to help. The site
will also be updated regularly, keeping you informed
on all the latest news about the progress of the
name-change effort.
An accelerated pace, with a more comprehensive
strategy for publicizing the importance of a fair name
for patients.
Celebrity endorsements featuring celebrities who are
diagnosed with ME/CFS or who have family members
suffering with ME/CFS.
The several hundred patients who have volunteered
to help with the campaign will be contacted over the
summer with suggestions of things you can do to
move the campaign forward.
Clearing Up the Confusion
The sole intent and purpose of the Fair Name
Campaign is to give patients a respectable name for
their illness. Studies have proven that patients
diagnosed with Chronic Fatigue Syndrome are not
taken as seriously as patients with the same
symptoms but a different name for their diagnosis.
The CFS name not only affects the quality of
treatment patients receive, but it also affects the
amount of money committed to research. It's hard to
convince those funding research to spend their
money on people they think are just tired all the
time. Patients deserve to be taken seriously, to have
a name for their illness that preserves their dignity,
and to receive appropriate medical care.
With this in mind, the committee of patient leaders
has spent several months researching and
considering each and every concern addressed to and
about the Fair Name Campaign. The biggest debate
regarding the name change seems to be whether the
ME should stand for Myalgic Encephalopathy or
Myalgic Encephalomyelitis.
To give you a little background, the Name Change
Advisory Board - which was composed of eight
leading ME/CFS researchers and clinicians - originally
recommended ME/CFS, with the ME standing for
Myalgic Encephalopathy. When a few patients
strongly vocalized their objections to using
encephalopathy, we attempted to compromise,
saying the ME could stand for either Myalgic
Encephalopathy or Myalgic Encephalomyelitis. In
retrospect, that was not a good solution.
There are good, valid arguments on both sides of
this issue. Each name has its pros and cons. But in
the end, it was felt that we should abide by the
recommendation of the Advisory Board – to use
Myalgic Encephalopathy as the ME in the acronym
ME/CFS. The board members felt strongly that
Myalgic Encephalomyelitis should not be used
because not every patient diagnosed with CFS had
evidence of brain or spinal cord inflammation, which
is a key component for a diagnosis of Myalgic
Encephalomyelitis. Dr. Nancy Klimas, president of
the IACFS/ME, stated that inflammation of the
central nervous system is identifiable in 80% of
patients, and therefore excludes 20% of patients
who also have classic CFS symptoms.
Myalgic Encephalopathy, on the other hand, is a
broader, more comprehensive term, and simply
means a disorder of the brain. This includes the
patients with inflammation, as well as the 20% of
patients in whom inflammation cannot be identified.
In a word, Myalgic Encephalopathy includes all
bonafide CFS patients, whereas Myalgic
Encephalomyelitis excludes 20% of these patients.
Which category do you think you would fall into?
We want to emphasize the fact that we are in no
way trying to minimize or change the name of
Myalgic Encephalomyelitis. If anything, we hope this
will demonstrate the severity of Myalgic
Encephalomyelitis and allow it to stand on its own. If
you have evidence of brain or spinal cord
inflammation and have been diagnosed with Myalgic
Encephalomyelitis, you still have Myalgic
Encephalomyelitis. We don't expect you to change
the name of your illness to ME/CFS.
There is one other concern some have expressed
about using Myalgic Encephalopathy that we would
like to clear up. They are afraid ME/CFS patients will
be lumped in with people who have mental disorders.
We talked with several medical experts and they all
assured us that Myalgic Encephalopathy refers to an
organic brain disorder and in no way includes mental
disorders. (For a more complete description of
encephalopathy, please see the footnoted definitions
below.)
Moving Forward
I'm excited about the new energy and enthusiasm
that has been injected into the Fair Name Campaign
and hope you will be, too. If you'd like to sign the
petition or volunteer to help, or submit a comment or
question, you can do so now on the Fair Name
Campaign Web site
( http://www.afairname.org/volunteer.cfm).
Don't forget to watch for the announcement of our
improved Campaign Website in September.
Whatever you do, don't allow yourself to be
dismissed as someone who has "chronic fatigue." We
can right this wrong for ourselves, for our families,
and for a medical community still in need of a fair,
accurate name for a disease that causes
immeasurable suffering.
Keep the faith,
Your supporter and advocate,
Rich Carson
``````
Encephalopathy defined:
Source: Medline Medical Dictionary:
en-ceph-a-lop-a-thy: plural -thies:
a disease of the brain; especially one involving
alterations of brain structure
Source: New Oxford American Dictionary
encephalopathy |en-sef-a-lop-a-thy|:
noun Medicine a disease in which the functioning of
the brain is affected by some agent or condition
(such as viral infection or toxins in the blood): pl.
-thies
Source: Nature (extremely respected science
publication; in business since 1869)
ENCEPHALOPATHY …condition of the brain that can
be caused by infectious disease, metabolic
abnormalities, brain tumors, toxic drug effects or
increased intercranial pressure.
Source: www.virtualtrials.com/dictionary
A disease of the brain; especially: one involving
alterations of brain structure.
~~~~~~~~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
Exciting new direction?
Gurli BagnallURSULA@xtra.co.nz
< http://www.immunesupport.com/library/showarticle.cfm/ID/8864>
I refer to the Fair Name Campaign Update - Exciting
New Direction, written by Rich Carson. I would like to
pass a couple of short comments.
When this Fair name campaign first raised its head,
the manner in which it did so, left me thinking,
They're trying to tell grandma how to suck eggs!
Here were a bunch of strangers telling people who
have endured ME for years - even decades - what to
do and how to do it. Today they are still pushing
that same barrow; a very similar barrow to the one
that Wessely and others (in the UK) has been
pushing since the 1980s. We know the moves; we
know the tactics. We could give Rich lessons if he
wants....
After thinking for awhile, I managed to get off my
bed and onto the motorized wheelchair without
which, I go nowhere - even in the house - and I
headed for my computer.
This update, reminded me of James Jones (if I
remember the name correctly) who is a colleague of
Rich and Cort. Readers might recall that Jones
entertained us with his version of the definitions of
sickness, illness and disease. He maintained that
people can be sick and ill at the same time, but not
diseased. On the other hand, they can be diseased
and ill, but not sick! Yet again they can
Mr. Jones was clearly excited about this topic and
went on at considerable length with many convoluted
explanations. The feeling I got was that he
desperately WANTED to say something, but really he
had nothing relevant to say! What a shame! How
very sad! If he had just given it some thought, he
would have realized that there are none so diseased
as those who suffer a terminal illness; a point I
raised at the time.
It was clear to me these people had an agenda
which has nothing to do with fairness for the
sufferers. In fact if they are speaking about an actual
disease, that disease is not ME. And what makes me
so sure of that? It was something Rich said. Quote:
First, and most importantly, the patient community
has jumped on board. Your feedback has been
positive and encouraging.
Say honey chil! Havent yo been readin letters on the
internet lately? Seems to me no one was jumpin
about anywhere! There sure as heck werent any GET
goin on in ma neck of the woods. Even ma
wheelchair wont do no wheelies no mo.
Seriously, folks, I am sure Rich et al. dont really
think we are a bunch of numbskulls to be
manipulated and treated with contempt. I feel sure
their hearts are in the right places and probably have
some disorder or other in mind. But its not ME and
before they go any further, they really need to get
the basics right; sort out their illnesses, sicknesses
and diseases and then start afresh towards wherever
they thought they were heading in the first place.
Who knows....Alice might give them a tour of the
rabbit hole!
Some time ago, erikmoldwarrior posted a quotation
which I think is relevant at this time. I have copied it
out below and thank Erik for drawing it to our
attention:
A nation can survive its fools, and even the
ambitious. But it cannot survive treason from within.
An enemy at the gate is less formidable, for he is
known and he carries his banner openly.
But the traitor moves among those within the gate
freely, his sly whispers rustling through all the
alleys, heard in the very halls of government itself.
For the traitor appears [as] not [a] traitor - he
speaks in the accents familiar to his victims; and he
wears their face and their garments, and he appeals
to the baseness that lies deep in the hears of all
men.
He rots the soul of a nation - he works secretly and
unknown in the night to undermine the pillars of a
city - he infects the body politic so that it can no
longer resist. A murderer is less to be feared.
Cicero, Roman philosopher and statesman, 42 BC
To put it another way: With friends like these, who
needs enemies? (Author unknown.)
Gurli Bagnall
21 May, 2008
