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Please sign the petition!
The National CFIDS Foundation and RESCIND are sponsoring a petition
to recognize Myalgic Encephalomyelitis as a serious and debilitating
disease.
Here is an excerpt from the petition which is addressed to the United States
Department of Health and Human Services, the National Institutes of Health, and
the Centers for Disease Control :
We, the undersigned, respectfully demand that Myalgic
Encephalomyelitis (ME), an internationally recognized neurological
disease, be also formally recognized as a distinct clinical entity in
the United States by the National Institutes of Health and the Centers
for Disease Control. It is time to make the case definition/diagnostic
criteria explicit in the name.
Currently, most patients are diagnosed with Chronic Fatigue Syndrome, a
poorly defined, misunderstood, controversial syndrome which remains
under-funded and under-researched. The name Chronic Fatigue Syndrome
itself has trivialized the illness and further subjected these patients
to incredulity and ridicule. The CFS rubric has not only neglected and
failed to help those with ME, it has harmed them. ME patients will not
improve with cognitive behavioral therapy (CBT) or graded exercise (in
fact, exercise will make them worse) - yet these are considered
treatments for CFS. Simply "renaming" CFS will not solve this problem.
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You can see the full petition (and sign it if you wish) at:
http://www.petitiononline.com/MEitis/petition.html
It is helpful to give information as to where you are from when signing the
petition. Also, please remind everyone that family, friends, co-workers etc. can
sign also -- it does not have to be limited to patients. We are particularly
gratified by the number of physicians who have signed the petition.
The response thus far has been most impressive and the
petition is ranked as one of the top 25 at that site. Many comments express and
capture the pain, frustration and despair of living with this illness that is so
misunderstood (due in large part to the inappropriate, demeaning name) along
with long overdo demands for recognition and help. They clearly reflect
positively on the knowledge, dedication and resolve of patient community as a
whole.
Hillary Johnson, author of Osler's Web, was one of the first to sign.
After all the years of research and dedication that went into the writing of her
book, her endorsement is significant and reassuring. She wrote:
"CFS was a name selected in 1988 by a small group of politically motivated
and/or poorly informed scientists and doctors who were vastly more concerned
about costs to insurance companies and the SSA [Social Security Administration] than about public
health. Their deliberate intention--based on the correspondence they exchanged
over a period of months--was to obfuscate the nature of the disease by placing
it in the realm of the psychiatric rather than the organic. In doing so, they
also deliberately ignored a substantial body of published research on ME. The
harm they have caused is surely one of the
greatest tragedies in the history of medicine. The government scientists
involved in this fraud should have been prosecuted years ago. Restore the name
in the U.S."
Permission is hereby granted to anyone to include the petition in newsletters or
to have it available at conferences.
For people who do NOT have access to the Internet (and preferably
only those) they may send in their name to be added to The National
CFIDS Foundation, 103 Aletha Rd., Needham, MA 02392.
April 2001 (still active Autumn 2004)
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