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.
You can see the full petition (and sign it if you wish) at:
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.
