Mary writes:
I have created a blog to discuss adopting the Canadian consensus diagnostic and treatment criteria in the United States, along with the name used in that document, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (which can be found in G93.3 in the World Health Organization's codes of diseases, ICD-10).
The blog is here:
http://canadaconsensus.ning.com/
(Please forgive the stupid ads; I haven't figured out how to get rid of them yet!)
Eventually (when I figure out how to do it) there will be a petition and a vote. But the decision about the name and its meaning will not have been made in advance by a committee.
I only ask that those who participate be as polite as if they were all sitting in the same room. If not, I will not hesitate to delete a rude post - although I will suggest a more polite rephrasing to the poster.
ALL subjects relating to the name are open, including the combination names that some have preferred - neuro-endocrine-immune disorder, for example.
I was hoping not to have to restart this debate, but there are issues that need to be discussed before the Fair Name petition http://www.afairname.org/index.cfm proceeds further. I had myself signed the petition assuming it referred to the Canadian consensus name, which is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. I would not have signed it had I thought "M.E." stood for whatever you wanted it to.
But this is a choice, and not just mine to make. So - go get a name, a password (write the password down in your home phone book!) and ... post away. Have fun, but play nice.
Mary Schweitzer, Ph.D.
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THIS EMAIL MAY BE FREELY CIRCULATED, UNEDITED. -- Mary Schweitzer
Announcing a new online petition for adopting the international (Canadian) Consensus Document for M.E./CFS in the United States. Go here:
http://www.ipetitions.com/petition/consensusdoc/index.html
Information that is not required is still helpful in being able to use the petition with Congress, and only your name shows up on the list of petition signatures.
Everyone is welcome to download the petition and collect real signatures, which are actually more influential in Congress. If you do so, try to at least get the state down so that we have information to present to specific Senators.
Discussion about this and the two other petitions on the name of the disease can be found here:
http://canadaconsensus.ning.com/
Thank you -- Mary Schweitzer
------------------------------ Contents of Petition --------------------------------
http://www.ipetitions.com/petition/consensusdoc/index.html
We, the undersigned, respectfully request that the United States health agencies adopt the international “Consensus Document” for the diagnosis and treatment of the disease therein named Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, or “ME/CFS”.
In the late 1980s, a large number of cluster outbreaks of a mysterious disease appeared throughout the United States. Many patients seemed to have a chronic form of Epstein-Barr Virus, or mononucleosis, but others tested negative for the condition. Experts from both inside and outside the United States suggested that these outbreaks were the same disease that was first named “atypical polio” in Los Angeles in 1934, then called “epidemic neuromyesthenia” in the United States (1950s-1980), and “myalgic encephalomyelitis (M.E.)” in Canada, the UK, and other nations (1950s-present).
The U.S. CDC insisted that these outbreaks represented a new disease entity entirely, and in 1988 named the disease “chronic fatigue syndrome (CFS).” Today there are no fewer than seven different definitions for “CFS” worldwide, some of which directly conflict with each other. All focus on the single symptom “fatigue,” which is a characteristic of any serious illness.
The international Consensus Document for diagnosing and treating ME/CFS was written in response to the placement of both M.E. and CFS in the neurological category, G93.3, by the World Health Organization in ICD-10. The committee who wrote the document came from the United States, Canada, and overseas: Bruce M. Carruthers, Anil Kumar Jain, Kenny L. De Meirleir, Daniel L. Peterson, Nancy G. Klimas, A. Martin Lerner, Alison C. Bested, Pierre Flor-Henry, Pradip Joshi, AC Peter Powles, Jeffrey A. Sherkey, and Marjorie I. van de Sande. The document was published by the Journal of Chronic Fatigue Syndrome in 2003.
A summary written by Bruce Carruthers and Marjorie van de Sande is available through the National ME/FMS Action Network of Canada at the following website:
http://www.mefmaction.net/Portals/0/docs//ME-CFS%20Overview.04-07.pdf
We believe that adoption of this international Consensus Document by the United States would aid greatly in the efforts to find and treat those who suffer from this devastating and confounding disorder. The Consensus Document not only offers objective measures and biomarkers, but also suggests treatments. The Consensus Document concludes with a bibliography of peer-reviewed journal articles supporting the information presented therein.
A team of researchers at DePaul University found the document to be superior to the CDC’s research criteria in identifying patients with serious physical symptoms and functional impairments, as opposed to those with primary psychopathologies [Jason et al, Journal of CFS 2004]. The patients who most need to be reached would be better served by adopting the Consensus Document. A committee of the IACFS/ME (dedicated to research into CFS and M.E.) has already adopted a version of the Consensus Document for pediatric diagnosis and care [Journal of CFS, 2006].
In the 20 years since the name CFS was created, very little has changed for patients diagnosed with this disease in the U.S. Indeed, the CDC itself admits that no more than 15 percent of patients who have the disease even have a diagnosis.
According to CDC studies, the nation loses at least $20 billion per year in national product, and $7 billion in lost income tax revenues per year, because so many patients with this disease are unable to hold a job. The individual suffering of patients and families forced into poverty by this illness can only be imagined by those who have not experienced it.
The CDC’s informational website for the disease states: “There are no tests and there are no treatments.” What can patients, or their physicians, do?
We, the undersigned, believe it is time for the United States to directly address the needs of one million Americans suffering from a poorly understood, debilitating illness. The best way to begin would be by adopting the existing international Consensus Document for diagnosing and treating ME/CFS.
UPDATE 3/18
I am mortified to have to tell everyone that the petition website where the petition to adopt the Canadian (international) consensus document in the United 'States has been housed is - well, in my opinion, wholly unethical and I have had to take the petition down.
After about two weeks, and without warning me, the company running the website inserted a request for funding for THEM! I learned that people would sign the petition, and as soon as they did that, the website would shift to one with different amounts of donations listed - and one person who vetted it for me said that they already had the amount checked and it didn't seem to be uncheckable.
Every type of dispicable practice on internet seems legal. They probably buried this in fine print somewhere.
I want to assure ANYONE who signed that petition and then got asked to donate money that:
**** The money did not go to me or to M.E. or CFS advocacy. It went to the website company. ****
Perhaps we can circulate a petition the old-fashioned way, getting signatures wherever people gather. This was a most disheartening experience.
If you want to discuss the issue (including the other petitions), my other website is still working fine at ning.com -
http://canadaconsensus.ning.com/
ANYONE who actually gave money after signing the petition should contact me ASAP.
Mary Schweitzer
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