Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in U.S.
Should the U.S. adopt the Canadian (international) M.E./CFS diagnostic and treatment protocol? M.E. stands for Myalgic Encephalomyelitis, and those with an M.E. diagnosis need not fear it will change.
Wording of Petition to Adopt Consensus Document in U.S.
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/Patients/Overviews/tabid/122/Default.aspx
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.
For various options on signing the petition, go to: http://www.cfids-me.org/index.html#consensus.
To view the petition, go to:
http://www.cfids-me.org/petition.html.
To send an email to your Congressman and Senators about adopting the Consensus Document, go to:
http://www.cfids-me.org/petitionemail.html.
To discuss this petition, the other two petitions, and issues related to the name, definition, diagnosis and treatment of M.E. and CFS, click on
Forum.
-- Mary Schweitzer
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/Patients/Overviews/tabid/122/Default.aspx
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.
For various options on signing the petition, go to: http://www.cfids-me.org/index.html#consensus.
To view the petition, go to:
http://www.cfids-me.org/petition.html.
To send an email to your Congressman and Senators about adopting the Consensus Document, go to:
http://www.cfids-me.org/petitionemail.html.
To discuss this petition, the other two petitions, and issues related to the name, definition, diagnosis and treatment of M.E. and CFS, click on
Forum.
-- Mary Schweitzer
New Campaign to adopt the Canadian Consensus document for ME/CFS in the United States
The failure of the first i-petition has been a blessing in disguise, because now we have a better combination of options -
Information for how to send emails to your congressmen and senators; a long email petition to sign and and email address to send it to; and a short email petition to print out and have people sign them in person - then send them to me. I can get the petitions to Congress; when the time comes, maybe we can put together a group!
Congress pays more attention to email letters than the old-fashioned kind (for security reasons), but they have to be your OWN Congressmen. You can "sign" the petition by email and send the emails to me (and I will compile them. However, Congress pays more attention to the old-fashioned kind of petition - one with real signatures on it. If we can get real petitions circulating, that's even better.
Do whatever is easiest for you, and try to get others to join.
I've put up a number of websites to help in all this, and plan to add some more - but this is enough to get started! Go to:
http://www.cfids-me.org/index.html#consensus
and let's get something rolling!
Mary Schweitzer
Information for how to send emails to your congressmen and senators; a long email petition to sign and and email address to send it to; and a short email petition to print out and have people sign them in person - then send them to me. I can get the petitions to Congress; when the time comes, maybe we can put together a group!
Congress pays more attention to email letters than the old-fashioned kind (for security reasons), but they have to be your OWN Congressmen. You can "sign" the petition by email and send the emails to me (and I will compile them. However, Congress pays more attention to the old-fashioned kind of petition - one with real signatures on it. If we can get real petitions circulating, that's even better.
Do whatever is easiest for you, and try to get others to join.
I've put up a number of websites to help in all this, and plan to add some more - but this is enough to get started! Go to:
http://www.cfids-me.org/index.html#consensus
and let's get something rolling!
Mary Schweitzer
Petitions for the name, definition, diagnosis and treatment of M.E. and CFS in the United States
1. The petition to adop the international (Canadian) Consensus Document for ME/CFS and documents supporting it can be found at this website:
http://www.cfids-me.org/index.html#consensus
The wording of the petition is just to the left on this page.
-- Mary
2. Petition to adopt Myalgic Encephalomyelitis (M.E.) in the United States:
http://www.rescindinc.org/me-petition.html
3. "Fair name" petition to adopt the name ME/CFS, with ME described as "an umbrella term [that] will satisfy those who wish to use Myalgic Encephalopathy, and those who prefer Myalgic Encephalomyelitis" [Note: The Canadian Consensus Document explicitly uses Myalgic Encephalomyelitis/CFS.]
http://www.afairname.org/cause.cfm
Go to the
"Forum" section to discuss and debate any of these petitions or the issues raised by them.
-- Mary Schweitzer
http://www.cfids-me.org/index.html#consensus
The wording of the petition is just to the left on this page.
-- Mary
2. Petition to adopt Myalgic Encephalomyelitis (M.E.) in the United States:
http://www.rescindinc.org/me-petition.html
3. "Fair name" petition to adopt the name ME/CFS, with ME described as "an umbrella term [that] will satisfy those who wish to use Myalgic Encephalopathy, and those who prefer Myalgic Encephalomyelitis" [Note: The Canadian Consensus Document explicitly uses Myalgic Encephalomyelitis/CFS.]
http://www.afairname.org/cause.cfm
Go to the
"Forum" section to discuss and debate any of these petitions or the issues raised by them.
-- Mary Schweitzer
Forum
Found new way to do the petition 37 Replies
Started by Mary Schweitzer in Discuss Canadian ME/CFS petition. Last reply by Kasper Jun. 24, 2008.
Hard copy of petition 4 Replies
Started by Mary Schweitzer in Discuss Canadian ME/CFS petition. Last reply by Mary Schweitzer Mar. 21, 2008.
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