Adopt the Canadian Consensus Document for diagnosing and treating ME/CFS in the U.S.

A petition to the U.S. Congress requesting the adoption of the Canadian Consensus Document for diagnosing and treating M.E./CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is available to download and sign as a hard-copy document, or to send your signature via email, at:

http://www.cfids-me.org/petition.html

Why is this petition necessary?

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” 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 and, when used in the vernacular, carries with it the stigma of failure to cope with the expectations of modern-day adulthood. The CDC once urged researchers to develop homogeneous subtypes. In practice, the opposite has occurred. Confusion over the nature of CFS has led to over-diagnosis, with patients sharing little in common except the ill-defined characteristic "fatigue." Conversely, the concept "CFS" has left far too many patients undiagnosed and untreated, with physicians mystified at the complexity and severity of an illness with such a mild-sounding name.

In contrast, Myalgic Encephalomyelitis (M.E.) remains a valid diagnosis a half-century after its creation. The definition focuses on Central Nervous System dysruption rather than "fatigue." M.E. was recognized by the World Health Organization (WHO) at the end of the 1960s. In the most recent version of WHO's International Classification of Diseases, ICD-10, both CFS and M.E. are coded at G93.3, in the chapter "Diseases of the Nervous System." The United States remains one of a very small minority of nations who have not shifted from ICD-9, where CFS is coded as 780.71, under "malaise and fatigue" in the chapter "Symptoms, signs, and ill-defined conditions." M.E. is coded separately at 323.9 under neurology in ICD-9-CM.

The Canadian Consensus Document for diagnosing and treating ME/CFS was written in response to Canada's adoption of ICD-10-CA, which required merging M.E. and CFS. The ME/FMS Action Network of Canada spearheaded the drive for the development of diagnostic and treatment guidelines for ME/CFS and fibromyalgia. A committee of experts was selected through Health Canada and met in 2001. The committee who wrote the document included clinicians from the U.S., Canada, and Belgium: 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.

An Overview written by Bruce Carruthers and Marjorie van de Sande is available through the National ME/FMS Action Network of Canada at the following website:

Overview of the Canadian Consensus Document

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 Document concludes with a bibliography of peer-reviewed journal articles supporting the information presented therein. Finally, the authors of the Canadian Consensus document have among them diagnosed and treated over 20,000 patients.

A team of researchers at DePaul University found the Consensus 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?

Adopt the Canadian Consensus Document for diagnosing and treating ME/CFS!

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For a copy of the petition to ask the U.S. to adopt the Canadian Consensus Document for ME/CFS, go to:

Petition for U.S. to adopt Canadian Consensus Document for ME/CFS.

Print the website out, or if you prefer, copy the petition and paste it unto a document file (such as WORD) in your computer, and print it from there. Send signed copies of the petition to this address:

Adopt the Canadian Consensus Document
P.O. Box 189
Elk Mills, MD 21920

You can send the petition to me by email. Simply copy the petition into the text box of an open email message, and add "I agree to this." Then put your name. Send your signed email petition here:

intlconsensus@comcast.net

To send your Representative and Senators an email requesting the adoption of the Canadian Consensus document, go here for a sample letter and links to their addresses:

Sample email letter.

Links comparing the Canadian Consensus Document for ME/CFS to the U.S. CDC's "CFS Toolkit for Professionals" can be found here:

Comparison of Consensus Document to CDC's Toolkit

Finally, if you want to enter into a discussion about the petition (and others regarding the name of the disease), go to this website, pick a name and sign in!

Petition discussion website.

Patients with this disease have suffered far too long without recognition or treatment. This must change.

Mary M. Schweitzer, USA

Email: me-cfs@comcast.net
Information on M.E. and CFS
Essays on M.E. and CFS.