Petition Closed
Petitioning Minister of Health of Canada The Honorable Leona Aglukkaq and 1 other

Minister of Health of Canada: Fund research for patients with myalgic encephalomyelitis


- Myalgic encephalomyelitis, also known as chronic fatigue syndrome, is recognized as a disabling nervous system disease, according to the World Health Organization classification of diseases.

- The 2010 Community Health Survey calculated that over 411,000 Canadians have the disease,  23% more than in 2005 and a staggering 205% more than in 2001. 

- No medical specialty is embracing this disease, resulting in patients left to their own device, or with a general practitioner who does not have the knowledge or time to deal with patients with this complex disease. Patients are literally falling through the cracks, or going from doctor to doctor on the search for competent health care. Some have simply stopped searching and have become housebound or bedbound.

- Patients are stigmatized, largely because of the misleading and inadequate other name for the disease: chronic fatigue syndrome. This is comparable to the prejudice and ignorance patients faced in the early years of HIV/AIDS. A lot of physicians think ME/CFS is a psychological or psychiatric disease, which is contrary to the large body of scientific evidence.

- Canadian research funding for ME/CFS in the last 10 years equals to 6 cents per patient per year for this disease.

-Some experts in the field of ME/CFS say that this disease is just as disabling as patients with progressive multiple sclerosis, congestive heart failure or late stage AIDS.

- Recent research points to chronic immune activation, autonomic nervous system dysregulation, complex pain syndrome, viral reactivation, and possible pathogens involvement as biological abnormalities found in ME/CFS patients.

-Norwegian researchers have found that 67% of patients were significantly improved by the cancer drug Rituximab. Consequently the Norwegian government apologized to its people for neglect of ME patients.

 

Therefore, we patients with Myalgic Encephalomyelitis (and supporters) feel we are discriminated against, left behind, and request immediate action be taken by the Canadian government:


- Research funding at the same level as other chronic disabling neurological diseases, such as multiple sclerosis, which afflicts half as many people as ME/CFS.
- Provide financial incentives for scientists to research this disease.
- Provide incentives for physicians to study and care for patients with ME/CFS.
- Encourage clinical trials with Rituximab or other drugs that are considered hopeful from the IACFS/ME, the international organization of medical professionals specializing in ME/CFS.
-Stop wasting precious money on the psychiatric research as it relates to ME/CFS.
- Provide support for all provinces to open clinics to care for patients with ME/CFS and related complex diseases, including fibromyalgia, multiple chemical sensitivities and Lyme disease.

 

Note: This petition is a companion to the open letter to  Mrs Leona Aglukkaq over here: http://x-tremedenial.blogspot.com/2012/02/letter-of-advocacy-version-february.html

Letter to
Minister of Health of Canada The Honorable Leona Aglukkaq
Prime Minister of Canada Mr Stephen Harper
I just signed the following petition addressed to: the Honorable Leona Aglukkaq, Minister of Health of Canada.

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Fund research for patients with myalgic encephalomyelitis

The Honorable Leona Aglukkaq, health minister



- Myalgic encephalomyelitis, also known as chronic fatigue syndrome, is recognized as a disabling nervous system disease, according to the World Health Organization classification of diseases.

- The 2010 Community Health Survey calculated that over 411,000 Canadians have the disease, a staggering 23% more than in 2005.

- No medical specialty is embracing this disease, resulting in patients left to their own device, or with a general practitioner who does not have the knowledge or time to deal with patients with this complex disease. Patients are literally falling through the cracks, or going from doctor to doctor on the search for competent health care. Some have simply stopped searching and have become housebound or bedbound.

- Patients are stigmatized, largely because of the misleading and inadequate other name for the disease: chronic fatigue syndrome. This is comparable to the prejudice and ignorance patients faced in the early years of HIV/AIDS. A lot of physicians think ME/CFS is a psychological or psychiatric disease, which is contrary to the large body of scientific evidence

- Canadian research funding for ME/CFS in the last 10 years equals to 6 cents per patient per year for this disease.

-Some experts in the field of ME/CFS say that this disease is just as disabling as patients with progressive multiple sclerosis, congestive heart failure or late stage AIDS.

- Recent research points to chronic immune activation, autonomic nervous system dysregulation, complex pain syndrome, viral reactivation, and possible pathogens involvement as biological abnormalities found in ME/CFS patients.

-Norwegian researchers have found that 67% of patients were significantly improved by the cancer drug Rituximab. Consequently the Norwegian government apologized to its people for neglect of ME patients.

Therefore, we patients with Myalgic Encephalomyelitis (and supporters) feel we are discriminated against, left behind, and request immediate action be taken by the Canadian government:

- Research funding at the same level as other chronic disabling neurological diseases, such as multiple sclerosis, which afflicts half as many people as ME/CFS.
- Provide financial incentives for scientists to research this disease.
- Provide incentives for physicians to study and care for patients with ME/CFS.
- Encourage clinical trials with Rituximab or other drugs that are considered hopeful from the IACFS/ME, the international organization of medical professionals specializing in ME/CFS.
-Stop wasting precious money on the psychiatric research as it relates to ME/CFS.
- Provide support for all provinces to open clinics to care for patients with ME/CFS and related complex diseases, including fibromyalgia, multiple chemical sensitivities and Lyme disease.

Sincerely,