Fund Research for Patients with ME

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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 physician 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,

[Your name]