Petition to the Health Minister sent.

Over a year after creating the petition to the Canadian Health Minister, I finally printed it out and sent it. It feels good but in the same time I am not holding my breath. The following is the letter sent with it. I have also attached (with permission) Llewellyn King's fabulous piece on CFS, Margaret Parlor from the National ME/FM Action's piece titled Network's Inquiry to CIHR (CIHR stands for Canadian Institutes of Health Research) I felt that both needed to be added- and that the story of neglect and stigma needed to be told.

As a side note I am a terrible editor and notice the mistakes on this letter now... I just wanted to get it done and I am glad it is.

The Honorable Leona Aglukkaq, Tuesday April 2^nd 2013
Health Minister of Canada.

Madam.

I am writing you today to present you with an online petition that has been circulating since February 2012.

The petition request action from the Canadian government to fund research for myalgic encephalomyelitis, also known as chronic fatigue syndrome. I am please to say that 2486 people signed and over 260 commented with pleas for help.

Myalgic Encephalomyelitis is a serious disease for which the number of patients doubled in Canada from 2001 to 2010 according to the Community Health Survey. And yet your January 30^th response to Order Paper #1044 still mentions that the population is stable and that the disease is stable. This is far from the truth.

Typically patients with ME disappear from society and loose the capacity to get heard. Governments do not think it is a serious disease from its old name and physicians do not even hear about this disease while in medical school.

This disease also encompasses many institutes at CIHR which makes it difficult to nail funding. More popular diseases like diabetes, heart diseases, HIV/AIDS and cancer are favored by researchers, making diseases like fibromyalgia and ME left behind. In fact who would spend weeks and weeks applying for a grant for a diseases that is very unpopular and stigmatized when the chances to have it accepted are nil?

You have said many times that health care belongs to provinces, however it does not prevent you from getting involved with HIV/AIDS and also announcing a 100 millions funding for brain diseases.

There are 411 466 patients with Myalgic Encephalomyelitis in Canada (2010) who have no health care, no current Canadian funded research, high amounts of unmet health care needs, and I dare say a highly neglected and stigmatized disease across society, government, science and medicine. It is time that the Canadian government pay attention and start acting.

My February 2012 letter to you is still left unanswered despite receiving an acknowledgement letter from your office in the summer.
It would be worthwile for you to review it.
http://x-tremedenial.blogspot.ca/2012/02/letter-of-advocacy-version-february.html
Along with the petition papers I am attaching a letter titled “Network Inquiry to CIHR” (National ME/FM Action Network) and also an Op-ED by syndicated columnist Llewellyn King, with the hope that it may be useful to you in understanding the neglect and stigma to this disease.

Regards, Kati Debelic,  

The petition: will you help me get more signatures?

- 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.


You can sign here