Tuesday, April 2, 2013

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 2nd 2013
Health Minister of Canada.


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 30th 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.
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,  

1 comment:

  1. Thanks Kati, well written letter, I appreciate you doing this. Lynn