Minister of Health of Canada: Fund research for patients with myalgic encephalomyelitis
  • Petitioned The Honorable Leona Aglukkaq

This petition was delivered to:

Minister of Health of Canada
The Honorable Leona Aglukkaq
Prime Minister of Canada
Mr Stephen Harper

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

    1. Kati  Debelic
    2. Petition by

      Kati Debelic

      Port Moody, BC, Canada

- 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

Recent signatures

    News

    1. The Aviva project: A golden opportunity

      Kati  Debelic
      Petition Organizer

      Hi everyone, the I have entered a contest in which the incoming Complex Chronic Diseases Clinic in Vancouver could win up to 150 000$ worth of much needed equipment to research patients and also help them.

      We need your support! What you can do: Vote! Click on the link: http://www.avivacommunityfund.org/ideas/acf13624
      There is a one time sign in, or you can sign with Facebook, and vote daily until October 15th. We need your support, we are close to qualify.

      Thank you!
      Kati

      Medical equipment for a new chronic diseases clinic in Vancouver @ Aviva Community Fund

      Well over 1 million Canadians suffer from chronic illnesses such as myalgic encephalomyelitis (also known as chronic fatigue syndrome), fibromyalgia, multiple chemical sensitivities and Lyme disease. Currently these diseases do not get the re...

    2. Reached 2,000 signatures
    3. Please share with family and friends!

      Kati  Debelic
      Petition Organizer

      In the light of the Harper government funding 100 millions $ funding for brain research, mentioning most diseases that would benefit but not ME or fibromyalgia.

      And in the light of a recent paper suggesting that Ontario rheumatologists were thinking of dropping fibromyalgia as part of the diseases they treat (they feel GP's can now take care of them just as well),

      I feel that this petition is very relevant to tell the Canadian government that it is not ok to sweep us under the carpet (once more) and to start contributing to interntional research and start educating our physicians on the severity and the neglect of our illness.

      I have decided to keep the petition running for a while longer, as there is no harm to keep it running and people who recently signed may want to pass it on.

      Thank you to all for signing and for your efforts in sharing this very important petition.

      Kati

    4. Reached 1,500 signatures
    5. Time to share this petition to your circle of friends!

      Kati  Debelic
      Petition Organizer

      I would like to thank all that signed this petition. The comments attached tell me that this disease affects patients and their families, and from a bigger point of view, the economy of this country. Patients suffer from the lack of care, the lack of research, and still in 2012, the Canadian government is not contributing to global search for cause, treatment and cure of this disease.

      This petition is certainly very relevant, and I am very pleased with 1150 signatures we have so far, but we need more of them to tell the Canadian health minister that enough is enough.

      The petition will be closed on May 12th, on the 20th anniversary of advocacy of ME. I will then deliver it to Mrs Aglukkaq. Today I am asking if you could please share it to your family and friends, on Facebook and other social media, to obtain more signatures. Daily signatures sends daily email to Mrs Aglukkaq and hopefully puts our disease on the agenda.

      Thank you,
      Kati Debelic, sick for 3.5 years.

    6. Time to share this petition to your circle of friends!

      Kati  Debelic
      Petition Organizer

      I would like to thank all that signed this petition. The comments attached tell me that this disease affects patients and their families, and from a bigger point of view, the economy of this country. Patients suffer from the lack of care, the lack of research, and still in 2012, the Canadian government is not contributing to global search for cause, treatment and cure of this disease.

      This petition is certainly very relevant, and I am very pleased with 1150 signatures we have so far, but we need more of them to tell the Canadian health minister that enough is enough.

      The petition will be closed on May 12th, on the 20th anniversary of advocacy of ME. I will then deliver it to Mrs Aglukkaq. Today I am asking if you could please share it to your family and friends, on Facebook and other social media, to obtain more signatures. Daily signatures sends daily email to Mrs Aglukkaq and hopefully puts our disease on the agenda.

      Thank you,
      Kati Debelic, sick for 3.5 years.

    7. Reached 1,000 signatures

    Supporters

    Reasons for signing

    • Linda Sarkar DEWINTON, CANADA
      • over 1 year ago

      For my Daughter and I to be well again, we cannot remember feeling well anymore. after 29 and 26 years. we want to live again.

      REPORT THIS COMMENT:
    • Carole Sierpien QUEBEC, CANADA
      • over 1 year ago

      I have suffered from this condition over 25 years. Am hoping for better treatment for myself and others.

      REPORT THIS COMMENT:
    • Nasreen Teekah MISSISSAUGA, ON, CANADA
      • over 1 year ago

      Person with Fibromyalgia

      REPORT THIS COMMENT:
    • Carol Deckert GRIMSBY, CANADA
      • over 1 year ago

      I operate at 50% of my former capacity. I have had this illness for 17 years and had to wait years to see specialists who could do very little for me because they themselves have no research funds. I took a cut in pension because I had to quit due to this illness--I lost $30,000 off my pension annually and $60,000 from the last five years I could not put in to my career, due to having to quit. I received no disability pension because I was advised this illness was laughed at by my Board. My GP did not know what was wrong with me and would not even help me take an early leave for 2 weeks to try and get better. My current GP knows nothing about this illness and I have to educate her and find out everything. I live with chronic daily pain with no means to relieve it--unless I choose to become addicted to drugs like Klonopin and codeine. This illness is real--I got in right after a bad viral/flu and have never been the same since. It's past time to get the government funding to help people with this illness. I almost lost my husband last month due to a heart attack and did not know what I would do as he looks after much of the household around here. Before I was a completely capable, full time worker, educated, top of my field, and now my salary alone puts me at poverty level. It is one terrible illness to get. I spend lots of money annually for relief from massage therapy. That is where my "fun" money goes which I am supposed to use to enjoy retirement. People like me and people are worse need real, tangible help.

      REPORT THIS COMMENT:
    • Alicia Castro HAMILTON, CANADA
      • almost 2 years ago

      I have ME/CFS

      REPORT THIS COMMENT:

    Develop your own tools to win.

    Use the Change.org API to develop your own organizing tools. Find out how to get started.