Canada – open letter to gov't from family of #MillionsMissing

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Name/Nom: William A. Downey, BA, BSW
Province:  BC
Riding/Circonscription: Kelowna Lake Country
I am writing on behalf of over four hundred thousand fellow Canadian citizens whose lives have been, and will continue to be, devastated by the well-known biomedical condition Myalgic Encephalomyelitis (ME); I write as a member of the additional hundreds of thousands of Canadian citizens who are the significant others of ME patients, and whose lives and careers are also fundamentally altered and disrupted whilst we provide the substantial care and support our loved ones cannot live without.
My experience, and my overwhelming frustration, has been that our loved ones, and their illness, have been and continue to be dismissed, discounted, demeaned, and effectively disenfranchised. It is evidently not enough, in our “just and equal” society, that a person be living through the daily hell of physical torment and disability that this condition generates; no, these patients must further endure social isolation and ridicule, misdiagnosis and mistreatment by a largely uninformed and/or overtly misguided medical community, refused access to income replacement supports, utterly disregarded by their government, and a myriad other ongoing personal, social, medical, and financial disasters.
This nightmare has its roots in flawed medical and political process. Had the Canadian government formally sanctioned and promulgated the Canadian Consensus Criteria for diagnosis and treatment of ME in accordance with the long-standing recognition by the World Health Organization of ME as a biophysical disorder, then patients would at the very least have had access to properly informed medical diagnosis and treatment. Patients would have the dignity of assurance that their disorder is accorded an equal and just allocation of research funding and effort, properly guided by scientifically proven diagnostic criteria. Media would long ago have been provided appropriate scientific understandings of ME as a biophysical disorder, rather than the dismissive, demeaning, and unbelievably degrading popular concepts of “chronic fatigue” and “yuppie flu”. Friends and family would thus have had popular access to informed, intelligent, and supportive commentary similar to the coverage of other comparable disorders such as Multiple Sclerosis. Decades on, we’re still waiting.
Incredibly, our Government has never taken steps to fully and properly address this illness. I say incredibly, because the patients involved have Canadian Charter Rights to just address. Equality Rights, 15(1) of the Charter:

Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability. (2) Subsection (1) does not preclude any law, program or activity that has as its object the amelioration of conditions of disadvantaged individuals or groups including those that are disadvantaged because of race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.

We, the supporters of patients with ME, have long since wearied of the ongoing failure of the Canadian Government to adequately and appropriately recognize, fund, direct, and otherwise support medical care/research for ME; we are a frustrated and justly angry body of constituents. We are the very embodiment of the malaise which grips democracy in this nation: when government turns away from, and dismisses the needs of its citizens, then citizens turn away from democratic process.
With this letter, I call on you to rise in the House, rise in Committee, rise up in all your dealings in and with our government’s offices and officials, to finally redress the inequity which the patients with ME suffer in our great country. Allow us, the patients and their supporters within the ME community, the dignity of once again being proud Canadians, fully included in the national fabric.
Wm. A. Downey, BA, BSW.

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4 thoughts on “Canada – open letter to gov't from family of #MillionsMissing”

  1. Thank you for writing this, William! There is a lot of frustration out there on the part of families. The lack of knowledge about ME amongst family doctors, long wait-times for diagnoses and low priority for research funding conspire to make this already trying situation much worse than it needs to be. To top it off there is the isolation of patients and their families. It really helps to hear the voices of others who are feeling the same pain. Keep up the good work.

  2. Thank you William for articulating so well the concerns of ME patients in Canada.
    Some of us who sent emails on May 25 to MPs, including the Prime Minister, have heard back from the PM:
    “On behalf of the Right Honourable Justin Trudeau, I would like to acknowledge receipt of your recent e-mail correspondence regarding Myalgic Encephalomyelitis (ME/CFS).
    Thank you for writing to the Prime Minister. You may be assured that your comments have been carefully reviewed. I have taken the liberty of forwarding your e-mail to the Honourable Jane Philpott, Minister of Health. I am certain that the Minister will appreciate being made aware of your interest in this matter and will wish to give your concerns every consideration.
    Once again, thank you for taking the time to write.
    A. Opalick
    Executive Correspondence Officer
    for the Prime Minister’s Office
    Agent de correspondance
    de la haute direction
    pour le Cabinet du Premier ministre”
    But we have yet to hear from Minister Jane Philpott.

  3. William A. Downey

    Thanks for the encouragement, Shelley and Elizabeth.
    I too have received the form letter from the PMO, (imagine my delight!), and I note that it stops well short of saying that our correspondence has been read by the PM, or for that matter, even been in close proximity to that august personage. The confidence in the Health Minister’s interest is somewhat undermined by my experience to date; I have an earlier letter from her which politely tells me to get lost, they’ve already spent a bunch of money on ME, including an uncosted amount on some breathtakingly pointless and corrupt Cochrane reviews. Mind you, to be fair, this was also a “ministerial response”, which are letters written by some lower-echelon wage slave in the Ministry who’s been told to let the complainant down gently.
    Business as usual thus far. No mention in the House, no meeting, no substantive commitment, just platitudes.

  4. Thank you Cindy and William! THis is a great letter. I tweeted it to Jane Philpott and Justin Trudeau.

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