Sunday, March 23, 2014

Open letter to the Canadian Institutes for Health Research

The following is an open letter to the Canadian Institute for musculo-skelettal health and arthritis, and the 2 delegates which attended both the Stanford ME conference and the IACFSME conference.



Dr El-Gabalawy and Mrs Stirling

I would like to thank you for attending both the Stanford and the IACFSME conference in San Francisco this week. 

I hope you are just begining to understand the stigma surrounding ME and FM in society, in health care, in research and amongst government entities. It has now been 30 years since Lake Tahoe and Lyndonville, NY epidemics, and not only patients have remained sick, they have for the most part been ridiculized and denied health care. Some patients could no longer wait and committed suicide and yes this happens in Canada too. 

Personally I got sick at age 39, 51/2 years ago when a patient sent saliva straight to my mouth while talking, and I contracted EBV. It was the last few weeks I worked as a RN. This disease disables, and takes us away from our lives. It is not about being tired.  I loved my job and spent my holidays cycling the world. These days I cannot walk a block. 

What patients like me need is a health care system which does not discriminates. We need our disease recognized within a medical specialty, so it can be treated with as much respect as HIV or cancer or rheumatoid arthritis. We need biomedical research and access to drugs that could have a likelihood to help. I have had Rituximab in the past 2 years, sadly it didn't work for me. I am now been started on Valgancyclovir. i am very thankful for my California physician for offering these treatment modalities for me and other patients he sees. 

I am very distressed that my canadian health care system cannot even comprehend what kind of care I need. Having been an oncology nurse, I know what is evidence-based treatment and I know how funding directly impacts the health of patients. Patients with ME and FM have clearly been left behind. The earlier this is recognized within the Canadian government, the faster it can translate into research, treatments and recovery for these patients. 

Patient engagement is a very popular concept at the moment. I have great hope that you can engage all patients in moving the ME and FM agenda forward in Canada. 

Lastly, meditation, CBT, and graded exercise therapy are just as effective for HIV patients as for patients with ME.  (However you will note that these treatment modalities are not known to reduce their viral loads) These are certainly not treatments and research funds would be best used for science, like immunology, neurology, and such. Self-help therapies have taken us so far, patients all know about them, and patients already know what a healthy diet means for them. We need hard research. Canada needs to engage and participate in international research. 

Sincerely, Kati Debelic, former RN, sick for 5.5 years
Port Moody, BC




6 comments:

  1. Well written Kati. Bravo and thank you! Will write too; the more that Drs El-Gabalawy and Mrs Stirling hear about the urgent need for research (and accelerated drug approval processes like the FDA) for ME patients in Canada, the better. Canadian patients; this is one time we really need to make a noise: gird your loins; write to these 2 bold members of CIHR and tell them about our plight and about the urgent need for biomedical research and treatments in Canada - not band-aid "coping" strategies that can make us uniquely worse. (Maxine)

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  2. Thank you Maxine. My letter may not be perfect. But it is my opinion that the CIHR need a large influx of letters. Let's tell them how we've been treated, stigmatized, abused. And left for dead.

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  3. Thank you Kati. I'll try my best although, after 28 years, my ability to write anything cogent has deteriorated terribly - along with everything else, thanks to M.E. Is email or an actual letter more (See? Can't even think of a word!) useful? Which would have the most effect? (Lindy)

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  4. Hi Lindy, thanks for your comments. Use the format you feel best, email or handwritten. The government keeps all email, I have a proof of that with past correspondence. Don't worry about it not being perfect or too bright. What strikes me in the little bit I have read from your comment is that you've been 28 years at it. :-( that needs to be told and is very valuable in my eyes. The government and CIHR needs to hear that.

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  5. Thanks Kati. It certainly won't be handwritten. I used to have beautiful handwriting but, now, I can't even read it myself.:-) Yeah, 28 years. I used to say 25 (okay, that makes no sense - I didn't always say 25) because I got it after a one week trip to England, when I was 40. Well, I crashed, then. But there was no illness preceding that so it never made sense. Now, however, after talking to others, I think it began 3 years earlier, after my second bout of Shingles in two years. I started to pile on weight and was dragging myself around for those 3 years, just keeping going. The trip was probably the final straw. Most of the time I've been moderate. I had two brief remissions (about a year, each) - but, even then, I couldn't do what healthy people could do. For slightly over two years, I've been housebound/bedbound - more and more bedbound and, constantly, getting worse during those 2 years. Anything I do - sign petitions, write lousy e-mails, donate money - is for you younger ones. I'm a realist and I don't feel as if I have a lot longer to live but I always hold out hope for younger generations. Thanks for everything you do, Kati. I know it must be difficult for you but you do a great job. (Lindy)

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  6. There goes half of your letter, Lindy. This is a very valuable story. i share a lot as for onset and weight changes. I hope I don't reach 28 years of this disease, not to mention the stigma.

    I won't deny it, the last 8 months have been very hard, with the awful experiences that I've had. Reopening the blog gives me a voice, and it's a good thing.

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