Monday, March 31, 2014

The Canadian government responds with (not-so) sweet nothings.

I am disbelieved that the Canadian government thinks that patients with ME and FM are well taken care of and that we should stop complaining.

For 30 years now since the epidemics in Lake Tahoe and Lyndonville and around the world, patients have been told that this disease is in our heads, that it doesn't exist and that we are not worthy of being researched. 30 %$^&*&* years. Patients have disappeared from circulation. They have become recluses. They have committed suicide. They have stopped existing.

And last week, my Canadian government told me I should be happy with the peanuts they've thrown us, that they have invested 600 000$ for ME research since 2006. For the 411 466 of us.

And while this is happening, the Malasian flight MH370 is lost at sea, air and sea fleets are deployed to search out an entire ocean for a plane and its 240 passengers and crew. Imagine how much the search efforts cost. We are beyond millions by now- hundreds of millions, which has been given out with very little warning, to search for the plane and its occupants. And they mentioned again today in the news they would not give up until they found the plane and have explanations as of what on earth happened to these people and why.

Mr Harper, prime minister, Mrs Ambrose, minister of health, we are lost and we need to be found. We are Canadians. We have paid our taxes. We are mothers, fathers, sisters, brothers, children. We have been left behind for DECADES.

For decades we have been told there is no money for us. All that while, the HIV epidemics has been taken care of, and in fact, there are so much money for HIV research that all the researchers have had no choice but applied for HIV grants.

For decades there has been the belief that ME  and FM patients are malingerers, are faking an illness, that it's all in our heads. The script has been so well learnt that physicians know it as well. They got nothing for us. They are telling us we need cognitive behavioral therapy to learn to ignore our bodies telling us something is definitely wrong, and graded exercise therapy to learn to go back to society.

For decades researchers have learnt that researching ME would be a career suicide. Physicians have been forbidden to be curious and think outside the box. And for decades, patients have been tied to their beds, too sick to speak up.

In the meantime, scientists have done research on the side. Some of them could not even publish, because journals don't want to publish that stuff. There is so much stigma. And evidence that indeed something is wrong with our immune system, our nervous system, our mitochondrias and much more is still surfacing. All that while, my canadian government refuse to collaborate, research, fund ME and FM research. All that while, my canadian government refused to look at the statistics from the Canadian Community Health Survey that counted 200 000 of us in 2001 and 411 466 in 2010, and puts this disease in the most neglected category.

From the CIHR funding database, I can see that Canada is funding over 260 millions of dollars for HIV research. Meanwhile, if Canada spent 200 000 for research that is strictly for ME it would be a good thing. But of the 2 research grants, one was related to XMRV- a potentially infectious retrovirus that ended up being discredited association with ME and the other research is about RNASE-L, an enzyme that is lacking in several different diseases, and this grants does not specifically research ME. Essentially, Canada funds 1 000 000 times more HIV than ME which affects  411 466 patients in Canada.

The level of stigma and neglect at the government level as in society for diseases like ME and FM is unbelievable. You do not know what you are facing, until you get sick with it. Very few understand what it's like. By turning your backs on the diseases makes it more painful. It is not unlike the way patients with MS have been treated in the past before imaging was advanced enough they could see the lesions in the brain. Before that, patients, mostly women, were deemed 'hysterical', diagnosed with hysterical paralysis and hospitalized in mental hospital. And up to 1991, it was believed that type A personalities was the cause of stomach ulcers and that sufferers had to undertake psychotherapy and relax a bit. These days, stomach ulcers is easily diagnosed and treated with a simple round of antibiotics.

What have we learned from diseases that were so stigmatized in the past, epilepsy, Parkinsons, once more, MS and the HIV epidemics? We have learnt that funding for research helps a whole lot in understanding the disease and the quality of life of its sufferers.

And what I am learning from having this disease, is that name matters. for 25 years this diseases has been called chronic fatigue syndrome, as ordered by the CDC to minimize the seriousness of the illness. And it's succeeded in making it dead last in the list of priority for funding all around the world. Compared chronic fatigue syndrome to its original name, myalgic encephalomyelitis, which makes neurologist very nervous because all of a sudden it sounds just terrible and it could not be possible that it's such a serious disease.

So while you are waiting for the CDC to decide whether it is a serious illness, I am asking you, Mr Harper, Mrs Ambrose, how convenient is it that my disease is called chronic fatigue syndrome and that by the way, everybody is at least a little tired from their busy life. How convenient is it for the CDC to keep this disease in the shadows, poorly defined  and not deemed serious? How convenient is it that no medical specialty wants to touch us patients with a stick, because this is what's happening out there.

411 466 patients in Canada are very seriously ill, and 25% if not more is housebound or bed bound and waiting.


Here are the answers of Order Paper #244
The official response  (for people with cognitive issues like patients with ME and FM this format is torture)

Extracted questions and answers


These are in my opinion is non- answers. It's insulting. It's outrageous. Please try harder. Please ask Dr Hani El-Gabalawy and Mrs Liz Sterling from the Canadian Institutes for Health Research, Musculo-skelettal health and arthritis Institute about what they have learnt from their 5 days conference in San Francisco this last week.

Engage with patients. Ask them what it's like to live with these diseases and how they have been treated by their health care system which should be free.

Engage with the physicians. Ask them what they know about ME and FM. Ask them to assign ME to a medical specialty and that psychiatry is not one of them.  Patients not belonging to a medical specialty leaves us to a family dr who has no time nor energy to learn about a complicated diseases, and most of whom have no clue what natural killer cell function is.

Research stigma in ME and FM. Engage with the scholar and ask them to research stigma as it applies to ME and FM. Do not leave the housebound and bed bound behind. They have stories to tell too.

Assign 10 millions of research per year for 10 years and see how far we'll go with that. Use very curious researchers, such as Michael Houghton or David Patrick. Use the Canadian Consensus Criteria to define your patient cohort. Search blood, tissues, and body fluids, and use the latest technologies. It's not that hard.

We are the passengers on MH370. Missing for the last 30 years. Please find us.



3 comments:

  1. Milo, your analogy with the passengers on MH370 is chilling, and right on the money. Missing for the past 30 years. But the abject neglect millions of us have faced is scandalous, especially when compared to the no-hold-barred, all-out hunt for MH370.

    Thank you for your advocacy on our behalf!

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  2. Thank you so much for writing about this Kati. It is nice to finally find out what the Canadian Govt is doing or in this case not doing. Do you know if any patients are planing on doing anything in response to these pathetic answers? I was thinking that Canadian patients should write to Dr. Fry to thank her for submitting the questions and tell her our stories to give her more to work with if she decides to help us more. I also had the thought it might be a good thing to do for May 12th awareness day.

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  3. Thank you @Anon for this comment, I appreciate it.
    @Cheri, I haven't heard of a campaign for Canada as of yet but it's an excellent idea. Thank you to Dr Fry is good, with hopes that her party gets elected next year. I think that more importantly, a writing campaign aimed at Rona Ambrose and the CIHR asking for research funding would be wonderful as well, and powerful considering Dr el-Galabawi (sp) at the institute of musculo-skelettal health and arthritis attended last month's international conference in San Francisco. We need to put pressure.

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