|Toronto – August 28, 2016 –
“This is ludicrous!” writes Dr. Ian Hyams about the Canadian Institute of Health Research (CIHR) decision to deny funding for a networking grant for the neurological disease Myalgic Encephalomyelitis (ME). Dr. Hyams, Medical Director of the Chronic Pain and Fatigue Clinic, expressed further concern stating that “the grant refusal is a major setback” for research into ME. “Why is this country so behind the times in recognizing the severity of these disease states?”
Why indeed, would CIHR reviewers dismiss a chronic, complex illness as not “a disease” and preclude any biological research as “research focus on biomarkers is likely to provide limited additional value”? Federal Minister of Health Dr. Jane Philpott has been under increasing pressure to address the flawed CIHR funding system as researchers become increasingly discouraged with decisions.
The CIHR reviewers’ stance is in direct contradiction to Health Canada’s position in its 2003 Canadian Consensus Criteria (CCC) that ME “is an acquired organic, pathophysiological, multi-systemic illness that occurs in both sporadic and epidemic forms”. The CCC further states ME as a neurological disease with “compelling research evidence for physiological and biochemical abnormalities”.
Independently funded epigenetic research coming out of Dr. Patrick McGowan’s lab at the University of Toronto indicates biomarkers are imminent. PhD student Wilfred De Vega, who will be presenting their new findings on ME patient samples at an international ME conference in October, stated that “epigenetic changes are potentially reversible, therefore our results provide a foundation for biomarker research”.
This CIHR funding decision to reject the only application for the only ME grant has left Canadian researchers not just scratching their heads, but banging them against the wall. The controversial new online peer review system for CIHR funding decisions has rejected the Catalyst Grant application to establish a national network of ME researchers. “We are amazed that there are still those in high positions in this day and age involved with CIHR who can make such an unscientific and completely inaccurate statements about ME” said Lydia Neilson, CEO and Founder of the National ME/FM Action Network, in reaction to the application rejection.
BACKGROUND: 25% of ME patients house or bed bound
In 1969 the World Health Organisation’s International Classification of Diseases classified ME as a distinct organic neurological disease with the code G93.3. Of the more than 400,000 Canadians living with ME, approximately 25% of patients are house or bed bound. The most severely affected can neither walk nor talk.
According to the 2014 Canadian Community Health Survey, ME patients have by far the highest unmet healthcare needs of all chronic diseases. Quality of life indicators reveal ME patients’ experience to be approximately 15 times worse than cancer and two times worse than having a stroke.
CIHR’s data indicates ME research is by very far the least funded of all serious chronic diseases. In 2016, research funding for other similarly disabling diseases such as Multiple Sclerosis, Alzheimer’s Disease, Parkinson’s Disease and Epilepsy is an average of $158 per patient, while for each ME patient it is 11 cents.
The funding decision is a severe blow to ME research in Canada. Researchers lament that unqualified reviewers seriously damage scientific progress causing immeasurable repercussions in patient treatment and quality of life.
The ME research and patient community is concerned that the psychosomatic view of ME held by the CIHR reviewers is indicative of systemic bias that reaches to the upper echelon of the healthcare system including Minister Philpott’s office. Ms. Neilson observed “As these individuals represent CIHR, we can only presume that this is CIHR’s opinion.”
Millions Missing Canada observes that the psychiatric lobby has been successful in usurping the biological evidence of ME as a neurological disease and in inserting its psychosomatic bias at all levels of healthcare from government to research to medical schools to the doctor’s office. The result has been to effectively turn Canadian ME patients into healthcare system victims with no research funding and no access to appropriate treatment and healthcare.
Millions Missing Canada is a grassroots group advocating for a national strategy for ME including research funding and healthcare access for myalgic encephalomyelitis patients. Stop the harm. Start the research. Start the treatment.
A question we ask ourselves every day:
Where are the millions of missing dollars of funding that should be invested in ME research?
Media contact: Scott Simpson
Note: Myalgic Encephalomyelitis is erroneously used by some interchangeably with the controversial term ‘chronic fatigue syndrome’ (CFS), a term not readily accepted within the ME community due to the misleading phrase and historically dismissive connotation.
5 thoughts on “Canada: Research Reviewers as Disease Denialists”
The Canadian grant review was just inexplicable. It cannot represent many Canadian researchers.
What are Canadian advocacy groups are doing about this (???)
Well, they did write that press release and sent it out…. 🙂
It’s unexplainable right?? It make no logical sense right??? as I have mentioned many times before, since me/CFS is such a complex disease that they can’t not masked and make it look like just an unexplainable neurological disease like they do with most of other diseases like, MS, ALS, GUILL-BRR,HASHIMOTO,etc..they can not presented to the world just as an unexplainable neurological disorder, Me/CDS.. Resemble more of a complex disease like AIDS.they Have to dismissed block it, limited , couse they know digging deep to find so Many cellular and immune disfuntion will lead últimatly to find the underlaying cause…and that underlaying cause is a BIG BOMMM.. that probably many millions of people will test positive to it.
Like I said to Jaime s on my previous comment on Naviaux. Study this may explain why NIH, CIHR.. And every other goverment UK, AUSTRALIA.. Have not recognized and block limited and dismissed ME/CFS.
Anyone who received a letter from any MP, including the Health Minister, Dr. Jane Philpott, that notes a commitment to funding/supporting the national research network, please send a copy of this letter to your own MP, and Minister Philpott. Please advise Minister Philpott to honour her commitment to the research network, as noted in the letter you received.
Minister Philpott sent me a letter in February, which contained the following: “The IMHA has committed to supporting the creation of a national network for translational research in ME/CFS in 2016-2017. This network will facilitate capacity building and provide a forum to discuss ideas and shape best practices. It will also provide the infrastructure needed to undertake therapeutic and diagnostic clinical studies in Canada. In addition, this network will set the stage for future international collaborations.”
Please note the words: ” The IMHA has committed to supporting the creation of a national network…”This is a commitment. A guarantee. A guarantee that should be honoured. Many other people received a very similar letter following the May 25th MillionsMissing Campaign. I was sent two more from other MPs. If you have received such a letter, please send a copy to your local MP, and Minister Philpott, with a request that the Health Ministry honour its commitment to funding this application.
As well, you can ask Minister Philpott to investigate this issue. This is officially called a Ministerial inquiry. There are no forms to fill out. You just ask the Minister, and/or your MP to look into this for you. Any comments on the review process would be helpful to send to the Health Minister.
And, any citizen of any country who will be tangentially affected by this government misstep, please write to our Health Minister, the Honourable Jane Philpott.
Please consider writing to the Honourable Jane Philpott about the following:
1) ask her to honour her promise to fund a national ME research network in Canada;
2) express your concerns, and analysis of the grant application reviewers’ comments: http://mefmmembership.com/Catalyst-Grant-C2SAME_previewAps.pdf
3) ask her to adopt the Canadian Consensus Criteria: http://mefmaction.com/images/stories/Medical/ME-CFS-Consensus-Document.pdf. Despite its name, and its country of origin, the CCC has never been adopted by the Canadian government.
4) ask for substantive research funds, commensurate with the impact and number of ME victims in Canada: 407,789, as per the 2014 Canadian Community Health Survey: http://www.statcan.gc.ca/daily-quotidien/150617/t002b-eng.htm
5) and any other comments you feel would be worthwhile.
Minister Philpott’s email addresses are: [email protected] and [email protected]
A good question to ask is: where were the grant application reviewers from? Maybe they were not Canadian. It would stand to reason that Canadian experts should be reviewing Canadian grant applications. Different countries have different standards. Look at the UK. The situation for ME patients there is in the Dark Ages. If the Canadian government went out of country for these particular reviewers, then that might point to the fact that no ME experts in Canada are anti-biomedical. Of course, if you call yourself a ME expert, and you’re anti-biomedical, then you are NOT a ME expert. It should also be a message to the CIHR that there were no applications from the psychogenic camp for this funding.
Another concern is that the reviewers for this application were anonymous. How can the government assure the Canadian public that the most qualified reviewers were selected, if this is a secret process? Who is behind the curtain? This appears to have been a systemic problem with the CIHR review process.
The ME research/network applicants are not alone in their problems with the CIHR. Below is an article from late last year about many general problems with the grant application review process. Here are some quotes from the article: “…new review system is arbitrary, opaque and lacks accountability…many reviewers no longer appear to be experts in the fields they are reviewing… Review panels no longer meet face-to-face to reach a consensus on a research proposal…Instead, reviewers comment online, sometimes leaving inappropriate comments in the mix…An element of arbitrariness and lack of accountability has been introduced that makes it a little more of a lottery…at least 2 researchers say they know hospital librarians who have been asked to review research proposals under the new system…even people applying for grants have asked to be reviewers, which means they could, theoretically, be assessing their competitors for scarce funding dollars.”http://ottawacitizen.com/news/local-news/demoralized-scientists-demand-changes-at-1b-health-research-agency
And bias; clearly the reviewers were biased in favour of the psychogenic model of ME. If you’re jurying anything: art, cars, dogs, horses, you name it, if you have a pre-established bias, and an axe to grind, then anyone who doesn’t fit into your picture of how things should be may be out of luck.
The problems with the CIHR review process have caught a lot of press in Canada. More recent articles from July, say the process has been fixed. Apparently, there are now video conferencing reviews as a first step, then face-to-face reviews later. The ME application was caught in the old method, and this needs to be pointed out to the Ministers, and remedied.
In addition to writing to Minister Philpott, please consider writing to the Science Minister, Kirsty Duncan : [email protected] and tell her how unscientific this process was. The new Liberal government has said they want to re-focus on basic science; the previous administration had gone away from that, to science that generates a product for sale. As well, please consider writing to the Minister of Innovation, Science and Economic Development, Navdeep Singh Bains: [email protected]
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