|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.