Friday, 16 May 2014 22:44
News - NETWORK NEWS
CIHR is undertaking a consultation process reviewing its slate of institutes. The institutes were established 15 years ago and haven't changed since then. Here is the National ME/FM Action Network's input:
On 2014-04-29 08:12, MEFM Action Network wrote to institutesmodelreview@cihr-
CIHR is undertaking a “review of the slate of Institutes to ensure that CIHR is supporting an evolving research landscape.” In particular, the External Committee is to recommend to the Governing Council “whether or not the current slate of Institutes responds to the span of the health research landscape and positions CIHR to generate and translate knowledge responding to the most exacting criteria of scientific excellence and relevance to societal needs.” The current slate of institutes was established around 2000 and hasn't changed.
We hope that the Institutes Model Review will consider the situation of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, Fibromyalgia, and related conditions like Multiple Chemical Sensitivities. Very little research into these conditions has been funded by CIHR since its founding. It is our opinion that the slate of institutes, and in particular the lack of an institute to champion cross-cutting or emerging issues, has been a barrier to research into this important area.
There is a great societal need to generate and translate knowledge about these conditions. Over 1.4 million Canadians have been diagnosed with one or more of these three conditions and they are associated with a high degree of disability, disadvantage and unmet needs.
The research questions surrounding these conditions are important and complex. ME/CFS, for instance, has been shown to have immune system abnormalities, neuroendocrine dysregulation, brain abnormalities, cognitive impairment, autonomic dysregulation/ cardiovalcular abnormalities and mitochondrial/ energy production abnormalities. A genetic component has also been noted. Addressing these cross-cutting issues is the next frontier in health research. The research will have benefits in many areas.
The National ME/FM Action Network is a registered charity founded in 1993 to work on behalf of Canadians with ME/CFS and FM. We look forward to the opportunity to contribute to this review process. We can be reached by letter, phone, fax or email.
Margaret Parlor
President
National ME/FM Action Network
#512 – 33 Banner Road
Nepean, ON K2H 8V7
Fax 613 829-8518
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