For many months the Canadian Institutes of Health Research, the Canadian equivalent to the NIH, has advised that: “The IMHA [the Institute of Musculoskeletal Health and Arthritis] 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 share 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. The IMHA continues to participate in ongoing discussions with the National Institutes of Health to synergize research activities in ME/CFS in Canada and the United States.”
The catalyst grant for ME/CFS offered $200,000 each year for three years. There was only one application for the grant, which was rejected: “The committee’s main concern with the application was that the focus on biomarkers (vs. psychosocial and non-biomarker influences) might produce information with limited value in terms of its impact on outcomes and care,” said Margaret Palor, President of the ME/FM National Action Network.
This “embarrassment to the Canadian research review process” cited 27 references, the vast majority of which are from 2003 or earlier (21/27), and over half (14) are from the 1990s or earlier. Moreover, more modern references appear to have been chosen with near-surgical precision: a 2012 study debunking the connection between the XMRV virus and ME/CFS; a 2016 study on exercise; a paper produced by a 2016 working group; and the Wessley and Chalder study on mortality in ME/CFS, which contradicts all other mortality findings in stating that there is no significant increase in mortality in ME/CFS and, like much of the work presented by the psychogenic school, has been debunked for its small sample size and vastly inclusive diagnostic criteria.
It goes without saying that no one publishing anything in the public domain should lean so heavily on older studies: new research can invalidate older research, in the self-correcting process that is the cornerstone of scientific progress. For example, the 1988 acyclovir trial cited by the reviewers was conducted before the 1988 Holmes criteria were developed. Patients studied had, not the 1994 Fukuda definition of CFS or the more stringent CCC or ICC criteria, but ‘long-term fatigue’ as a symptom, coupled with a previous history of Epstein-Barr syndrome.
[pullquote align=”right” cite=”” link=”” color=”” class=”” size=””]”Their knowledge of ME/CFS is really on the cutting edge of 1988,” one patient commented.[/pullquote]
“It probably took them several months to review the application because they had to spend a lot of time trying to get it to fit on a 5.25″ floppy disc,” commented one patient. “They were also probably having trouble finding a ribbon for their dot matrix printer. Their knowledge of ME/CFS is really on the cutting edge of 1988.”
The 2015 IOM, and NIH reports are not referenced. Neither is the recent AHRQ addendum.
The CIHR selected the anonymous review committee. It appears clear the review committee are supporters of the psychogenic model of ME, and it seems clear the CIHR supports the psychogenic model of ME.
The application notes “The disease is challenging because the etiology and pathophysiology are not well understood.”; however, there is no evidence that CFS is a disease…. There is evidence that suggests labels assigned to medically unexplained syndromes are an artifact of medical specialization.(3)
The author then goes on to add,
Harrower (21, 22) described the [ME] patient as being characterized by a “need to excite sympathy.” She attributes [this] to a premorbid personality structure… Blatt and Hecht (24) found that about 50 per cent of their group of 21 subjects demonstrated… patterns suggestive of an hysterical personality. The latter investigators believed that a differential diagnosis between [ME] and hysteria is a misleading one, as the hysterical personality structure is consistently associated with the disease itself.
Wait; no, I’m sorry. That’s from a 1961 paper on psychiatric manifestations in Parkinson’s and Multiple Sclerosis, with ‘MS’ replaced by ‘ME’. To be fair, the paper is a lot more objective than the authors of the grant refusal. Neurological illness is often placed in a psychological framework before its etiology is well-defined, and before there are advocates beating down doors, is what I’m saying.
Some additional excerpts (really) from the grant refusal document, however, bear a remarkable resemblance. ‘Personality-based medicine’ might as well be medicine via Sun Sign, but when you link it back to the HPA axis in the manner of psychosocial theorists everywhere, the veneer of credence is lent to the proceedings:
Psychosocial factors are strongly associated with the development of CFS. For example, Hatcher and House reported the results of a case control study that found patients with CFS were more likely to experience severe events and difficulties in the 3 months (odds ratio [OR] = 9, 95% confidence interval [CI] 3.2 to 25.1) and year (OR = 4.3, 95% CI 1.8 to 10.2) prior to onset of their illness than population controls.(6) Individuals with CFS have been found to rate themselves higher than controls on the ‘hard-driving’ and ‘many outside interests’ of the Bortner type A personality scale.(7) Individuals with CFS have also been found to adopt confrontational coping styles and to rate themselves highly on an ‘action proneness’ scale.(7,8) CFS has been found to be associated with a Defensive High Anxious coping style,(9) which may directly affect physical well-being through the hypothalamic-pituitary-adrenal (HPA) axis (10).
And finally, patients perpetuate CFS symptoms via psychological mechanisms:
Vercoulen et al. have developed and validated a model to explain the perpetuation of CFS.(12) Their model was able to account for the experience of fatigue amongst CFS sufferers through three factors:  focusing on bodily symptoms,  low physical activity, and  low sense of control.
Presumably, the author feels that Stanford University and Columbia University are performing biomedical research out of a lack of genuine concern for the patient population:
The stated goals of the proposed network are reasonable (i.e. create a research network, standardize care, provide education to researchers and clinicians, and host an annual meeting to develop collaboration); however, the strong focus on undiscovered physical pathology and failure to acknowledge the substantial literature that has established psychosocial factors as both a cause and perpetuating factor for CFS is concerning.
My concern lies with the lack of details regarding what the applicants refer to as best care for CFS or what their educational program will involve, the very limited attention to the role of psychosocial factors in CFS, reliance on the Alberta CFS Guideline which appears to have serious methodologic limitations, and the apparent strong focus on unidentified physical pathology as causative of CFS.
Canadian activists will be working on replies to forward to Health Minister Dr. Jane Philpott: more on this soon. You can read the press release based on this decision by clicking here.
If you’re a US citizen, please consider contacting your Congressperson about solidifying support for NIH-funded research! There are instructions and every fact you’ll need at your fingertips. More info here.
What was the upshot? Learn about CIHR’s response to the matter here.