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Letter Sent from Network to Health Canada on
Federal Funding for health research into FMS and ME/CFS

COPIED Below:

December 14, 2011

The Honourable Leona Aglukkaq, P.C., M.P.
Health Canada
Brooke Claxton Building, Tunney's Pasture
Postal Locator: 0906C
Ottawa, Ontario K1A 0K9

(submitted by email at http://www.hc-sc.gc.ca/contact/ahc-asc/minist-eng.php)

Dear Minister Aglukkaq:

Federal funding for health research into FMS and ME/CFS

On April 21, 2010, we sent you a document suggesting how the Health Portfolio could reach out to Canadians with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Syndrome (FMS). We thank you for your response of February 7, 2011, (copy of letter¹ below)

One of the issues we raised in our original document relates to research funding in Canada. We provided a table showing the uneven distribution of research grants across illnesses and talked about the urgent need to develop greater research capacity around ME/CFS and FMS.

I would like to take this opportunity to update you on three developments since we last wrote to you.

1) Data from the 2010 Canadian Community Health Survey is now available. This provides an opportunity to update our analysis of the CCHS 2005 data which you can view at http://www.mefmaction.com/images/stories/quest_newsletters/Quest80springsummer2009.pdf. The 2010 data shows a 23% jump in the number of Canadians reporting a diagnosis of CFS to 411,000 and a 13% jump in the number of Canadians reporting a diagnosis of FMS to 439,000. The data continues to show that Canadians with CFS and FMS have high levels of disability, disadvantage and unmet needs.

The current situation is frustrating for patients and their families. It can take years and many doctors visits to get a diagnosis. A delay in diagnosis can have many consequences for the patient including deterioration of health, dealing with disbelief, and denial of benefits. Treatments are symptomatic and not always effective. The underlying mechanisms of the illnesses have not been sorted out even though multi-system dysfunctions are well documented.

The current situation is frustrating for health care providers. They are looking for guidance on how to serve these patients who show up at their offices continually looking for help. Very often, patients are bounced from doctor to doctor. The Canadian Consensus Diagnostic and Treatment protocols, spearheaded by our organization, are very good foundation documents for health professionals. We would like to see the protocols receive a higher profile. We would also like to see them taken to the next level of development.

The current situation is frustrating for taxpayers. They want to see the health care system working efficiently, effectively, and equitably. It would be good public policy to look at what is happening.

2) An international research and clinical conference on ME/CFS, FMS and related illnesses was held in Ottawa in September 2011. Topics covered at the conference included virology, exercise physiology, immunology, epidemiology, pediatrics, genomics and neuroendocrine functioning. There was also discussion on diagnostic and treatment issues. Health professionals from 18 countries attended. There was a strong delegation from the US CDC and NIH. We were very pleased that several staff of PHAC presented a poster on ME/CFS statistics. There is no shortage of useful directions for health research.

3) At your suggestion, we contacted CIHR to discuss their investments in ME/CFS and FMS research. CIHR staff reviewed studies that made reference to ME/CFS or FMS and identified those which were relevant to the topics. Their report is attached below. We very much appreciate the work that CIHR did. CIHR did not provide figures for its total spending on grants and awards, but I believe the numbers to be $7.9 Billion from 2000-01 to 2010-11and $900 Million in the last year alone.

The statistics for FMS show a total spending of $2.4 Million over the 11 years ($5.50 per current FMS patient over the period, or $0.50 per current patient per year) and $550k in the latest year ($1.25 per current patient). The illness is grossly underfunded considering the breadth and depth of the problem. At the same time, there is reason to be cautiously optimistic that the situation is improving. There seems to be an upward trend in the number of studies approved and in the amount of funding. We hope this trend accelerates.

The statistics for ME/CFS are extremely discouraging. CIHR identified only two studies over the past eleven years focusing on ME/CFS and only $293k was spent on ME/CFS research ($0.71 per current CFS patient over the period, or 6 cents per current patient per year.) Zero funding was provided for ME/CFS research in 2010-11. Something is fundamentally wrong.

FMS research is inadequately funded. ME/CFS research is not being funded at all. We ask you to intervene.

We dream of the day when CIHR funding for ME/CFS and FMS research reflects the widespread and serious nature of the illnesses. Hopefully that day is coming soon. Thank you for your help.

Margaret Parlor
President
National ME/FM Action Network
www.mefmaction.com

Letter from Health Canada:

November 11, 2011

Dear Mrs. Parlor,

Please forgive the delay in my response, but I wanted to ensure that the information I sent you was as complete as possible.

I have spoken extensively with our Data and Analysis Unit regarding the discrepancy between the data you recovered using the public database and the information provided by CIHR. The public database that you used to perform the keyword search for chronic fatigue syndrome and fibromyalgia contains the project that have been funded by CIHR, and lists the amount of funding that was conditionally approved for each project. It unfortunately does not contain the actual amount of funding that a particular grant or award received, therefore the actual CIHR investment may differ slightly from what is shown. The data provided in the CIHR list would have reflected the correct investment numbers.

When searching the public database using keywords, it retrieves the projects that match a list of pre-defined keywords identified at the time of application. It does not include the title, abstract, or other fields. In addition, the keywords are not always updated to reflect changing knowledge in a given field. The data that CIHR provided would have been retrieved from data that had undergone manual validation by subject matter experts to ensure that the returned projects are truly relevant to the chosen topic.

The lists that I am including now were validated by CIHR staff. Their methodology produced results that had the following keyword hits: CFS; chronic fatigue syndrome; chronic pain, fatigue and neuromuscular disease; fibromyalgia; myalgia; and myalgic encephalomyelitis. Any projects that had CFS, fibromyalgia or ME as one of the primary foci was validated as “IN”, while projects that had any of these as an example of what the research may have implications for at a later date were not included. This is standard practice for CIHR validation, to ensure that we are not overstating our investments in any particular area.

I am forwarding the numbers for total expenditures, number of active applications, and number of new funded applications in the areas of CFS and fibromyalgia. An active application is an award that received payment within a given fiscal year, and therefore a single project may appear in multiple, concurrent years. New funded applications are shown only in the fiscal year in which they received their first payment.

If you have any further questions about this data, please let me know and I will do my best to get the answer to you.

Kind regards,