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A Little History

Given our vaunted insularity, many in the U.S. may not know of the role Canada and Canadian figures have played in ME/CFS. The Canadian influence has been strong and it’s growing.

So far as I can tell and I’m no expert the Canadian influence began in a big way with Dr. Byron’s Hyde’s immense and lavishly illustrated The Clinical and Scientific Basis of Myalgic Encephalomyelitis–Chronic Fatigue Syndrome (1992) and his Nightingale Research Foundation website. That book was the bible for many researchers and patients for years (and Hyde has another one on the way).

Dr. Bruce Carruthers, a Vancouver specialist in metabolic disorders, and other Canadians (and some Americans) and others made a profound impact worldwide with the development of the Canadian Consensus Criteria which knocked the CDC’s Fukuda and Empirical Definitions out of consideration and re-inserted post-exertional malaise into ME/CFS diagnostic criteria for good.

Besides seeing ME/CFS patients for years, Alison Bested M.D. has penned several well-regarded ME/CFS treatment guides, co-authored the IACFS/ME primer for physicians, and created a diagnostic protocol for physicians. Dr. Peter Rowe, now at Johns Hopkins, who hails from Canada, has been a key figure in ME/CFS pediatric care and understanding the role orthostatic intolerance, Ehlers Danlos Syndrome and others play in ME/CFS. His hypothesis on connective tissue disorders in ME/CFS is fascinating.  Eleanor Stein M.D. in Calgary (brr!) has produced treatment and diagnostic guidelines on ME/CFS including one on how to differentiate ME/CFS from psychiatric disorders.

Hailing from Alberta (brr!), Valerie Free’s “Lighting up a Hidden World: CFS and ME” is the best single resource on ME/CFS I’ve seen in years).

Bearing Witness for ME/CFS – Valerie Free Lights Up A Hidden World: Pt. I Valerie’s Story

Some Canadian researchers who have come to the fore lately include Gordon Broderick (now at Rochester General Health), Travis Craddock (at Nova Southeastern), Patrick McGowan (University of Toronto) and David Patrick (British Columbia Centre for Disease Control). The latest Canadian researcher to join the ME/CFS research community is none other than Dr. Alain Moreau, who attended the OMF’s Stanford ME/CFS Workshop, conceived the Canadian Conference, and received a federal grant to produce it.

Canada is the only country I know of to get chronic fatigue syndrome (ME/CFS) inserted into a national health survey (Canadian Community Health Survey (CCHS)). The 2010 survey, which found near equal numbers of ME/CFS and FM patients, suggested that the number of ME/CFS patients in the U.S. might be much more numerous than suspected. The survey also indicated the disease was causing levels of disability similar to those found in Alzheimer’s and stroke.

Last year, an Ontario task force, in a 58 page report to the Minister of Health,  presented numerous recommendations needed to provide much needed support for the 550,000 ME/CFS/FM and MCS patients in the province. This year Canada is sponsoring its first International Conference and is providing funding for a collaborative research center to work with the three NIH funded research centers in the U.S.

CIHR is participating as an international collaborator on this NIH initiative, and will provide funding to one Canadian multidisciplinary team to participate in the ME/CFS Collaborative Project with NIH’s CRCs and DMCC. The successful Canadian team is expected to coordinate with existing initiatives in the field, to forge links with the wider community (including practitioners, policy makers and service users) and include additional partners, such as commercial or industrial representatives where appropriate. Additionally, the successful team will encourage collaboration, communication and training that will extend beyond the lifetime of the five-year grant.

Canada’s major advocacy group, the National ME/FM Action Network, has been in action since 1993. Its website provides many resources, including a legal library. It recently provided bilingual translations for many seminal ME/CFS documents including the Consensus Criteria, IACFS/ME Primer, Pediatric Primer, etc.

The ME/CFS Canadian Collaborative Team Conference from May 3-5

Advancing an International Research Agenda to Address ME/CFS Research Priorities: From Basic Research to Clinical Practice

Canadian doctors, researchers, and advocates, then, have played quite a role in ME/CFS — but federal funding for research is sparse, ME/CFS expert doctors are rare and it’s never held a major conference before. (The IACFS/ME held its conference in beautiful Ottawa in 2011.)

For its first try at the conference thing, though, Canada is not starting out small. The March 3-5th conference in Montreal – paid for the Canadian Institutes of Health Research (CIHR) and with support from Canadian and U.S. ME/CFS organizations – is a major ME/CFS conference one hopes will be able to repeat itself, perhaps in the off-years between the IACFS/ME conferences.

The Conference’s goal is a smart and ambitious one – to lay the groundwork for a sustainable Canadian ME/CFS research program by developing an international research agenda that Canada can play a part in. About 250 basic scientists, clinical researchers, physicians and healthcare professionals – as well as patients and policy makers – will be attending.

Ron Davis, who will be speaking several times, welcomed the new international conference stating:

There is an urgent need to get to the bottom of this devastating disease. To do this, we need many
people looking at it from different perspectives and sharing as many ideas as possible so that we are better able to understand ME/CFS at the molecular level. This will impact ME/CFS directly by generating new knowledge as well as awareness about this dreadful disease.

Health professionals will have sessions from May 3rd-5th. The patient day on May 4th will be livestreamed and made available later.

While many Canadian doctors and researchers, including Dr. Alison Bested, Dr. Byron Hyde, Dr. Peter Rowe, Alain Moreau, David Patrick and Patrick McGowan, will present, it truly is an international conference.  Ron Davis, Betsy Keller, Maureen Hanson, Derya Unutmaz, Roland Staud, Nancy Klimas and Lucinda Bateman from the U.S., Louis Nacul and Cara Tomas from the U.K., Carmen Scheibenbogen from Germany, Jonas Berquist from Sweden and Chris Armstrong from Australia, will all be presenting.

Patient Session

The Patient Session on Day 2 (May 4th) will include presentations on:

  • A Short History of ME/CFS – Dr. Byron Hyde
  • The Future of ME/CFS Research in the Omics Era – Ron Davis
  • Modeling and Creating Clinical Trials in GWS and ME/CFS – Dr. Klimas
  • Pathophysiological Mechanisms in ME/CFS – Dr. Alison Bested
  • Objective Diagnoses – Dr. Lucinda Bateman
  • ME/CFS: Could Neuroplasticity Play a Role? – Dr. Eleanor Stein
  • The NIH and the Future of ME/CFS – Vicky Whittemore
  • The Need for Open Collaboration – Linda Tannenbaum
  • ME/CFS Research Landscape in Canada: How Can Science/Innovation Address Unmet Needs? – Margaret Parlor, President of the National ME/FM Action Network, Ottawa
  • Is Heart Rate a Valid Exertional Index in ME/CFS? – Betsy Keller
  • The Alberta Healthy Living Program: The Role of ME/CFS Education – Eleanor Stein, MD, FRCP(C), Calgary, Canada; Judy-Anne Wilson, representative of Edmonton ME Society; Alison Rae, Board Chair and CEO, Action CIND.
  • Medication and ME – Kevin Mejo, BPharm
  • Nutrition and ME – Valérie Marcil, Ph.D., DtP
  • Genetics and ME – Alexis Goth, M.D., CCFP(C)
  • The Biobank Experience in Australia – Chris Armstrong.

Plus, an Unrest screening will occur at the conference location on Thursday night @ 7pm with a follow-up panel discussion by Nancy Klimas, Vicky Whiittemore and Scott Simpson. I will be moderating.

The Conference will take place at the CHU Sainte-Justine Hospital (Amphithéâtres 125 et 250, bloc 11), 3175 Chemin de la Côte-Sainte-Catherine, Montréal, Québec, Canada, H3T 1C5.

 

 

 

 

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