Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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Discouraging News for Canadian ME Patients

Discussion in 'General ME/CFS News' started by Old Bones, Aug 25, 2016.

  1. Old Bones

    Old Bones Senior Member

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    Hi All,

    I've been taking a break from the forum while preparing for a family wedding -- a daunting task. But, I just couldn't help but report the following news from Margaret Parlor, President of the National ME/FM Action Network. Her email contained the following text:

    "Several months ago, the Canadian Institutes of Health Research offered a “catalyst grant” to set up a research network for ME/CFS. The National ME/FM Action Network was part of a team that made a grant application.

    We have just received word that our application was denied. You can read the documentation here: It provides interesting quotes like: 'there is no evidence that CFS is a disease', 'psychosocial factors are strongly associated with the development of CFS' and 'research focus on biomarkers is likely to provide limited additional value'."
     
    Izola, cfs6691, taniaaust1 and 17 others like this.
  2. Gingergrrl

    Gingergrrl Senior Member

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    I was worried about you when you disappeared and glad to know that you are okay (and hoping the wedding goes smoothly and I'm sure it will be beautiful)!

    That sucks about the Canadian grant being denied along with the sentences you quoted. I can't bear to read the whole thing or I will get too annoyed.
     
    cfs6691, taniaaust1, ahmo and 3 others like this.
  3. halcyon

    halcyon Senior Member

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    Wow. What an extremely inflammatory document. I don't speak french, so it's a little unclear, is Natalie Gendron the person that authored this reply or someone else?
     
    Hutan likes this.
  4. Old Bones

    Old Bones Senior Member

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    @Gingergrrl It's nice to know I've been missed. Thanks. Considering what happens in our household (or more accurately, what doesn't happen) to accommodate my health challenges, preparing for out-of-town guests is a major undertaking. But, they are elderly (even more so than me!), and very dear relatives. Their attendance at the wedding is important to us, and without a place to stay, they wouldn't be coming. So, I've given up everything that doesn't involve slowing getting ready, hoping desperately that I don't "poop out" until after the event. But, all eyes will be on the beautiful bride, so if I'm totally "bagged", it probably won't be noticed. At least, that's what I keep telling myself. I expect to be back participating on PR sometime in September.
     
    sarah darwins, Mel9, Effi and 5 others like this.
  5. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

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    7/27 of the references (26%) cited in the response come from Wessely, Sharpe or Chalder. And I'm not even familiar with the other BPS proponents, so the total percentage BPS representation would be much higher. Not a balanced response.
     
  6. TigerLilea

    TigerLilea Senior Member

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    Vancouver, British Columbia
    Most of the references they used date back to the 1990s and early 2000s. :bang-head:
     
  7. medfeb

    medfeb Senior Member

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    Wow. Was Shorter one of the reviewers?
     
    joeblow604, Sean, Valentijn and 4 others like this.
  8. Justin30

    Justin30 Senior Member

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    400k people sick....no grants...outdated research...pretty sad

    Maybe we can hope it went to other researchers in Canada
     
    shannah, ScottTriGuy and Groggy Doggy like this.
  9. Justin30

    Justin30 Senior Member

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    Hmmm just another thing didnt Canada Create the CCC Criteria used by the NIH and lead to the development of the ICC Criteria....???:thumbdown:

    Well why do they DX the disease in Canada then?

    Why are they not helping being part of the solution?

    This is beyond me i think i need a PR break...
     
    TigerLilea, *GG* and slysaint like this.
  10. Justin30

    Justin30 Senior Member

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    This needs to be addressed somehow by an ME organization and possibly with some help from a global group such as MEAction.
     
    Izola, shannah, meadowlark and 8 others like this.
  11. Groggy Doggy

    Groggy Doggy Senior Member

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    Its just so unfair, sorry. :(
     
    Sean likes this.
  12. Justin30

    Justin30 Senior Member

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    Its just so inhumane really.....unjust....cruel....sad.....inexcusable....
     
    shannah, perrier, TigerLilea and 7 others like this.
  13. Justin30

    Justin30 Senior Member

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    Do you have the full document?
     
    meadowlark likes this.
  14. Groggy Doggy

    Groggy Doggy Senior Member

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    Yes, ALL of those things!! :bang-head:
     
  15. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

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    The link to the full doc is the word "here" in the OP:
    You can read the documentation here:
     
    Izola, meadowlark and waiting like this.
  16. Gingergrrl

    Gingergrrl Senior Member

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    I tried to read it after all and as I suspected, I got too annoyed and had to stop.

    Am really confused like Justin said above... Didn't the CCC Criteria come out of Canada? Why are they going backwards in time vs. forwards?

    Do they still hold the CCC to be an official medical document? What the hell?!!!
     
  17. Kati

    Kati Patient in training

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    Sorry to worsen the party but CIHR awarded the following grant for a little less than 600,000$ for a rehab project.

    Canadian MSK Rehab Research Network
    Principal Investigator(s):
    Macdermid, Joy C; Lyddiatt, Anne L; Astephen Wilson, Janie L; Birmingham, Trevor B; Robinovitch, Stephen N; Roy, Jean-Sébastien
    Co-Investigators:
    Feldman, Fabio; Ashe, Maureen C; Beaton, Dorcas E; Beaupre, Lauren; Begon, Mickael; Bouyer, Laurent J; Carlesso, Lisa; Choinière, Manon; Cote, Julie; Dahan-Oliel, Noemi; Deluzio, Kevin J; Desmeules, François; Dionne, Clermont; Emery, Carolyn A; Ferber, Reed; Ferreira, Louis M; Fitzsimmons, Deborah A; French, Simon D; Gagnon, Dany; Giangregorio, Lora Marie; Gignac, Monique A; Gross, Anita R; Gross, Douglas P; Hayden, Jill A; Hill, Wendy; Hunt, Michael A; Kozey, Cheryl L; Leonard, Guillaume M; Maly, Monica R; Marshall, Deborah A; Marsh, Jacquelyn; Mercier, Catherine; Perreault, Kadija; Petrella, Robert J; Piché, Mathieu; Prado, Carla M; Richardson, Julie A; Robbins, Shawn M; Ronsky, Janet L; Rouleau, Dominique; Rutherford, Derek J; Sinden, Kathryn E; Stock, Susan; Teeter, Matthew G; Tousignant-Laflamme, Yannick; Trejos, Ana Luisa; Urquhart, Nathan A; Walton, David M; Weiler, Hope A; Whittaker, Jacqueline L; Wideman, Timothy H; Wohl, Gregory R; Woodhouse, Linda J
    Supervisors:
    Institution Paid: University of Western Ontario

    Research Institution: University of Western Ontario

    Department: Physical Therapy

    Program: Catalyst Grant: Musculoskeletal Rehab and ME/CFS Network Grant - MR

    Competition(Year/Month): 201605

    Assigned Peer Review Committee: CFS Catalyst Grant: Musculoskeletal Rehab and ME/Chronic Fatigue Syndrome

    Primary Institute: Musculoskeletal Health and Arthritis

    Primary Theme: Clinical

    Term (Yrs/Mths): 3 yrs 0 mth
    CIHR Contribution:

    Contributors Amount: $593600 EQuipment: $6400
    External Funding Partner(s):

    Partner Name Amount Equipment

    External Applicant Partner(s):

    Partner Name Amount Equipment

    External In-Kind Partner(s):

    Partner Name

    Keywords: KNOWLEGE TRANSLATION; MOBILITY; MUSCULOSKELETAL HEALTH; NATIONAL PLATFORMS; PAIN; RANDOMIZED CONTROLLED TRIALS; REHABILITATION; TECHNOLOGY; TRANSDISCIPLINARY; WORK

    Abstract: Problems with bones, joints, muscles, and the nerves that help people move and interact with the world affect many Canadians. Problems like arthritis, osteoporosis, and injuries cause pain, lack of mobility, and interfere with work and other life activities. Disorders affecting the musculoskeletal system are the largest cause of disability in Canada. Rehabilitation is an approach to help optimize function throughout the lifespan and includes management of health conditions, and prevention of reoccurrences or future problems. To address the large burden of pain and disability, it is important to have a strong research base that can define the best approach to rehabilitation. The aging population and changing healthcare system place urgency on the need for rehabilitation researchers to work together to meet these challenges. This network will bring together researchers from different disciplines and people affected by these problems from across Canada to focus on fundamental problems of chronic pain, mobility limitations, and their impacts on work. The network will establish key research priorities, fund pilot grants and trainee awards that will help people work together on innovative solutions, create platforms so that researchers can share data nationally, and conduct studies at multiple centres. The network will look at innovative new ways to deliver rehab using technology and new discoveries. The research will consider the risk from injury or cumulative loads that occur throughout the lifespan. The research will engage experienced and junior researchers, patients, organizations, and trainees to work together collaboratively. The network is expected to provide a clear vision of what is needed and pilot projects addressing important research questions in a more collaborative way. Also, the network will attract larger funding and more extensive partnerships. The ultimate results will be high-quality research that will have an impact on the health of Canadians.
     
  18. Justin30

    Justin30 Senior Member

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    Does anyone have the actual request to the Canadian Government? The one from ME/FM Canada group?
     
  19. Justin30

    Justin30 Senior Member

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    This has nothing to do with ME...
     
    Dolphin, taniaaust1, shannah and 3 others like this.
  20. Hutan

    Hutan Senior Member

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    It's beyond depressing.

    Could we offer a trip to the IACFSME Conference to some influential person in Canadian health administration?
     

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