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1st ME/CFS Canadian Collaborative Conference

Discussion in 'General ME/CFS News' started by strategist, Feb 12, 2018 at 9:21 PM.

  1. strategist

    strategist Senior Member (Voting Rights)

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  2. Trish

    Trish Senior Member (Voting Rights)

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    May 3rd - 5th 2018

     
    Aroa, MEMarge, Barry and 12 others like this.
  3. ScottTriGuy

    ScottTriGuy Established Member (Voting Rights)

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    Patients are only allowed on Day 2:

    Choisissez votre type d'inscription / Choose your registration type: *
    • Médecin / Doctor
    • Chercheur ou Professionnel de la santé / Researcher or health professional
    • Résident ou étudiant / Resident or student
    • Patient (jour 2 seulement) / Patient (Day 2 only)
     
    Barry, brf and Invisible Woman like this.
  4. ScottTriGuy

    ScottTriGuy Established Member (Voting Rights)

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    Patients are not their priority:

    The aim of the conference is to:

    • Provide physicians, clinicians, researchers, and other healthcare professionals with a platform to discuss advances and innovations in the study of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome.
    • Develop, with the help of an international coalition of ME experts, a sustainable ME/CFS research agenda.

     
    Skycloud, Jan, Binkie4 and 2 others like this.
  5. Alvin

    Alvin Senior Member (Voting Rights)

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    I saw that, i wonder why...
    That said anyone planning on going or happen to live in Montreal?
     
  6. Londinium

    Londinium Established Member (Voting Rights)

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    Derya Unutmaz has said on Twitter that he's going, which is a positive sign.
     
    Diwi9, jpcv, MEMarge and 12 others like this.
  7. MsUnderstood

    MsUnderstood Senior Member (Voting Rights)

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    @Perrier I suspect Montreal is not unique within Canada with respect to ME not being covered in medical schools. Due to several medical issues in addition to ME that have developed during the past eight years, I have seen many specialists. Further, my excellent GP and rheumatologist frequently have medical students or recent graduates accompany them to patient appointments. I always seize the opportunity to ask if ME or CFS is/was included in the curriculum at their school. The answer, so far, has been a disappointing “no”.

    A few weeks ago I searched Alberta’s illness codes document to see how ME is classified. I looked under every name and abbreviation I could think of, and when that wasn’t successful scanned every page for a possible link. I found nothing.
     
    MEMarge, Jan, Skycloud and 6 others like this.
  8. Sing

    Sing Established Member (Voting Rights)

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    Well, it is still valuable to bring people up to speed, and it looks like they are aiming on having a crowd. So it’s encouraging. It takes numbers of people to learn and understand something before a paradigm is apt to change. And it’s a good time because the science is strong and research field is hopping. (What would “hopping” be in Québécois?)
     
    Dechi, MEMarge, Jan and 6 others like this.
  9. Chris

    Chris Established Member (Voting Rights)

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    From what I've heard the following can be expected:

    Lucinda Bateman
    Peter Rowe
    Maureen Hanson
    Alison Bested
    Ron Davis
    Patrick McGowan
    Nancy Klimas
    Byron Hyde
    Derya Unutmaz
    Roland Staub
    Eleanor Stein
    Betsy Keller
    Luis Nacul
    Chris Armstrong
    Vicky Whittemore
     
    Diwi9, Lindberg, Dechi and 21 others like this.
  10. Perrier

    Perrier Established Member (Voting Rights)

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    Then I will register immediately.


     
    MEMarge, Sing, Jan and 5 others like this.
  11. ScottTriGuy

    ScottTriGuy Established Member (Voting Rights)

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    Day 3

    A roundtable discussion that will focus on developing a collaborative ME/CFS research agenda that includes clinicians and researchers at the national and international levels.

    No research about ME, without ME patients.

    Its this kind of exclusion that sustains the health care horror for ME patients.
     
    Diwi9, BruceInOz, Mij and 5 others like this.
  12. Perrier

    Perrier Established Member (Voting Rights)

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    Scott, you are right.
    I've just been looking at this more closely, after oooing and ahhhing about who is coming.

    Looks to me like we should be allowed to come on all three days.

    I'm sure the place won't be overcrowded.



    Health care horror is right. WE have had NO help here in Montreal, none! We have had to go to the usa and to Europe.
    And I doubt after this one conference there will be any help here in the city.

    Montreal is a fabulous city to dine in, and it's very Scottish & old French architecture. Nice for the visitors.
     
    Last edited: Feb 13, 2018 at 11:58 AM
  13. Dechi

    Dechi Senior Member (Voting Rights)

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    Yes, I registered tonight. I will be attending.
     
  14. Alvin

    Alvin Senior Member (Voting Rights)

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    I am considering it, but coming from out of town will be very exhausting, plus the cost, not terrible but enough to be an issue.
    I wish they would have no cancellation fee for patients, especially since we would not cancel for no reason but because of the purpose of this conference
     
    Jo Best, Jan, Invisible Woman and 5 others like this.
  15. Dechi

    Dechi Senior Member (Voting Rights)

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    The cost includes breakfast, lunch and breaks, which is worth about 25$, so it’s like paying 25$ for the conference, which is reasonable. But of course if you have to cancel, it’s all lost. And of course accomodations.

    If you decide to come, let me know so we meet and chat.
     
    MEMarge, Jan, Invisible Woman and 2 others like this.
  16. Trish

    Trish Senior Member (Voting Rights)

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    This is normal at Scientific conferences. The IiME conference in London has a 2 day colloquium for researchers to share their current research and learn from each other. If they invited patients to this, it effectively makes it public, so the are then constrained in what they reveal about work in progress. I think it's fine for researchers to have these private discussions - the make great links and collaborations and learn from each other.

    The don't have to put on public talks and specifically invite patients at all if they don't want to - most medical scientific conferences don't, as far as I know.
     
    petrichor, jpcv, MEMarge and 10 others like this.
  17. duncan

    duncan Established Member (Voting Rights)

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    I'm not sure this accomplishes or prevents what the researchers might imagine it does. Moreover, to some it might smack of false peer-reviewed nonsense with a dollop of elitism thrown in for flavor.

    Letting patients in to at least listen to hitherto closed sessions might actually aid in the research process. Those pesky patients can occasionaly bring unique insights to the conversation that mice or other research animals are more reticent about.
     
  18. Jo Best

    Jo Best Established Member (Voting Rights)

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    I'm sure there is nothing to worry about. The sponsors include proactive Canadian patient organisations, and the 3-day format looks as though it's modelled on the highly regarded and successful Invest in ME Research Conference week, which started in 2006 with a public day for everyone, patients, caregivers, scientists, doctors, etc. and has evolved year on year to include a 2-day closed workshop for the researchers to get their heads together, share data and ideas, plan collaborations and so on, as descibed by Trish, and 2018 includes an extra day for early career researchers. Also, looking at the list of researchers, most if not all, have been working together through the IiME Research events over the years and already work in partnership with patients....so it looks as though this Canadian initiative has gone straight for a model of proven success.

    logos partenaires.1517860818.jpg
     
    Keela Too, petrichor, Dechi and 12 others like this.
  19. ScottTriGuy

    ScottTriGuy Established Member (Voting Rights)

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    If this was one of the popular cancer or HIV or another highly funded disease conference, I wouldn't be so concerned about the lack of patient inclusion.

    But given the decades of harm and neglect of people living with ME by our hellth care system, I have little reason / evidence to trust their process for determining a research agenda. In fact, the evidence is plentiful that this conference will lead no where, just as the Canadian conference from 30 years ago went no where.

    Health Canada does not have any more funds set aside for ME research. Once this $70k is used up for this conference, that's it. So some would argue the $70k crumb they threw to the 580,000 Canadians with ME is to placate them and this is just a conference for show, not for future research.

    I'll start trusting the government's process when the government proves it can be trusted, and to do that it must overcome 3 decades of denial and betrayal.

    FWIW, they didn't ask to use the Millions Missing Canada logo as evidenced by using an old version. They have also failed, in spite of repeated requests, to include MMC in email updates. So based on behaviour, they want to appear to have patient endorsement, but in practice they don't involve patients.

    I hate to be a Davey-downer, but the reality is Health Canada fails ME patients at every turn, in every way. I cannot think of a single instance of the government doing right by ME patients - not protecting us from iatrogenic harm, not by funding research, and not be increasing access to treatment.

    Even the $70k crumb for this conference is insulting. Fair and equitable funding would be about $88 million.

    I'm reminded of this Larry Kramer quote: "You treat us like crumbs. You hate us. And sadly, we let you."

    Acquiescing to the status quo is sustaining the problem, not solving it. This is a crucial opportunity for Canadians with ME.

    Will we settle for more of the same, or demand inclusion and change?
     
    Diwi9, Andy, Jan and 8 others like this.
  20. Perrier

    Perrier Established Member (Voting Rights)

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    Scott,
    Your points are all well taken and accurate and true.



     

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