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Article: Canada - After long-awaited recognition, research begins in earnest around chronic fatigue | CBC News Oct 2019

Discussion in 'BioMedical ME/CFS News' started by Sly Saint, Oct 23, 2019.

  1. Ravn

    Ravn Senior Member (Voting Rights)

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    Can you recall the name of the programme? Is it one that can be listened to on demand?

    I find it impossible to get any healthy people to watch or listen to anything about ME on overseas sites. But some of them will listen if only it's on RNZ, so would be good to have a link. I searched the RNZ site but couldn't find anything.
     
    DokaGirl, ScottTriGuy and Hutan like this.
  2. Hutan

    Hutan Moderator Staff Member

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    Chezboo, DokaGirl, Ravn and 2 others like this.
  3. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    About strategy for change.

    @ScottTriGuy is right. Years of work for "overnight" success.

    A huge thank you again to all who brought this project home!


    The strategy is of course multi-layered; many groups and individuals have worked on this for decades.

    Some factors influencing change include critical mass, open minds, and timing.


    Critical mass:

    1) numbers effected, evidence, professionals (clinicians, researchers) wanting info/change, groups and individuals lobbying over the years; keeping awareness of the issue going

    2) Thanks to work by the ME/FM Action Network we have compelling data to present to decision makers. https://www.mefmaction.com/docs/CCHS_Stats_2014.pdf

    3) Two virtual protests sending thousands of emails in a concerted effort from all across Canada in a timed response on a set day to various decision makers (with pre-planned messages for those who wanted them)

    4) New groups established including Millions Missing Canada and Action CIND - taking up the challenge; along with collaboration among these groups

    5) the US government response - even though funding is still woefully inadequate, the messages are more positive

    6) Awareness and concern by decision makers - in this country, some in the Canadian Institutes of Health Research (CIHR, a branch of Health Canada) aware of ME as a biomedical disease

    (groups and individuals lobbied the CIHR, and Health Canada officials)




    Open minds:

    Individuals in power with open minds, perhaps having been lobbied by their constituents - this second one should not be underestimated; I learned this can be quite effective.


    Timing:

    Election pending; Canada just had a federal election on October 21 - "we count what we care about"; 580,000 Canadians with ME is an impressive number.

    It should be said though, that the numbers effected and all the other factors have not pushed this home until now - we've had many other elections, where nothing has been gained for pwME.


    Decades upon decades and thousands of person hours put into background work, with an excellent team, to finally get this done.


    I found it surprising; you never know where your help is going to come from. Less progressive politicians may be surprisingly open to the issue; others of a different stripe may not.

    Persistence and providing good data help tremendously with our representatives' jobs in putting our message forward.

    I know I've missed lots of the strategy - perhaps others have points about this?


    It is beyond ironic though, that this tremendous work has to be done by people who are so very ill.

    ETA: Many in other countries including the UK, have spent decades upon decades and thousands of person hours doing the same work. Who knows what is the final tipping point? Each country has its own situation. I hope positive change comes soon for everyone!
     
    Last edited: Oct 31, 2019
    brf, Michelle, Amw66 and 5 others like this.
  4. Gigi300

    Gigi300 Established Member

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    Location:
    Montréal, Canada
    (I'M a french, it's the traduction google) https://mecfsresearchreview.me/2019...out-me/?subscribe=success#blog_subscription-3
    On research in Canada, as you said earlier, it was Dr. Alain Moreau who received the 1.5 million grant for 5 years (that's very little) to establish a Canadian research network on the ME. He works at the CHU (Center hospitalier universitaire) of Ste-Justine Hospital, Montreal, (QC) Canada.
    The article cited here is that during the grant granted to his team.
    And to see on which study Dr. Moreau is working, here is a video on the conference he presented at an EM symposium last September at the Open Medicine Foundation.
     
    Andy likes this.

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