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Canadian Federal Health Minister to make announcement regarding ME, August 22

Discussion in 'General ME/CFS News' started by DokaGirl, Aug 21, 2019.

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  1. Barry

    Barry Senior Member (Voting Rights)

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    This is pretty much the same as I've said before to people regarding my wife. To the DWP, ambulance crew, and others. It's a description that helps give the uninformed a better insight into just how catastrophic the loss of energy is. And that whereas the marathon runner will recover pretty speedily, my wife will likely hit it several times a day, or simply be stuck in that state for ages. And if I'm feeling slightly bitter about it, I suggest they ponder how they might cope with that situation.

    ETA: And of course for those with severe ME, they are more or less permanently in this state, and some worse.
     
    Last edited: Aug 23, 2019
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  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Dr. Moreau said: "There is this lack of recovery. In fact, when we look at certain biomarkers, we see that [...] patients have the same markers as an athlete who has just run a marathon. It's as if their system is coming quickly to the ceiling, all the time, so the slightest effort becomes insurmountable."

    I wonder what he is referring to? Is he talking about lactate?
     
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  3. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    These were the powerful words from Karim Khan, Scientific Director of the CIHR Institute of Musculoskeletal Health & Arthritis (IMHA). I've skipped the introduction where he thanks people. He is called on the stage in minute 24 of this video.

    "Please permit me 20 seconds to speak as an MD with 25 years of clinical experience, about myalgic encephalomyelitis. Myalgic encephalomyelitis is real. Myalgic encephalomyelitis is often devastating, far too often devastating. And so as clinicians, I respectfully suggest to my clinician colleagues that we make a pledge to take the insult out of this injury. Let’s remove the insult from this injury, myalgic encephalomyelitis, by validating the patients’ experiences and acknowledging, being honest, how little we know about the treatment for this condition. We don’t have to feel awkward about that. Validating is one thing, having lack of knowledge is another and it’s ok to say, I don’t know how to treat this very well, but I validate your feelings.

    [Applause]

    "And so you can see that gap between validating the reality of patients’ lives and having solutions, needs research and that’s why we are here today. And this network that partners with the NIH and other countries in the world, but specifically there’s the opportunity for Canada to be one receptor in a 4 centre American network with Stanford and Cornell, we are now part of the world leaders to try help our patients.

    "With that, I’ll say merci to dokter Moreau [translated from French] for your passion and commitment to improve human health."​
     
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  4. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    quoting from a Canadian newspaper #71

    https://translate.google.com/translate?hl=en&sl=auto&tl=en&u=https://www.lapresse.ca/actualites/sante/201908/22/01-5238257-un-reseau-national-pour-letude-de-lencephalomyelite-myalgique.php

    Original: https://www.lapresse.ca/actualites/...our-letude-de-lencephalomyelite-myalgique.php

    “Myalgic encephalomyelitis is characterized in adults by unexplained fatigue of more than six months, joint and muscular pains, headaches, pressure drops when getting up and poor quality sleep. It is a "debilitating disease" that affects about 60% of women and occurs in adults between the ages of 30 and 40, said Dr. Moreau.“

    Should it read 60% of patients are women, not 60% of women have the illness? Don’t think it’s the translation. @rvallee
     
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  5. Mij

    Mij Senior Member (Voting Rights)

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    @Jonathan Edwards I'm not certain what he's referring to, but he did a study that found a 'molecular signature' high in homocysteine in his severely affected patients.

    I've read that endurance exercise induces an increase in homocysteine depending on intensity? Will have to look it up later.
     
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  6. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    Spread over 5 years.

    When we were getting ready for a group photo, Sabrina was organizing people and asked the Minister to move a step to the left, the Minister turned to me and said 'See, I can take orders sometimes."

    I said "Well then, I order you put up $10M in funding for ME next year!"

    But much hinges on the federal election in a few months. If the Liberals get back in, we can continue to build / working our relationships with the Minister and her policy advisors. If the Conservatives get in, they are fiscal and social conservatives and will not likely want to increase financial support of any initiatives originated by the Liberals, so our chances of building fruitful (ie more funding) relationships plummets.
     
  7. Denise

    Denise Senior Member (Voting Rights)

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    Thanks.
     
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  8. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    @ScottTriGuy

    Thank you very much again for all your work, and your colleagues' work on this wonderful announcement. Yes, the funds are not large, but the messages were extremely important. I really hope the funds catch up to the messages. I understand the forum policy re discussion of politics, however, it is tragic party politics appear to play a role in whether ME is recognized and funded. To echo your concern re the possible change in government, this would quite possibly be a step back for pwME from yesterday's messages and funding.
     
  9. Barry

    Barry Senior Member (Voting Rights)

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    Excellent :D.
     
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  10. rvallee

    rvallee Senior Member (Voting Rights)

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    I like this collaborative approach! Really the key to any progress.

    Thank you for the insights into this process and for all your hard work, Scott.

    And definitely, ICanCME is a kickass name.
     
  11. Simon M

    Simon M Senior Member (Voting Rights)

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    I’ve shared the MillionsMissing Canada FB post about this on my Facebook page, and included a commentary. I would be hugely grateful to anyone who can check that I have the details right. I’ve tried to include some of the amazing things shared on this thread. Ideally, I’d write a blog, but I’m short of energy.

    Full text of my post below for convenience
     
    Last edited: Aug 23, 2019
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  12. Daisybell

    Daisybell Moderator Staff Member

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    I really like that phrase ‘ effort is insurmountable’.
     
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  13. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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  14. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    “The Ontario government commissioned a working group to evaluate the impact of ME, fibromyalgia and MCAS. It released a report last year stating bluntly that the scope and gravity of the situation was undeniable. No sure if it had any role, but it was the largest evaluation of its kind in Canada.“

    @rvallee #67

    Am interested that MCAS has been included alongside ME and fibromyalgia. Do we have a link to the Ontario government’s working group report from last year?
     
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  15. TigerLilea

    TigerLilea Senior Member (Voting Rights)

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    I don't know anything about the report from the Ontario Gov't, however, last June the people of Ontario voted in Doug Ford as the new Premier, and since he has been in office, he has been cutting back Provincial funding for education, health, seniors, municipal funding, etc. so I can't see this present gov't being interested in funding anything ME, FM, or MCAS related. :(
     
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  16. Milo

    Milo Senior Member (Voting Rights)

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    It is not MCAS specifically, it is environmental sensitivity, hence they have rebranded ME, FM and MCS as environmental illnesses which is not accurate and stigmatizes further.
     
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  17. Ravn

    Ravn Senior Member (Voting Rights)

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    Didn't Moreau in one of his talks about miRNA profiles mention that ME patients looked very similar to overtrained athletes? Not sure of my memory though and can't find the talk right now to confirm (or otherwise). Does anyone have a better memory and can recall?
     
  18. Ravn

    Ravn Senior Member (Voting Rights)

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    It's not the translation. The original French is muddled. Presumably the journalist got confused or forgot to proofread.
     
  19. Andy

    Andy Committee Member & Outreach

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    https://mhealthintelligence.com/new...art-clothing-help-in-chronic-fatigue-research
     
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  20. Andy

    Andy Committee Member & Outreach

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