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Protomag article: "Energy Crisis" (17 June 2019)

Discussion in 'General ME/CFS news' started by Ravn, Jun 20, 2019.

  1. Ravn

    Ravn Senior Member (Voting Rights)

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    Location:
    Aotearoa New Zealand
    Story of a patient leading into a general overview of research by Systrom, Oaklander, Elzakker, Montoya and Younger.

    Protomag appears to be an online magazine of Massachusetts General Hospital.

    Full story here: http://protomag.com/articles/energy-crisis-0
     
  2. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    Messages:
    3,664
    Thank you @Ravn for this article.


    Maybe I missed David Systrom's study of pwME funded via Solve ME/CFS. I've looked for it, but couldn't locate it. Is the phase 3 trial referred to THE trial in question, or is there another one. I thought the meaning of a "phase" trial is drug treatment/testing.

    Do you know if Dr. Systrom's study of pwME funded by the Solve ME/CFS Initiative has been published?

    Thank you in advance!

    ETA: My understanding was, this study was not a drug trial.
     
    Last edited: Jun 20, 2019
  3. InitialConditions

    InitialConditions Senior Member (Voting Rights)

    Messages:
    1,580
    Location:
    North-West England
    this is a good article and should be shared / referenced as needed.
     
  4. Andy

    Andy Committee Member

    Messages:
    21,808
    Location:
    Hampshire, UK
    This might provide some answers, https://www.s4me.info/threads/dr-david-m-systrom-at-bwh-has-evidence-of-sfpn-in-some-patients.4855/
     
    Hutan, alktipping, Forbin and 6 others like this.
  5. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Andy and rvallee like this.
  6. rvallee

    rvallee Senior Member (Voting Rights)

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    This is a good article. Nothing we didn't already know but a good summary of where some current research efforts are heading.
     
    alktipping, Forbin, Barry and 3 others like this.
  7. Barry

    Barry Senior Member (Voting Rights)

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    [my bold]

    This really should be the sinking of PACE and all who sail in her.
     
  8. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
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    Location:
    Canada
    Cats sleep nearly 20h a day. You need to be nearly entirely bedbound and immobile to get to a level that qualifies as genuine deconditioning. Only 25% of ME patients even qualify as housebound or worse. The hypothesis was always flawed based on what we know of the disease. Even PACE literally included the fact that participants were reasonably active, which they did only to justify dropping off actimetry, but nevertheless it's there in plain language. This never stopped them from arguing it and for people who should know better to accept such a dishonest argument as valid, let alone convincing.

    There are otherwise perfectly healthy people who are less active than I am, which they do entirely by choice. It's completely ridiculous that such an obviously broken argument can still be argued. The suspension of disbelief is literally killing people.
     
  9. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    Messages:
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    A physician told me that my walking about 30 minutes per day (which I try to do as often as I can) is a lot more than a lot of people do.

    If the deconditioning theory held, others who do way less activity than me should have ME, and I shouldn't!
     
    Little Bluestem likes this.

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