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Open Medicine Foundation (OMF)

Discussion in 'News from organisations' started by DokaGirl, Sep 1, 2019.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
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    Location:
    Norway
    The Scientist - A Geneticist's Quest to Understand His Son's Mysterious Disease
    ME/CFS is now Davis’s primary research focus. His leadership has contributed to changes in the field: ME/CFS is now accepted a biological disease, and federal funding has increased. New, talented investigators have joined the hunt for a cure. Davis is not alone in his race to find treatments for his son and millions of others like him.
     
    janice, andypants, leokitten and 15 others like this.
  2. Mij

    Mij Senior Member (Voting Rights)

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    8,204
    I received a letter in the regular mail 2 days ago from the OMF asking for donations, and a photograph taken by Whitney, "Never Forget the Light".
     
  3. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    6,237
    Location:
    Norway
    Al Jazeera A geneticist's biggest challenge: Curing his own son

    Luminaries from all over the world have joined Davis’s research and flew in for the last pre-pandemic CFS Symposium at Stanford in September 2019: Robert Phair, a former Johns Hopkins School of Medicine professor, has seen interrupted metabolism in patients; top surgeon Ron Tompkins established a CFS research collaboration at Harvard University; Maureen Hanson, professor of molecular biology at Cornell University who was motivated to join the efforts by a family member with CFS, has focused her research on the microbiome of patients’ gut and blood; neuroscientist Jonas Bergquist who travelled from Uppsala University, in Sweden, where he started a research centre on ME/CFS.

    Stanford geneticist Mike Snyder summed up what many of them think: “When Ron calls, we come.” They all acknowledge his brilliant mind and work ethic, and complain about the lack of funding to study this complex disease.
     
    andypants, shak8, janice and 21 others like this.
  4. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    1,858
    Good article.

    Abilify I believe.

    Surprised to hear that Whitney only sleeps 2 hours a day. Seems really bad.
     
    Legend, leokitten, Anna H and 4 others like this.
  5. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    5,234
    Interesting.
     
    Legend, MEMarge, Shinygleamy and 3 others like this.
  6. Perrier

    Perrier Senior Member (Voting Rights)

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    Thanks for the article. It was very good. And Janet spoke very well for the article!

    I found the following interesting and very unsettling: "... but Davis is convinced he’s confronting an autoimmune disorder, not unlike MS."
     
    Legend, MEMarge, MeSci and 5 others like this.
  7. Sid

    Sid Senior Member (Voting Rights)

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    1,054
    Oh dearie me.
     
    MEMarge, Michelle and Kitty like this.
  8. Perrier

    Perrier Senior Member (Voting Rights)

    Messages:
    788
    I don't get your drift, but. ....as a parent it is utterly heartbreaking to watch your offspring suffer and likely continue to suffer so horrifically. If this is autoimmune and like MS what does the future auger? Best wishes Madame.
     
    Sid and Shinygleamy like this.
  9. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    is that because of Abilify? Is that a side effect?
     
    Shinygleamy likes this.
  10. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    6,237
    Location:
    Norway
    Good to keep in mind
    https://twitter.com/user/status/1345487507505504264
     
  11. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
    1,858
    Abilify can alter sleep but it sounds like he naturally only sleeps 2 hours per day.
     
    leokitten and lunarainbows like this.
  12. NelliePledge

    NelliePledge Moderator Staff Member

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    Location:
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    MEMarge, MeSci and lunarainbows like this.
  13. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    Re the bit about sleep, they were talking about day-night reversal, so I read it as saying that he only sleeps 2 hours at night, and sleeps the rest during the day.
     
    Anna H and lunarainbows like this.
  14. cfsandmore

    cfsandmore Senior Member (Voting Rights)

    Messages:
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    Location:
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    We could really use a big step forward.
     
  15. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
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    They probably have a biomarker now— my guess!

    Sounds optimistic.

    Maybe they figured out the Abilify tolerance thing as well.
     
    Last edited: Jan 3, 2021
    Legend, Kitty and Shinygleamy like this.
  16. Badpack

    Badpack Established Member (Voting Rights)

    Messages:
    76
    .
     
    Last edited: Jan 7, 2021
    Legend, Anna H, cfsandmore and 4 others like this.
  17. Shinygleamy

    Shinygleamy Senior Member (Voting Rights)

    Messages:
    150
    Love the image of them all together lying on the floor. That's such a big thing for Whitney to be photoed with his family.
    (Tried to paste it into my message but didn't manage it)
     
    Legend, cfsandmore, MEMarge and 2 others like this.
  18. John Mac

    John Mac Senior Member (Voting Rights)

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    905
    Last edited by a moderator: Jan 3, 2021
    janice, Legend, cfsandmore and 3 others like this.
  19. Mij

    Mij Senior Member (Voting Rights)

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    8,204
    How did RD "prove" CFS is real?

    This:
    "Davis had discovered that the processes in each cell that convert food to energy were not working correctly in his son. The scientists had “found scientific proof of ME/CFS,” clearing a major hurdle for a disease that many still today deem imaginary".

    I'm at a loss for words. A consultation with a biochemist told me this in 2001 after I had a panel of tests done.
     
    Sarah94 and cfsandmore like this.
  20. Trish

    Trish Moderator Staff Member

    Messages:
    51,871
    Location:
    UK
    Interesting. Was that test you had researched and published?
     
    cfsandmore and MEMarge like this.

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