Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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NIH Director's Blog Post About ME/CFS

Discussion in 'General ME/CFS News' started by Never Give Up, Mar 21, 2017.

  1. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Francis Collins and Walter Koroshetz have coauthored a blog post on the about ME/CFS.

    https://directorsblog.nih.gov/2017/03/21/moving-toward-answers-in-mecfs/

    They hit a lot of the right buttons.

    They go on to detail what the NIH has been doing recently and what is coming up. They finish with this:

    Sounds good to me!
     
  2. Marco

    Marco Grrrrrrr!

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    Near Cognac, France
    Great stuff!
     
  3. A.B.

    A.B. Senior Member

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    Please leave comments! Even if it's just appreciation for them acknowleding the problem.
     
    Joh, Jan, dangermouse and 4 others like this.
  4. JamBob

    JamBob Senior Member

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    Sounds good - just wish they'd give money to Ron Davis so he can get on with his research.
     
  5. Nielk

    Nielk

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    What they leave out is that it is HHS/NIH/CDC's fault that we are in this pitiful state over 30 years after Lake Tahoe outbreak.

    It is CDC who created faulty criteria and spreads lies and misinformation. It is NIH who has withheld and is continuing to withhold proper funding.

    The steps they are proud to show in this log is pathetic.

    What we need is adoption of proper criteria like the ICC and hundreds of thousands of dollars in yearly funding in order to enable the much needed grand scale studies.

    We should not be satisfied with these crumbs.
     
  6. Mary

    Mary Senior Member

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    I just left a comment; they ask for your name and e-mail address which I provided, but it looks like they post your full name, so it probably would have been better to just use the my first name. Oh well.

    And I did put in a plug for Ron Davis and OMF - my comment is "awaiting moderation", hopefully they will post it. Thanks so much @Never Give Up for posting this!
     
    Joh, Sancar, Jan and 5 others like this.
  7. Aroa

    Aroa

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    Good News !!!

    Now I hope.... they will fund the right people.

    It is paradoxical that patients decisions on donations has little to do with NIH grant decisions.

    Patients give their money to whom they think they will most propably find effective treatments.
     
    Mary and Jan like this.
  8. A.B.

    A.B. Senior Member

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    I hope that Lipkin and Davis can get funding for their big projects.
     
    Izola, Valentijn, Joh and 12 others like this.
  9. Barry53

    Barry53 Senior Member

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    When I posted it preloaded my full name, which I then edited.
     
    Mary and alex3619 like this.
  10. Alvin2

    Alvin2 Senior Member

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    Exactly, too little too late
    They acknowledge reality after decades of denying it, till the point that they will be be unable to spend any money because of the denier in chief in charge.
     
    Izola, Barry53, ballard and 1 other person like this.
  11. Esther12

    Esther12 Senior Member

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    This has to be a positive sign. Some more criticism of what's come before would certainly be appreciated though.
     
    Binkie4, Sean, mango and 4 others like this.
  12. Forbin

    Forbin Senior Member

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    I like Francis Collins a lot and it is heartening to read of his continuing commitment to ME/cfs research. Still, I'm coming up on my 35th anniversary of post-infectious sudden onset, and all that wasted time makes nothing so clear as the fact that we need to now be vigilant about holding the NIH to its commitment to research and solve the biological complexities of ME/cfs.
    Доверяй, но проверяй
    ("Trust, but verify")


     
    Last edited: Mar 22, 2017
  13. adreno

    adreno PR activist

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    A good way for the NIH to say we're sorry, we messed up would be to fund Lipkin and Davis in full NOW.
     
  14. Kati

    Kati Patient in training

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    I wonder if the NIH director is at liberty to fund anything at all these days considering the new administration.
     
    Barry53 likes this.
  15. Alvin2

    Alvin2 Senior Member

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    Thats the point, they admit reality after the ship has sailed, they refused to fund ME/CFS research for decades even misappropriating money that was allocated then admit its real after they can't fund it. It could even be intentional.
     
  16. Snow Leopard

    Snow Leopard Hibernating

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    Yes they should have increased funding long ago, but it also suggests there has finally been a change in attitude - the scientific consensus does not suggest that psychological research and treatments are the answer.
     
    anniekim, slysaint, Cheshire and 11 others like this.
  17. A.B.

    A.B. Senior Member

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    PACE has been exposed as fraud just at the right time as well.
     
  18. Barry53

    Barry53 Senior Member

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    Still a good sign I suspect. Probably going to start seeing all manner of people and organisations back peddling into backside-covering mode, with varying degrees of success, deserved or otherwise. But it usually means they suddenly start deserting the ones who clearly have no chance of dissociating themselves from the nasty smell - in this case the PACE authors.
     
  19. Nielk

    Nielk

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    Check out the link provided for Medline Plus at the bottom of the blog.

    Links:

    Chronic Fatigue Syndrome (Medline Plus, National Library of Medicine/NIH)
     
  20. lilpink

    lilpink Senior Member

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    Grim. I'm not going to waste the energy it takes getting excited until it's worth wasting that energy to get excited.
     
    Alvin2 likes this.

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