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NIH drop FMD (functional movement disorder) control group from ME/CFS study

Discussion in 'General ME/CFS News' started by Simon, Mar 6, 2016.

  1. Simon

    Simon

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    Thank you, NIH, for listening to patient concerns.


    edit: link should now work

    Hopefully they will retain a study group of 100 and re-allocate those 20 FMD controls slots to other groups (make bigger, or bring in a new control group - I have no more information).
     
    Last edited: Mar 6, 2016
    beaker, lycaena, Webdog and 44 others like this.
  2. Scarecrow

    Scarecrow Annie Gsampel

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    Unexpected news for a Sunday!

    @Simon, do you have another link or can you direct us where to find your post on #MEAction?
     
    Simon and Sasha like this.
  3. shannah

    shannah Senior Member

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    Excellent news!

    Undoubtedly a good decision!
     
    Simon, Mary, Comet and 1 other person like this.
  4. Sasha

    Sasha Fine, thank you

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    :balloons::balloons::balloons::balloons::balloons::balloons::balloons::balloons::balloons::balloons::balloons::balloons::balloons:
     
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  5. Sasha

    Sasha Fine, thank you

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    mango, BellaSC, Mary and 4 others like this.
  6. A.B.

    A.B. Senior Member

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    The NIH fully committing to exploring the biology of ME/CFS is exactly what we want to see.
     
    Ellie_Finesse, justy, mango and 11 others like this.
  7. duncan

    duncan Senior Member

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    A big positive, to be sure.

    Hopefully, this represents just the first good step in resolving the many issues identified by the patient community.
     
    mango, leela, Simon and 5 others like this.
  8. Comet

    Comet I'm Not Imaginary

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  9. Mary

    Mary Senior Member

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    Woo hoo!!! Thanks so much for posting, Simon --- :thumbsup::nerd::sluggish::cat::balloons::)
     
    Simon and Comet like this.
  10. Sean

    Sean Senior Member

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  11. Denise

    Denise Senior Member

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    Thanks for sharing this @Simon.
    I look forward to finding out what other changes NIH is proposing for the study.
     
    mango, Mary, leela and 3 others like this.
  12. John Mac

    John Mac Senior Member

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    Great news. It looks like we are finally being listened to.
     
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  13. Stewart

    Stewart Senior Member

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    Wow. That's a quick about face! It would be *very* interesting to know what's happened in the last few days to bring about this most welcome change.
     
    John Mac and Simon like this.
  14. Simon

    Simon

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    Good, isn't it? Thanks due to those who everyone who raised this issue inc Carol Head at solve ME/CFS and MEAction, but many more too.

    And thanks especially to th NIH for listening. I think this bodes well for the future, though obv a long way to go still.
     
    Last edited: Mar 7, 2016
  15. adreno

    adreno PR activist

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    This is great news. Really glad to hear it. I do think this indicates that the NIH is committed and willing to engage with the patient community.
     
    Dolphin, ballard, Simon and 4 others like this.
  16. Riley

    Riley Senior Member

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    Whoa! I guess they really didn't have a strong scientific basis for including the FMD group.

    I'm curious if they were persuaded by our arguments or if this is to appease the community.

    Either way, great news!
     
    ballard, Simon, Mary and 3 others like this.
  17. leela

    leela Slow But Hopeful

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    Indeed! And I've never seen NIH move so fast on anything M.E. It bodes well.
     
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  18. Ecoclimber

    Ecoclimber Senior Member

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    " At the CDC grand rounds last week, Nath citing the legacy of ACT UP affirmed that, “input from the patients is absolutely critical for any disease that you want to study. They’re the ones who really experience the symptoms and live it.”We heard this from other scientists as well, Lipkin for example. So unless this a ruse, we should advocate for positions that are detrimental toward the ME/CFS community

    So with all of the events of the last few weeks, I like to change the dynamics at this time by stating my appreciation, thanks and applause to all those involved in helping this community.

    Speaking from experience, some do not realize the cost to advocates in terms of their health and we owe a great deal gratitude for their tireless actions on behalf of the ME/CFS community. Advocates had significant impact on the IOM by making sure that proper representations on the panel included experts in the field of ME/CFS. Because of those actions, ME/CFS was diagnosed as a biological illness and in no uncertain terms the IOM report categorized the horrible treatment patients received at the hands of the medical profession.

    The sacrifice and work load was enormous. So few have helped so many. Personally, I thank the work of so many on the CFSAC committe..Jennie Spotila who chronicled the toll on her health, DSM codes, Suzy Chapman, JB in FOIA lawsuit so many to thank. In my small group mostly attorneys focusing on the IOM, we were falling by the wayside left and right with decline in health issues, Ren, Leela, justinrielley to name a few. Mary Dimmock, Llewellyn King, Mary M. Schweitzer, David Tuller, Tom Kindlon, Lady Mar and all the advocates who signed the IOM letter. Too many really to mention, but we owe our progress to them as others take up the torch to carry forward like Sasha, Jen Brea. Other names not mentioned is not a slight just that I haven't direct knowledge of the work. Gratitude and thanks to all of the patients in the PR community who have dedicated time in researching all the articles and have voiced their opinions and objections against the injustices they have observed by fighting for better research.Bob, Simon, Dolphin, Alex3629, Esther.. To the PR staff, for their dedication in trying times and for allowing a place where patients can gather as a community. :thumbsup:

    We still have a job to do in voicing our objections to various researchers that patients feel will be harmful to the current NIH research. The community must still be diligent as the road ahead is still difficult to overcome the paradigm shift to biomedical reductionism.
     
    Last edited: Mar 6, 2016
  19. Skippa

    Skippa Senior Member

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    Great news, glad they decided to overrule whichever Grima Wormtongue convinced them to include it in the first place...
     
  20. Sean

    Sean Senior Member

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    Somebody is being defanged, and for a change it isn't us. :cool:
     
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