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USA: National Institutes of Health (NIH) intramural ME/CFS study

Discussion in 'ME/CFS research news' started by Simon M, Mar 15, 2018.

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  1. MErmaid

    MErmaid Guest

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    The ME community does not have a shortage of critics! But we do have a shortage of ME advocates who are public figures, and despite being ill, do their best to make positive changes!

    I feel your posts are seeming more “off topic” to me, and deserve their own thread.
     
    B_V likes this.
  2. B_V

    B_V Established Member (Voting Rights)

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    PACE was a trial of talk therapy and exercise.

    The intramural NIH study is a deep biological investigation.

    What's the comparison? Some people like to throw bombs with dumb hashtags and are still living in 1986. They also haven't spent time at NIH in the study. So, yes, a small faction of patients tried to derail the NIH study. Instead they're getting a deep biological investigation of PEM that was designed with input from patients. That's the last I'll say because I'm not interested in engaging with such a negative crowd in rehashing a debate that happened two years ago.
     
    Sanna, Never Give Up, Aroa and 5 others like this.
  3. Trish

    Trish Moderator Staff Member

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    Thank you for your patience, B_V. I think the study looks excellent and very exciting. It makes sense that a study involving extensive testing including exercise tests can't involve the severely affected.

    Any findings that lead to useful blood or other tests can then potentially be tested to see whether they apply to people with longer duration illness and the severely affected.

    It does seem a pity that people are rehashing old worries which have been effectively shown to be incorrect. I hope this doesn't put people off applying to take part.
     
    Indigophoton, B_V, ahimsa and 2 others like this.
  4. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    @B_V

    Please don't shoot the messenger.
    I'm only reminding you of what is out there. I am not writing about 1986 but 2015.
    "Negative crowd?"( BV) I am alone in bringing this to your notice as a response to the question you posed.
     
    mango and duncan like this.
  5. Ron

    Ron Established Member (Voting Rights)

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    @Binkie4
    If you have any legitimate questions you can email Dr. Nath at: avindra.nath@nih.gov
    I initially had questions that he graciously answered and in so doing availed any concerns I had about the study
    and convinced me of his dedication to helping find us some answers. Were fortunate to have him heading this study up in my opinion.

    Edit to add a thanks to those taking part in this study.
     
    Indigophoton, B_V and Binkie4 like this.
  6. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    @Trish

    "It does seem a pity that people are rehashing old worries which have beeneffectively shown to be incorrect"

    (Apologies for not being in yellow)



    Please do you have a link?
     
    Last edited: Mar 23, 2018
  7. duncan

    duncan Senior Member (Voting Rights)

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    I am puzzled by why pwME who may have legitimate questions or even misgivings should be discouraged from expressing those. This is a forum, after all.

    What if anyone individual espousing support for - and even participating in - an endeavor is wrong?

    If he/she is right, good.

    The discussion is part of the journey.
     
    sea, mango and Binkie4 like this.
  8. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Great expression " the discussion is part of the journey". I thought that is what this forum is about. Thanks @duncan .
     
    duncan likes this.
  9. duncan

    duncan Senior Member (Voting Rights)

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    I think the study has some exciting elements, and other that might be interpreted as downright counter-intuitive, if not unnerving.

    I have no reason to believe this observation is inclusively accurate, as much as I respect and admire @Trish.

    Hopefully, just more informed. As advocates, I would think we should all agree on being more informed is better than less.
     
    Binkie4 likes this.
  10. B_V

    B_V Established Member (Voting Rights)

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    In 2015 and 2016, the group ME Advocacy expressed their misgivings by making a concerted effort to stop the NIH study before it began. They circulated a petition calling for its end and took other actions. Vicky Whittemore, who has nothing to do with the intramural study, took the brunt of a lot of the negativity. (She is involved exclusively with the extramural ME/CFS funding and the inter-institute ME/CFS working group and she is a very important ally for patients inside NIH.) The ME Advocacy people compared the study to PACE, which displays a distinct lack of critical thinking skills. They also spread misinformation on twitter and Phoenix Rising, claiming the study was about non-specific fatigue using Fukuda criteria. This effort was an extremely poor display of the worst side of the ME community. Fortunately, their misguided and poorly-informed attempts were unsuccessful and an important study is underway.

    The NIH has made some missteps with the study, most of them in the realm of communications. But they've learned a lot and they explicitly involved patients in the design of the study (which is good). If people want to be suspicious of the brick walls of NIH because of the ugly history of neglect, then they are free to do so. If they decide to focus their anger on Brian Walitt for things he's said, then they are free to do that. But if people aren't willing to fully inform themselves by looking at the study protocol and the other information that is out there, then they should probably try to learn a little more.

    I'd also encourage anyone who has had correspondence with Nath or Walitt to post those messages so everyone can benefit from the exchanges.
     
    Sanna, Aroa, ahimsa and 4 others like this.
  11. duncan

    duncan Senior Member (Voting Rights)

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    This is one history, certainly.

    I am worried about its telling, not to mention bemused and unsure of its implications when taken in context with the early release of disease characterization.

    The functional disorder control was only one issue.

    Revisionist history can be a dicey thing.

    After all these years, maybe we need to be careful.
     
    Last edited: Mar 24, 2018
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  12. duncan

    duncan Senior Member (Voting Rights)

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    I've heard NIH tales that aren't as sweet, although they are not directly related to ME/CFS.

    Having said that, there are some tests I would embrace, some I would not, and if capable, some researchers I would decline, some I would prefer.

    But I am only a patient who is unsure and who has questions.
     
    Last edited: Mar 24, 2018
    Binkie4 likes this.
  13. Trish

    Trish Moderator Staff Member

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    i think @B_V has effectively answered this, as well as Nath and others.

    I don't have any insider knowledge other than what I have read and heard on forums. I agree there was understandable disquiet in the past from many pwme because of Wallitt's involvement, but I believe @B_V's account of his experience of taking part in the study.

    With so many biomedical tests being done so thoroughly by so many top researchers, I can't see how the study can possibly be compared with PACE in any way. I would hate misinformation to put off possible participants.
     
    Sanna, Webdog, B_V and 2 others like this.
  14. WillowJ

    WillowJ Senior Member (Voting Rights)

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    Maybe they can do a group of longer patients later? If things are that much different, possibly treatments could be quite different.

    I guess they didn’t want to pack everything into this one study to publish faster (or not so slowly anyway)?
     
    Allele likes this.
  15. WillowJ

    WillowJ Senior Member (Voting Rights)

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    That’s fascinating and encouraging, and thank you for sharing your reassuring thoughts.

    I can’t apply as 1) sick too long 2) too ill to travel 3) too ill to recover from exercise test and 4) even too ill to have so much interaction over several days, but it does sound very hopeful that the results will be interesting.
     
    Aroa, B_V, ahimsa and 1 other person like this.
  16. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    I have emailed Dr. Nath and Brian Wallitt and both replied to my questions and were helpful. Dr. Nath didn't answer my most recent question about what the exact numbers are now in phase 2 but Brian has answered that here. I so wish the study wasn't so slow....my fear is not living to see the benefits but I have no doubt that they will uncover so much important info and answers. I think Dr.Nath is very approachable, down to earth and genuine.
    As for the NIH, they are not investing enough in ME by a long shot. I am a severe patient myself but not entirely bed ridden. A sense of urgency is desperately needed but it ain't coming from the NIH as we all know. So I have no rose tinted specs on as my life is on the line.
     
    Last edited: Mar 24, 2018
    ukxmrv, Webdog, WillowJ and 9 others like this.
  17. B_V

    B_V Established Member (Voting Rights)

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    For the research nerds, here's a shot of the amount of bloodwork they did post-exercise challenge. It was a lot but thankfully the same IV worked for most of it. :speechless:
     

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  18. Solstice

    Solstice Senior Member (Voting Rights)

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    Damn, I'd be looking like a ghoul if they'd taken that much from me.
     
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  19. ahimsa

    ahimsa Senior Member (Voting Rights)

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    Whoa! Considering that some studies have shown low blood volume, how did you have any blood left in you after all that? ;)

    But seriously, thanks for sharing the photo! :)
     
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  20. Frogger

    Frogger Senior Member (Voting Rights)

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    I am hopeful the study will bring a greater understanding of the invisible elephant in the room.
    [​IMG]
    We know there is an elephant in there, I think I saw his trunk move.
     
    Last edited: Mar 29, 2018
    Joh, Aroa and Trish like this.
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