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The NIH study needs patients (from Brian Vastag)

Discussion in 'Recruitment into current ME/CFS research studies' started by Simon M, Mar 15, 2018.

  1. Dakota15

    Dakota15 Established Member

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    Thought this would be a good thread to bump after the Teleconference Call with the NIH last Wednesday (7/18)

    Dr. Nath stated their need for eligible applicants still
     
  2. Dolphin

    Dolphin Senior Member (Voting Rights)

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    rvallee, John Mac, mango and 3 others like this.
  3. Andy

    Andy Committee Member & Outreach

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    https://solvecfs.org/me-cfs-study-participants-needed-at-nih/
     
    andypants and Hutan like this.
  4. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    Good luck to that...... it's as slow as molasses. Certainly not counting on them for answers.
     
    Binkie4 likes this.
  5. Andy

    Andy Committee Member & Outreach

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    One 5-10 day stay and one 10 day stay in hospital, quite honestly I'm not surprised that not many people are keen and/or able to sign up for that.
     
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  6. andypants

    andypants Senior Member (Voting Rights)

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    I would have done it if I didn't have to travel across the Atlantic for it, with extensive testing for free and all in one place and the potential for ruling out other conditions I think it would benefit me (in addition to helping the study).

    Having to drive hours to get there would be the biggest barrier for me as more than an hour or two (tops) in a car would destroy me and I think most PwME. The inclusion criteria are also very strict, you don't qualify if your onset was gradual among other things.
     
  7. SallyC

    SallyC Senior Member (Voting Rights)

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    Ditto, I am eligible and if somehow a UK centre was available I would be more than willing to risk the crash to take part but there's no way I'd make it to the US.
     
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  8. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Yes, though just in case anyone missed it, you actually get most/all of your expenses paid plus decent amounts of money. I really hope they get the numbers.
     
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  9. Andy

    Andy Committee Member & Outreach

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    As do I but with the expected time commitment it would obviously mean that anybody still working is highly unlikely to be able to take part. I also think that the requirement that the participants be less than 5 years into their illness will play a huge part in restricting numbers - it may well be for valid medical reasons but how long will it take for the average person to get a diagnosis? Then, if it's less than 5 years, how likely are they to learn of the research and the fact they could take part?

    Given that the online patient community, I would argue, tends to be the longer term affected, do we know what extra efforts the NIH are making to capture newly, or more recently, diagnosed patients?
     
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  10. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I don’t know. But lots of ME/CFS studies can struggle to get the numbers. I try to help when I can e.g. have used boosted ads on Facebook (a contact of mine works for Facebook and lets me use some of her ad money for ME/CFS items). Unfortunately last time I checked, there was no obvious way to do targeted ads for people interested in ME/CFS (there was previously). Anyway I think the ME/CFS community should do what it can to highlight opportunities.
     
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  11. Andy

    Andy Committee Member & Outreach

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    I didn't really mean that question to be aimed at you, though I appreciate it reads that way. I agree that the community should do what I can but I can see why the NIH may well be struggling to recruit. I'll try to remember to put something up on the forum Facebook page soon.
     
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  12. Daisybell

    Daisybell Moderator Staff Member

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    I do wonder if their inclusion criteria are so strict that they are going to end up with a sample that is actually not representative.....
    Most of us have other comorbidities and what if that is actually an important piece of the jigsaw? By studying only people who don’t, might they not end up with the wrong jigsaw?
     
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  13. Dakota15

    Dakota15 Established Member

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    I applied to it (I meet being under the 5 year criteria) but unfortunately after being reviewed for quite some time, was denied. Although it certainly entails a decent amount of commitment, to help research I would have signed up for anything.

    In any event, hope they can get their numbers they are seeking.
     
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  14. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Not able to go through a lot of text now, so could someone please direct me towards the requirements for ME patients they're requiting?

    It is interesting that they'll accept patients from abroad. But only those who have been ill for less than five years? Are there other requirements?
     
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  15. Andy

    Andy Committee Member & Outreach

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    https://mecfs.ctss.nih.gov/

    Also
     
  16. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

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    When I saw that expenses were paid, I was considering applying until I saw the less that 5 years bit. :banghead:
     
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  17. Theo

    Theo Established Member (Voting Rights)

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    I feel like ME/CFS clinicians would be the best people to help recruit for the NIH study since they are the ones who have direct contact with the most patients, and probably a lot of patients who are being newly diagnosed. I wonder if that's being done.
     
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  18. Trish

    Trish Moderator Staff Member

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  19. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  20. Sanna

    Sanna Established Member

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    I am pretty sure Dr. Walitt goes over all of these numbers, including how many did not respond after being invited, in his talk at the ME/CFS conference at the NIH in April 2019. If someone was interested in those exact numbers, you could look up the video recording and Dr. Walitt's talk.
     
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