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Do the poll! Are the NIH/CDC going to use the right definition of PEM in all their future research? Deadline 24 January

Discussion in 'General ME/CFS News' started by Sasha, Jan 18, 2018.

  1. Sasha

    Sasha Senior Member (Voting Rights)

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    A small group of ME/CFS patients with an interest in research, including Simon McGrath, Graham McPhee, Carly Maryhew and others, are asking for the help of fellow ME/CFS patients with an important issue that will affect biomedical research in the US and elsewhere for years to come.

    The NIH/CDC are looking for feedback on how they propose researchers should measure aspects of ME/CFS patients’ health in all future research – including on how to determine whether a person experiences post-exertional malaise (PEM) and is therefore an ME/CFS patient.

    However, there may be serious problems with the proposed method. Your views are needed - hence the poll.

    The poll is here. The deadline is Wednesday 24 January.

    And please spread the poll on social media. The more responses, the more accurate the poll and the more weight it will carry with the NIH/CDC.

    So, do the poll! Spread the poll! This is important! :)
     
    Simon M, Kalliope, Justy and 19 others like this.
  2. Simon M

    Simon M Senior Member (Voting Rights)

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    Now on Facebook


    And twitter
     
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  3. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Done. Quick & painless.
     
    Justy, Simon M, Allele and 7 others like this.
  4. Trish

    Trish Moderator Staff Member

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    Done. Thanks to all concerned.
     
    Simon M, Wonko, Allele and 6 others like this.
  5. TigerLilea

    TigerLilea Senior Member (Voting Rights)

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    Done!
     
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  6. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    Shared on Millions Missing Canada facebook.
     
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  7. Joh

    Joh Senior Member (Voting Rights)

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  8. Sasha

    Sasha Senior Member (Voting Rights)

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    Thanks, Scott - it would be great if others with a big (or small!) social media platform could do the same. This thing needs big numbers!
     
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  9. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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  10. Simone

    Simone Senior Member (Voting Rights)

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    Done! Thank you to everyone involved!
     
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  11. Wonko

    Wonko Senior Member (Voting Rights)

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    Done - and lets hope it makes a difference.
     
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  12. Allele

    Allele Senior Member (Voting Rights)

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    Done--and thank you!
     
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  13. JemPD

    JemPD Senior Member (Voting Rights)

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    So good that this is being done. Many thanks to all concerned
     
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  14. Londinium

    Londinium Senior Member (Voting Rights)

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    Done. One comment/question: on Question 1, regarding whether the DePaul questionnaire accurately captures my experience of PEM, I wasn't clear on whether the criteria listed:

    required all of the bullet points to be included or only one or more? If it requires all of them, then it doesn't capture my experience exactly in the first/third bullet and so I would argue doesn't 'broadly reflect' for me personally. Whereas if you only need to meet a couple of them, then I would answer Yes to Question 1. (I went for No)

    Or am I overthinking this? :)
     
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  15. Sasha

    Sasha Senior Member (Voting Rights)

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  16. Simone

    Simone Senior Member (Voting Rights)

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    Shared on #MEAction Network Australia's social media accounts, and to Australian FB groups.
     
  17. Sasha

    Sasha Senior Member (Voting Rights)

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    That's brilliant - the more, the better. Big numbers are going to be very important for this, both to make sure it's representative and that it carries weight with the NIH/CDC. :thumbup:

    Has anyone else got access to some big platforms to help get this out there?
     
    Simone, Wonko, Inara and 3 others like this.
  18. Andy

    Andy Committee Member

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    Post on Reddit? Tried asking Solve if they will share? Same with ME Association.
     
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  19. Sasha

    Sasha Senior Member (Voting Rights)

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    @Simon M, don't know if you've thought about Solve and MEA.

    Does anyone who knows Reddit fancy putting this up there? Tagging @Cheesus, @Dr Carrot - not sure who's on Reddit, but I think that's a great idea, Andy.
     
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  20. Simon M

    Simon M Senior Member (Voting Rights)

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    I’m sorry this wasn’t clear. You only need to have a single symptom moderately and at least half of the time to qualify for post exertional malaise. However, a big problem with this is that some of the symptoms just seem to be about fatigue, And not linked to post exertional malaise, so someone with depression, for instance , could end up with a postexertional status quite easily. And not linked to post exertional malaise

    Second problem is that the symptoms may simply be an ongoing past of the illness and not linked to what most patients experience as postexertional malaise. A recent study of Multiple Sclerosis patients Found A rate of about 55% for each of the five symptoms above. Since anyone of these symptoms will give a post exertional malaise status, probably around 3/4 of MS patients qualified.Whether or not they experience post-exertional malaise, is another matter.

    Sorry, struggling with a migraine, so I might not be making a huge amount of sense here
     
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