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Version 1.0 of ME/CFS Common Data Elements now available

Discussion in 'General ME/CFS News' started by Samuel, Feb 28, 2018.

  1. Samuel

    Samuel Senior Member (Voting Rights)

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  2. strategist

    strategist Senior Member (Voting Rights)

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    I think this may be old news, unless there has been an update. The update tab shows nothing however.
     
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  3. Samuel

    Samuel Senior Member (Voting Rights)

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    nih emailed it today. if it is a duplicate, then we should delete the thread.

    eta: have we been keeping versions of all major websites? so it can be compared using diff or whatever windows has to offer? it would be good to regularly download all major web pages and keep them under version control.
     
    Last edited: Mar 1, 2018
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  4. Andy

    Andy Committee Member & Outreach

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    The webpage itself is claiming to have been updated today but there doesn't seem to be anyway to tell with what.
     
  5. Dolphin

    Dolphin Senior Member (Voting Rights)

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    The page has definitely been updated since January.
     
  6. Valentijn

    Valentijn Not a moderator

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  7. Valentijn

    Valentijn Not a moderator

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    https://www.commondataelements.ninds.nih.gov/Doc/MECFS/Fatigue_Subgroup_Summary.pdf is interesting ...
    They are acknowledging that fatigue measurements are lacking, though I would argue that fatigue isn't going to be suitable for defining cases. They might be starting to understand that at least:
    This probably refers to the Chalder Fatigue Questionnaire:
    I think this approach will get them to the right answers eventually, and it's a pretty firm rejection of the symptom-lumping seen in psychosomatic approaches:
    That document also lists the fatigue scales examined, and briefly describes what they measure and how useful they are.
     
  8. Valentijn

    Valentijn Not a moderator

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    PEM summary: https://www.commondataelements.ninds.nih.gov/Doc/MECFS/PEM_Subgroup_Summary.pdf

    This is also looking pretty good, though I still strongly object to including immediate symptoms of exercise intolerance as part of PEM. I think they took the patient recommendations (the survey some patients here started) into account:
    PEM is defined as an abnormal response to minimal amounts of physical or cognitive exertion that is
    characterized by:

    Though it does look like they want to pin it down better, including in objective terms:

    This is where they're currently at. Unfortunately the DSQ PEM subscale seems to be the only thing available:

    The PEM subgroup is also pushing hard for more research into various aspects of PEM, and Fukuda gets slammed a bit in the process :D:

    Despite the current promotion of the DSQ PEM subscale, they seem to understand the limitations in the approach taken to develop it (choose the least-inappropriate option from a list);

    And a way to assess subjective changes in PEM is needed, for study endpoints:

    The DSQ isn't suitable for it:
     
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  9. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  10. Andy

    Andy Committee Member & Outreach

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  11. Amw66

    Amw66 Senior Member (Voting Rights)

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  12. Andy

    Andy Committee Member & Outreach

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  13. Dolphin

    Dolphin Senior Member (Voting Rights)

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