1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 18th March 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

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.

Tags:
  1. Simon M

    Simon M Senior Member (Voting Rights)

    Messages:
    882
    Location:
    UK
    We made it to 760 responses, which is an incredible results. Thanks to everyone who completed the survey or shared. Paul closes tomorrow, early, at 2 PM GMT.

    This is the link if anyone wants to share.
    https://www.surveymonkey.com/r/7VXQSL2
     
    Simone, ahimsa, Sunshine3 and 9 others like this.
  2. Samuel

    Samuel Senior Member (Voting Rights)

    Messages:
    620
    does broadly mean we kind of take a gestalt? or am i too fogged to be using a computer?

    it could partly be severity-related? it seems possible that an almost asymptomatic or very mild sufferer [e.g. able to work and get to doctors but no ability to socialize or cook more than a bowl of noodles] could feel a bit of resonance with de paul, then progress to moderate [e.g. housebound] and then feel resonance with iom [and then wonder if de paul is measuring sleep apnea].

    or maybe i'm totally off? just thought i'd throw it through the fog just in case.
     
  3. Simon M

    Simon M Senior Member (Voting Rights)

    Messages:
    882
    Location:
    UK
    Broadly is a deliberately-generous term. So if you think it’s not quite right, but generally covers it, that’s broadly and a Yes. If you think not really, or definitely not, then it’s a No.
     
  4. Alice

    Alice Established Member (Voting Rights)

    Messages:
    41
    Do we really want the post exposure to things that trigger an exacerbation of ME/CFS symptoms to be called post exertional malaise or does this just reinforce the idea that the disease is trivial and people feel a big off and out of sorts? Post Exertional Neuroimmune Exhaustion PENE as per the ICC didn't really take off. Crash is pretty accurate but NOT too medical sounding. Just wondering once PEM is in the common data elements we have it for ever most liekly?
     
  5. Samuel

    Samuel Senior Member (Voting Rights)

    Messages:
    620
    good question. i also wonder at "exertion". it's also exposure. to light noise stress etc. and bad sleep can produce the same effects. do we have evidence that this should be limited to exertion?
     
  6. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

    Messages:
    2,855
    Location:
    betwixt and between
    Done (the poll) .
    Hopefully not too late (high noon local time).
     
    Simon M, MeSci and Andy like this.
  7. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    3,768
    Location:
    UK
    Bump! The poll closes at 2pm today.

    Now or never, guys! :)
     
    Valentijn, Joh and Andy like this.
  8. Cheesus

    Cheesus Established Member (Voting Rights)

    Messages:
    95
    Sorry, Sasha. I was a bit slow on the uptake on this one as I haven't been on the forum for a while.
     
    Joh, Andy and Sasha like this.
  9. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    3,768
    Location:
    UK
    Not to worry - someone posted it anyway. :)
     
    Joh, Cheesus and Andy like this.

Share This Page