Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Do the poll on the NIH/CDC's proposed PEM definition - (POLL NOW CLOSED)

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

  1. Sasha

    Sasha Fine, thank you

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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! :)
     
    PatJ, Laurie P, Simon and 4 others like this.
  2. Simon

    Simon

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    Now on Facebook


    And twitter
     
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  3. Sasha

    Sasha Fine, thank you

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    I've just done the poll - very quick and easy.

    And important!

    Do the poll! Spread the poll! :)
     
    Laurie P and Joh like this.
  4. Nielk

    Nielk

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    Do you realize that one does not have to qualify all five questions of the DSQ? Per NIH/CDC CDE on PEM:

    "Scoring algorithm: A frequency of at least 2 and a severity of at least 2 on any one of the 5 questions on the DSQ PEM subscale indicates that PEM is present"
     
    Laurie P and JayS like this.
  5. Simon

    Simon

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    Yes, and that's a big part of the issue (we tried to keep the questionnaire itself as simple as possible so didn't go into this in detail).

    So these are the questions
    • Dead, heavy feeling after starting to exercise.
    • Next day soreness or fatigue after non-strenuous, everyday activities.
    • Mentally tired after the slightest effort.
    • Minimum exercise makes you physically tired.
    • Physically drained or sick after mild activity.

    Anyone one of those that you have at least moderate intensity and at least half the time (note, not half the time as a post-exertional problem) will give a PEM result. "Mentally tired after the slightest effort" captures an aspect of mecfs, not necessarily of PEM.
     
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  6. caledonia

    caledonia

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    The IOM PEM description seems to be very similar to the ME-ICC description of PENE:

    A. Post-Exertional Neuroimmune Exhaustion (PENE pen׳-e) Compulsory This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are:

    1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.

    2. Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms

    3. Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days.

    4. Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer.

    5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in preillness activity level.
     
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  7. Sasha

    Sasha Fine, thank you

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    Bump!
     
    Laurie P likes this.
  8. Sasha

    Sasha Fine, thank you

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    Last night, the poll had over 360 responses already, apparently - let's get it to 500.

    We want the NIH/CDC to listen to us! :)

    Do the poll, spread the poll... :)
     
    Simon and Laurie P like this.
  9. Sasha

    Sasha Fine, thank you

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    Bump! The poll is closing early to allow time to write up the report.

    It will close today at 2pm GMT (just over two hours).

    Please fill it in, if you haven't already done so.

    Over 600 responses so far! :)
     
    Laurie P likes this.

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