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The presence of overlapping quality of life symptoms in primary antibody deficiency (PAD) and chronic fatigue syndrome (CFS): Bansal 2020

Discussion in 'ME/CFS research' started by Sly Saint, Mar 31, 2020.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Michelle, MEMarge, DokaGirl and 6 others like this.
  2. rvallee

    rvallee Senior Member (Voting Rights)

    Ah. So not a valid cohort.
    Uh, would you look at that, patients who frequently report X indeed do report X. Stellar work, champs. The Nobel committee is on speed dial and anxiously awaiting further research on this groundbreaking effort.
    What is it that they think "routine questioning" achieve or provide, especially given that they consist of a narrow and shallow slice with no validity, reliability or accuracy?

    What is the point here? Oh, right, there is no point. Churn and burn. The circle must go round and round. Fatigue is one of the most common symptoms in all of medicine. Consequently it is frequently reported. It is also commonly misrepresented and misunderstood. This is sometimes a surprise because almost nobody paid attention to it for long and most of those who do today can't tell a donkey from a hole in the ground.
  3. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Annoyingly, it doesn't say which of these criteria they used, if any. Though Bansal has his score chart, so perhaps he used that. It does require PEM.
    MEMarge and Invisible Woman like this.
  4. Mithriel

    Mithriel Senior Member (Voting Rights)

    The BPS people now refer to PEM a lot but they do not mean what happens with ME, just a generic I feel bad after I do too much and it takes me longer than it used to to get over it.

    Lucy Chu who did a comparison of what people with ME feel after exertion and how other people see it, refers to this as post exertional fatigue. We get a disturbance of the immune system and the consequences are delayed and out of all proportion to what we did.

    When you hear other people talk about how they feel it is completely different.

    What we have is so different from normal experience that no one else can understand it. This is not unusual. they use body suits to help doctors understand what there patients are experiencing in things like MS.

    Unfortunately people think they understand fatigue so extrapolate their experiences onto us. The word fatigue should be banned from all discussion of ME because it gives this false sense of insight that is so detrimental to us.
    Michelle, rvallee, Trish and 4 others like this.
  5. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Except in this case the Bansal score chart specifically measures whether it was delayed and prolonged:
    So it's not perfect, but it's certainly better than the vague stuff we're used to.

    It is surprising, though, that he doesn't describe PEM in this paper, since his score chart makes it essential.
    Michelle, ukxmrv and Invisible Woman like this.

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