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David Tuller - Trial By Error: A Q-and-A with Leonard Jason, on Case Definition

Discussion in 'General ME/CFS news' started by Kalliope, May 2, 2018.

  1. Webdog

    Webdog Senior Member (Voting Rights)

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    Yes.

    Even in the United States, there are medical providers who in the past refused to diagnose anyone with ME/CFS. So any ME/CFS patients they have would be undiagnosed or misdiagnosed (likely as psychiatric).

     
    Last edited: May 3, 2018
  2. Webdog

    Webdog Senior Member (Voting Rights)

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    From the IOM report, a breakdown of PEM symptoms. http://nationalacademies.org/hmd/~/media/Files/Report Files/2015/MECFS/MECFS_KeyFacts.pdf
    pem.png
     
    Last edited: May 3, 2018
  3. Inara

    Inara Senior Member (Voting Rights)

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    That's a good one.
    But I remember that iron deficiency tiredness is closer to feeling "worn-out" (I hope that's the correct word...), no?

    I confess I tend/tended to go to the doctor only if I really felt terrible or someone told me it would be better to go. That's maybe not the best thing to do.
    Still I wonder if there are really many people who go to the doctor because of tiredness?

    Today I saw two young women. One of them talked about a questionnaire: "Do you feel tired in the morning? - Haha, of course, I feel tired every morning." She went there, and she looked so vibrant and fresh and fit.
    I knew in that moment that "chronic fatigue" and "fatigue" is not what this woman seemed to experience and it is not what we experience.
     
  4. Inara

    Inara Senior Member (Voting Rights)

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    What puzzles me: Doesn't Leonard Jason have ME, too? I thought I read it somewhere. Shouldn't he know PEM if yes?
     
  5. Mij

    Mij Senior Member (Voting Rights)

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    I had iron deficiencies for over 20 years and it's very different from M.E 'fatigue'. When my iron stores got low I felt like crying and got dizzy/out of breath when I bent over or climbed a few steps.
     
  6. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    I agree that there are different types of tiredness, fatigue, or exhaustion. As well as frequently being iron deficient I also had untreated hypothyroidism for most of my life, and the way these two conditions affect me isn't the same. I've never been diagnosed with ME or CFS, so whether I even have the condition is debatable. I have no plans to seek a diagnosis though. I don't think it would improve my situation at all, so why bother?
     
  7. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    I forgot to mention that being "Tired All The Time", which is referred to by its initials (TATT) in the UK, is the commonest single reason for seeing a GP that there is, as far as I'm aware.

    Here's what the patient.info site has to say, for what it's worth :

    https://patient.info/doctor/fatigue-and-tatt

    Edit : I should have added this shocker as well :

    https://www.nhs.uk/Livewell/tiredness-and-fatigue/Pages/why-am-I-tired.aspx
     
  8. Ravn

    Ravn Senior Member (Voting Rights)

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    Seems to me the same faulty logic based on linguistic similarities that equates the symptom CF with the illness CFS is happening all over again with PEM: the symptom 'post-exertional fatigue' (aka exercise intolerance) is confused with the 'illness' PEM.

    Of course exercise intolerance can be a strong feature of PEM just like fatigue can be a strong feature of ME/CFS but that doesn't make them the same thing.

    Example: A patient with heart failure will probably feel excessively exhausted after only minimal activity. That's exercise intolerance. It's not PEM.
     
    Pechius, ahimsa, Trish and 7 others like this.
  9. Barry

    Barry Senior Member (Voting Rights)

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    It depends on symptom overlap surely.
     
  10. Barry

    Barry Senior Member (Voting Rights)

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    Yes, there is a something of a chicken and egg problem.
     
  11. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    I disagree a definition with more symptoms brings in more psych patients. The same patients by definition would also satisfy a definition with fewer of the same symptoms. It's basic set theory. You don't suddenly get new patients by adding stricter criteria/more symptoms.
     
    andypants, Inara, Barry and 5 others like this.

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