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David Tuller On Exposing the Bad Science Behind the Biopsychosocial Effort to Define ME/CFS (Cort Johnson, HealthRising)

Discussion in 'General ME/CFS news' started by MSEsperanza, Apr 17, 2019.

  1. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    https://www.healthrising.org/blog/2...cience-biopsycosocial-chronic-fatigue-me-cfs/
     
    ahimsa, MEMarge, Dolphin and 21 others like this.
  2. Hutan

    Hutan Moderator Staff Member

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    That's a nice piece on David Tuller; a good introduction for people not very aware of what he has been doing, or indeed not knowing much about the PACE trial.

    @dave30th

    @RoseE - maybe useful for the preparation for David's visit to NZ?
     
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  3. Sean

    Sean Senior Member (Voting Rights)

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    Thank you, Cort. :thumbup:
     
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  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    something that many people (outside Australia) have noticed and that maybe advocates in Oz should try and remedy(?)
    @MyalgicE
    @Simone
     
  5. oldtimer

    oldtimer Senior Member (Voting Rights)

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    There's more hope of calling it chronfag - or chronny for short;)
     
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  6. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    I would like to see a similiar piece, perhaps with shorter questions, in the New York Times or the Guardian.
     
    Last edited: Apr 18, 2019
    MyalgicE, MEMarge, Kitty and 4 others like this.
  7. MyalgicE

    MyalgicE Senior Member (Voting Rights)

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    Absolutely @Sly Saint! You’ll notice that is true from watching the Emerge conference talks recently.

    It’s perpetuated by patient organisations too.

    I can’t tell you how infuriating it was when my local paper wrote about me (where I never uttered the words ‘chronic fatigue’ even followed by the word ‘syndrome’) and instead of getting quotes from the scientists I recommended, he went to the local MECFS society and they repeatedly used ‘chronic fatigue’ so that was the phrase that appeared as the big headline above my photo on page 3 of the paper.

    I rang to discuss it with the MECFS society and the local president said she was “delighted with the coverage” and saw no problem.

    For all our meetings, ME Australia are always consistently very clear on language and on definition, explaining ME is a defined disease; fewer than third of Australians diagnosed with chronic fatigue syndrome meet the criteria for ME according to a study by Griffith University; many go undiagnosed for decades; and the Australian CFS guidelines are extremely unhelpful, make harmful recommendations and have contributed greatly to misdiagnosis.

    The Australian CFS guidelines describe it being on the ‘continuum of fatigue, giving the false impression that a specific clinical “entity” has been delineated’.
    https://meaustralia.net/2018/11/30/...n-chronic-fatigue-syndrome-guidelines-and-me/

    We do our best but the Australian CFS guidelines are pretty much equivalent to ‘chronic fatigue’ so it’s unhelpful when ME is equated with Australian CFS.

    Another pet hate “condition” instead of “disease”.
     

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    Last edited: Apr 18, 2019
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  8. Simone

    Simone Senior Member (Voting Rights)

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    It is a problem here. We’ve been working on educating people not to use “chronic fatigue” as a name of the illness, and have emphasised that it is a symptom, just one of many, and not the primary one. Sadly, even some of our best clinicians use the phrase, and some patients too. It’s hard going to get them to really understand the cost of doing so, but we’ve been plugging away at it!
     
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  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I appreciate that; the US have only fairly recently started to realise that by using 'chronic fatigue' it in effect puts it and them "in the BPS camp", and although a lot of the researchers in particular don't like ME as a name, by using it (eg ME/CFS) it tends more to identify with the 'biological camp'. Maybe that is an angle that you could use?
    "don't want GET and CBT? then ditch 'fatigue' and use M.E".
     
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  10. Dolphin

    Dolphin Senior Member (Voting Rights)

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    “Chronic Fatigue Syndrome” is a long term to have to say repeatedly; I can see why it could get shortened to “chronic fatigue”. I remember Abhijit Chaudhuri doing it also in an interview. Encouraging anyone who wants to use the term to say “CFS” is a way to avoid “chronic fatigue”.
     
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