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Co-creating recovery in CFS/ME: A reflexive exploration of a Rebuilding your Life programme

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Esther12, Nov 5, 2017.

  1. Sbag

    Sbag Senior Member (Voting Rights)

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    419
    sorry, stupid moment! So they haven't written it up as an actual paper, it is just a summary in with some others. Interestingly at the end it says "Treatment is uniquely based on a patient inspired intervention."
    If you had these amazing results from "the largest study ever conducted" in this group, you would expand a bit on the method of intervention which presumably is key. Or am I having more stupid thoughts?
     
  2. Trish

    Trish Moderator Staff Member

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    51,865
    Location:
    UK
    I'm trying to find out more about it. It's ridiculous to call it the largest study, since the FINE trial was also on house bound patients and was much bigger.
     
  3. Scarecrow

    Scarecrow Senior Member (Voting Rights)

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    329
    Location:
    Scotland
    I don't this means inspired by the actual patients involved in the study. At least one of those conducting the trial is recovered but was formerly severe. This same person winced visibly, when I talked about the psychosomatic model of ME being overturned.
     
    MEMarge, Viola, Sbag and 2 others like this.
  4. Esther12

    Esther12 Senior Member (Voting Rights)

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    4,393
    FINE did widen their entry critieria though, so maybe they're not counting that as a study on severe CFS/ME?
     
    MEMarge, Trish and ladycatlover like this.
  5. Esther12

    Esther12 Senior Member (Voting Rights)

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    4,393
    Clare McDermott is the corresponding author of this new paper with CureME at the London School of Hygiene & Tropical Medicine.

    https://onlinelibrary.wiley.com/doi/full/10.1111/hex.12857

    Can't say I'm enthused by McDermott's involvement after the work discussed in this thread. Qualitative research generally seems to allow researchers a great deal of leeway in how they interpret/present patient concerns, and having someone like McDermott doing this doesn't sound like a good thing to me.
     
    MEMarge, JaneL, TiredSam and 2 others like this.
  6. NelliePledge

    NelliePledge Moderator Staff Member

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    13,140
    Location:
    UK West Midlands
    Maybe she learned from doing work that wasn’t from BPS perspective. At least this one wasn’t full of fear avoidance and sick role and other BPS buzz words.
     
    MEMarge, JaneL, Esther12 and 2 others like this.
  7. Woolie

    Woolie Senior Member

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    2,918
    This was interesting (from the paper, bolding mine):
    Comparing PwME's experience to that of people (later) diagnosed with MS really emphasises the point that our responses are not pathological, they're normal.
     
    inox, Snow Leopard, MEMarge and 17 others like this.
  8. Hutan

    Hutan Moderator Staff Member

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    26,520
    Location:
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    That qualitative research paper with ME and MS patients has a thread here.
    It was quite good, I've used some of the quotes.
     
    inox, MEMarge, Woolie and 4 others like this.
  9. MEMarge

    MEMarge Senior Member (Voting Rights)

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    2,733
    Location:
    UK
    Clare McDermott has herself recovered from CFS/ME.She developed it after encephalitis aged 12 and was seriously ill for over 15 years.

    "I was very lucky in having help over a number of years to make a recovery journey, which despite many ups and downs, has finally led to me being well again."
     
    Invisible Woman likes this.
  10. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    3,324

    Blimey, sounds like The Secret cult or Channelling Abraham.
     
  11. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    3,324
    She's also associated with the Poole based Emotional Processing group, a U of Bournemouth research unit and U of Southampton.

    http://emotionalprocessing.org/chronic-fatigue-syndrome/

    and I believe her mother (or a close relative) was/is an OT at the Dorset "Wareham CFS Clinic" which was used as a model for the English CFS Clinics.
     
    TiredSam and MEMarge like this.
  12. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Messages:
    10,280
    Oh dear.

    the references on that website are very old 2002 is the newest - the report to the govt Chief Medical Officer. 1994 CDC diagnostic criteria. All that energy, yet as a research coordinator can't be arsed to keep up to date.

    Waffle, waffle, waffle....

    Bit at the end I got cured, acknowledges she was lucky, talks about a Dr Fleming also cured who wrote:
    Right. Lovely. Now cured, that implies an enlightened being with a deeper insight into the workings of the universe and beyond.

    Nothing about the humbling aspect of the blind luck if spontaneous recovery (or remission) and, with diagnostic criteria that old, the possibility of plain old misdiagnosis.

    Harumph.

    I feel better now I've got that lot off my chest.
     

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