1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for 'CFS'.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 4th November 2024 is here.
    Dismiss Notice
  3. Welcome! Read the Core Purpose and Values of our forum.
    Dismiss Notice

Rethinking the treatment of CFS — a reanalysis and evaluation of findings from a recent major trial of GET and CBT (2018) Wilshire et al.

Discussion in 'Psychosomatic news - ME/CFS and Long Covid' started by Tom Kindlon, Mar 22, 2018.

Tags:
Page 12 of 14
  1. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,254
    Tom Kindlon, May 2, 2018
    #221
    Jan, Joh, Helen and 25 others like this.
  2. Webdog

    Webdog Senior Member (Voting Rights)

    Messages:
    2,265
    Location:
    Holodeck #2
    Seems those who defend PACE are all eventually rewarded. Congratulations, Jon Stone. :yuck:

    stone.png
     
    Last edited: May 16, 2018
    Webdog, May 16, 2018
    #222
    Joh, Inara, Chezboo and 5 others like this.
  3. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Messages:
    10,280
    Not just Jon Stone @Webdog. If his colleague is the same Carson I've heard of he's BPS through and through.
     
    Invisible Woman, May 16, 2018
    #223
    Inara, Luther Blissett, Barry and 3 others like this.
  4. Woolie

    Woolie Senior Member

    Messages:
    2,922
    Liked by Michael Sharpe I see. They're pretty tight, those BPS folks.

    Still, lots of FND patients are genuinely grateful to Stone for at least acknowledging the existence of their disease and treating them with compassion. His clinic offers some treatment (CBT and physio I think), and many seem to appreciate that. I think patients also appreciate being given a name for their symptoms, FND. It sounds a lot better to outsiders than CFS, doesn't it? And it sure beats telling friends and family that your symptoms are just unexplained.

    (Of course FND is one of those code words that means "psychological" to doctors, but not to patients. We know that. But to many, FND sounds like a real and serious disease, whereas CFS and ME definitely do not.)

    The other reason why FND patients are more accepting of all this BPS stuff is that in FND, the psychological nature of the models is usually carefully hidden from them (e.g. "you don't have a problem with the brain hardware, its more a problem with the software", that sort of thing). Even when psychological factors are mentioned, "past trauma" is usually emphasised over psychological weakness (this is a bit of a lie, current BPS models emphasise psychological weakness not past trauma). Many patients seem to get comfort out of being able to blame some awful person from their past.

    FND patients are also a smaller, more disparate bunch, so are less well equipped to question what the good doctor says.

    But concealing from your patients the true nature of your explanation - even if you believe its for their own good - is that ethical?
     
    Woolie, May 17, 2018
    #224
    Joh, mango, TiredSam and 21 others like this.
  5. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    2,736
    It's sickening, really. If they have a neurological disorder, they could be going without treatment, which is likely to make them worse.
     
    adambeyoncelowe, May 17, 2018
    #225
    TiredSam, Inara, Indigophoton and 5 others like this.
  6. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    6,769
    Amw66, May 17, 2018
    #226
    Inara, Invisible Woman and Luther Blissett like this.
  7. Trish

    Trish Moderator Staff Member

    Messages:
    55,414
    Location:
    UK
    Oh dear, looking at Stone's website I find this:
    http://www.neurosymptoms.org/fatigue/4533053151

    He then goes on to recommend NHS Choices (which recommends CBT/GET), a book by Sharpe, and NHS clinics, and says there is good evidence for the treatments.

    If that's the quality of his work, I fear for his patients.
     
    Last edited: May 17, 2018
    Trish, May 17, 2018
    #227
    TiredSam, Webdog, Inara and 11 others like this.
  8. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,420
    "functional neurological symptoms"

    Now there's a fluffy get-out-jail-free non-description if ever there was.
     
    Barry, May 17, 2018
    #228
    TiredSam, Inara, Wonko and 4 others like this.
  9. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    2,736
    This is so stupid. ME *is* a medical AND a neurological condition. Hand-wavey fatigue alone is NOT ME.
     
    adambeyoncelowe, May 17, 2018
    #229
    TiredSam, Inara, Wonko and 5 others like this.
  10. Woolie

    Woolie Senior Member

    Messages:
    2,922
    Yes, I definitely think there are huge costs to patients with this whole BPS enterprise. Long-term costs associated with incorrect hypotheses that are hard to disprove. But I wanted to point out that actual real patients are actually genuinely grateful to Stone, I've spoken with some. That's such a different situation to MECFS - where there's pretty universal contempt for the major BPS figures. I thought it was interesting to explore why.

    Some of it is because the BPS figures in this area have been more wily in presenting their ideas to patients. So there's a fair bit of deceit going on. But there's probably some actual advantages to having a name for your disease which doesn't sound totally bunk to outsiders (I'm assuming that the alternatives would be no label, MUS or conversion disorder).
     
    Woolie, May 17, 2018
    #230
    mango, TiredSam, Inara and 9 others like this.
  11. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    2,736
    You're probably right. And FND is such a vague term it means everything to everyone. The patients do seem caught up in the propaganda. I wonder if, once there's a biomarker or test for ME, that'll change?
     
    adambeyoncelowe, May 17, 2018
    #231
    Inara, Wonko, Invisible Woman and 2 others like this.
  12. Keela Too

    Keela Too Senior Member (Voting Rights)

    Messages:
    1,357
    Location:
    Sally Burch - Northern Ireland
    Ho hum... they are coming at us from all angles. By giving as many people CFS/ME diagnoses as possible so they can have lots of people saying - "Oh yes I had ME and now I'm running marathons again". What a ploy!

    @dave30th I'm sure you've been alerted to this, and I'm sure you also have far too many leads to follow already, but I've tagged you anyway.
     
    Keela Too, May 17, 2018
    #232
    TiredSam, Inara, Amw66 and 5 others like this.
  13. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    4,896
    Location:
    Cornwall, UK
    'Information' should be in inverted commas at the very least. I came across that site many years ago. It's shocking.
     
    MeSci, May 17, 2018
    #233
    Inara, Amw66, Wonko and 4 others like this.
  14. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    15,175
    Location:
    London, UK
    • Bring not to see me cease to live
      A doctor full of phrase and fame
      To shake his sapient head
      And give the ill he cannot cure a name.
    (Matthew Arnold).
     
    Jonathan Edwards, May 17, 2018
    #234
    TiredSam, Amw66, Indigophoton and 11 others like this.
  15. Cheshire

    Cheshire Moderator Staff Member

    Messages:
    4,675
    Sorry, long (and a bit personal) post.

    In the early days, when I was still in limbo (am I out now? Wondering), I was told by my GP that my neurological symptoms were functional, which was not really a firm diagnosis but a track which I followed up to Stone and al. (nearly nothing on the subject in French).

    I had at this point been told by a psychiatrist that I had no psychiatric disorder and was being brought back to a psychosomatic etiology by every other doctors in town. It really was confusing.

    Though a psychosomatic diagnosis made little sense to me (I had no psychiatric symptoms, no past history of trauma, no recent emotional shock, nice family life, just a relatively stressful but enjoyed job), the thing that mattered most was to get better, and if my symptoms were psychosomatic, well be it, I was ready to have a psychotherapy and even psychotropic drugs (but less keen on these).

    Here, the question of the symptoms being psychosomatic or not is not a side question, as many psychosomatic proponents keep repeating. It is central to the way one’s going to handle the problem.

    What I read in Stone and his mates' articles was muddy. They were saying at the same time that in a sense FND was not a psychogenic disorder, but that for some people it was, that psychotherapy was a great tool, but that it was not for everyone, that attention played a central role and so on so on… Their take on the word "functional" is particularly worrying, they are saying at the same time that it does not imply a psychiatric etiology, and using it as a synonym of psychogenic. That made me defiant. Their texts were not making things clearer, but I was made more and more puzzled. Especially I was getting the impression that they were not telling the whole truth, for the patients’ good. I can’t figure out clearly even now, what their theory is. It is not clear at all, often not very coherent, it’s mainly hypothesis presented as facts and I’m not teaching you anything new here, just a simple look at Stone's CFS page on his website gives a hint at his level of scientific requirement... I then read a book, “overcoming functional neurological symptoms” and it was so unbelievingly patronizing and full of simplistic bullshit that I gave less and less credit to psychosomatic explanations.

    But contrarily to Wessely, Sharpe and their likes, Stone (and Mark Edwards to some extent) seem (I may be wrong) to have a real empathy towards their patients. They’re not dismissive and they think they’re truly trying to help. They often engage with patients' concerns and try to answer questions, which is something "CFS specialists" never do, on the contrary. That may explain why patients trust them.

    I also think that some of the movement disorders they describe are a bit like stutter. Some people who can’t walk are able to run, like a stutterer unable to talk can sing. And like for stammer, rehab and stress management can be of real help.

    But if rehab and psychotherapies may have helped some of their patients, the problem arises when psychogenic theories are forced on all patients without any evidence that emotional distress is the cause of their problems.

    And Stone is not helpful at all in this because:

    He’s not trying to find who may be helped by his pet treatments and who may not.

    He’s not at all trying to look at any alternative theory, he never considers any biomedical explanation for these disorders.

    That’s where he’s really letting down his patients.
     
    Last edited: May 17, 2018
    Cheshire, May 17, 2018
    #235
    Gecko, mango, Keela Too and 16 others like this.
  16. Woolie

    Woolie Senior Member

    Messages:
    2,922
    Woolie, May 17, 2018
    #236
    mango, Inara, Indigophoton and 3 others like this.
  17. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    2,736
    Nice. Thanks for that. It's very helpful.
     
    adambeyoncelowe, May 17, 2018
    #237
    Inara, Indigophoton, Invisible Woman and 2 others like this.
  18. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

    Messages:
    3,860
    Location:
    Australia
    The hardware/software analogy is simply body/mind duality with a different name. This needs to be called out whenever invoked.
     
    Snow Leopard, May 17, 2018
    #238
    andypants, Wonko, Woolie and 9 others like this.
  19. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    2,736
    Exactly. Since they're all about resisting Cartesian dualism!
     
    adambeyoncelowe, May 17, 2018
    #239
    Wonko, Woolie, mango and 2 others like this.
  20. ukxmrv

    ukxmrv Senior Member (Voting Rights)

    Messages:
    927
    Just posting this while we are on the subject of the Functional stuff. This is from the "Benefits and work" newsletter (they write guides to claiming UK benefits)

    "“I have been a member of B&W for 4 years now and can honestly say that I would have got nowhere without you. I have Functional Neurological Disorder ( new name for CFS), arthritis and sciatica. I have just been awarded 'ongoing' Enhanced rates for both elements of PIP. By following your advice on understanding and completing the forms, I am able to continue having use of motability car; without which I would have been housebound. I am truly grateful and at this moment quite emotional as months of distress and worry is over with again ( until of course the time comes round again for yet another reassessment). Joining B&W has to be one of the best things I have ever done.
    Sincerest gratitude and best wishes to the Team.”
     
    ukxmrv, May 17, 2018
    #240
    Hutan, Wonko, Sly Saint and 8 others like this.
Page 12 of 14

Share This Page