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Lancet Editorial - Peter White & Trudie Chalder CFS: treatment without a cause

Discussion in 'General ME/CFS News' started by Dolphin, Feb 29, 2012.

  1. Firestormm

    Firestormm Senior Member

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    Am probably out of my depth here but the authors of CBT in ME have also looked and published CBT in MS for example, haven't they?

    Was that the same approach? I only did a short google but came up with a few 'hits' and this one looked at 'fatigue' in MS using CBT and Chalder was an author: http://www.ncbi.nlm.nih.gov/pubmed/18256342 2008

    'The results from this RCT suggest that CBT was a more effective treatment for MS fatigue than RT, but that both treatments resulted in significant improvements in fatigue which were maintained over the 6-month follow-up period.'

    All right the above example is a little 'old' and CBT here is applied differently I suppose (haven't read the whole thing) and it was compared to Relaxation Therapy - but it would be interesting to discover if this type of CBT uses similar language to that used in the ME studies and applications I think.

    I guess my point is that CBT is used to 'treat' and overcome 'fatigue' in MS and I am wondering if it can be compared? Here's the beginning of the introduction from the above paper:

    'Multiple sclerosis (MS) is a chronic inflammatory disease of the central nervous system. There is substantial variability in the symptoms experienced by patients, but between 76% and 97% of patients complain of fatigue (14). The pathophysiological mechanisms of this fatigue are still poorly understood (5), but for many, fatigue is one of their more debilitating symptoms, having a substantial impact on their quality of life and ability to carry out day-to-day tasks (2,6,7)....'

    Ok so far with the language? And then later:

    '...This model proposes that primary disease factors trigger the initial symptom of fatigue in MS, and the fatigue is perpetuated or worsened depending on how people react to the fatigue cognitively, emotionally, behaviorally, and physiologically...'

    Here they seem to suggest that the 'fatigue' is largely based on one's 'reaction' i.e. that a patient has some control of this debilitating symptom.

    Sound familiar?
  2. Esther12

    Esther12 Senior Member

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    If that's the CBT for fatigue in MS study I'm thinking of, they end up with MS patients feeling less fatigue than the healthy population, and make it clear that the subjective measures they are using may not represent actual levels of disability and exaggerate the efficacy of treatments. To me, it was interesting to see how the problems with these sorts of studies are more honestly discussed with MS, than CFS.

    I cant remember the details, but didn't this study show CBT for MS to be much more effective than CBT for CFS? And the control therapy (relaxation) was really effective too? I think that there may have been a discussion of it in the PACE thread.
  3. Dolphin

    Dolphin Senior Member

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    I read the study. It is quite similar to the CBT therapy for CFS.

    However, just because Rhona Moss-Morris & Trudie Chalder are now expanding in to MS, it doesn't make their therapy any more acceptable to me.

    Also, people with MS don't seem to have the unusual response to exercise seen in ME/CFS e.g. see recent White*, Light et al study http://forums.phoenixrising.me/show...se-in-CFS-MS-and-Controls&highlight=sclerosis

    * not PD White


    Yes, a lot better! Hard to believe.

    They did it more than the ME/CFS studies alright. Still not enough for me.

    Yes
    Yes, and Yes.
  4. Firestormm

    Firestormm Senior Member

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    The therapy isn't acceptable to me either I was just trying to demonstrate the language used is as similar as the approach i.e. a blanket one. 'Any 'fatigue' then get CBT!'

    The CBT I have been involved with personally as a patient, was useful in that it tried to teach me acceptance. Indeed I sought out counseling because I was unable to accept the limitations imposed by my conditions and kept fruitlessly fighting against them and beating myself up about my 'failure' to push through like I presumed everyone could.

    This led to me getting all ******-** about the impositions of my 'new life' and was part of the supposed 'boom and bust' cycling. But like I said before - to my knowledge I have not partaken of the PACE protocol of CBT and neither - to my knowledge - have I been taught to overcome my illness beliefs - unless of course you consider my belief to have been that 'I can fight this' which sadly proved to not be the case.

    For the record - from the papers that I have managed to read I do question the ability to objectively measure progress and report the results as well as the language used so often and then spun in the press. I have also always regarded CBT as a 'therapy' and not a 'treatment' for my conditions. Relatedly, I have sought 'help' for dealing/managing my limitations and 'new life' almost every time I have relapsed following a protracted and diagnosed 'viral infection' that has dragged me from my new-found (and hard-won) plateau.

    Not once have my primary diagnoses been questioned as being incorrect or as being anything other than chronic and debilitating long term conditions and the only additional diagnosis (on occasion) has been depression caused by (in part) my unwillingness to accept and effectively adjust. Something that those concerned (if not me) found perfectly understandable.
  5. Snow Leopard

    Snow Leopard Senior Member

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    I wouldn't have nearly as much issues with CBT if they used the Friedberg/Jason type models, simply where coping and management is the goal, rather than "recovery". My problem is this frequent talk of recovery and dishonest cherry picking of results by certain individuals to make it look like recovery is possible.
    Sean, Dolphin and Firestormm like this.
  6. oceanblue

    oceanblue Senior Member

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    Just to join in the fun.

    Yes, that Rona Moss-Morris stuy on CBT for MS did find CBT worked so well that patients had better-than-healthy levels of fatigue; it also found that Relaxation Therapy worked very well (and was not statistically significantly different from CBT). Also the same study did acknowledge the problem of self-report bias.

    However, the results for CBT in MS are all over the place and one review, which I have now lost, concluded that what was needed was yet more reviews/meta-analyses of the small no. of CBT for MS trials to date (which overall are inconclusive) but some decent trials. The same applies to CBT for fatigue in Rheumatoid Arthritis and SLE.

    Finally, MS patients respond very differently to exercise than CFS patients. The Lights gene expression study showed this for gene expression but also for self-rated fatigue and pain after moderate exertion. And exercise as a treatment for MS was first trialled after reports from MS patients that exercise helped fatigue. MS organisations are generally supportive over exercise for MS, presumably because their members respond very differently to exercise than CFS patients.
    Dolphin and Firestormm like this.
  7. Enid

    Enid Senior Member

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    Sorry can't see this as fun oceanblue - far too much coming to light now of the pathologies involved (real medical understanding - no games).
  8. Dolphin

    Dolphin Senior Member

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    That's the opposite of Dutch/Nijmegen CBT anyway:
    Sounds different from PACE Trial CBT, except maybe in the initial stages where they try to get people to get well by sticking to the program.
    Firestormm likes this.
  9. Snow Leopard

    Snow Leopard Senior Member

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    A side note, Dr Andrew Lloyd and Dr Rosanne Coutts were interviewed on Radio National (Australia) and both seemed to be emphatic that CBT was not a cure. Which seems notable given the focus mentioned above (and the 'is recovery possible after CBT') study a while back.
    alex3619 and Firestormm like this.
  10. Esther12

    Esther12 Senior Member

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    I thought I might mention in here that the follow up study for FITNET showed no statistical difference between treatment and control groups after more time had passed.

    "Just because we don't understand it, doesn't mean we can't make money from treating it. Ineffectually."

    http://pediatrics.aappublications.org/content/early/2013/05/08/peds.2012-2007.abstract

    Bob, Valentijn and Dolphin like this.

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