Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Cognitive Behavior Therapy for Chronic Fatigue Syndrome: Where to Go From Here? Knoop

Discussion in 'Latest ME/CFS Research' started by Dolphin, Dec 20, 2011.

  1. Dolphin

    Dolphin Senior Member

    I just read this is paper from Hans Knoop, who appears (from a distance) to be Gijs Bleijenberg's heir apparent at Nijmegen. He has been involved in all sorts of frustrating papers incl. PACE Trial commentary (they talked about the strict criteria for recovery used!), CBT is safe for CFS (post-hoc study with dodgy definitions of/reporting of harms), CBT leads to full recovery in CFS (v. dodgy definition of full recovery), etc.

    In this paper, one gets a one-sided view of the evidence, with virtually no mention of any other opinions - the only one that comes to mind is:
    By the end of the paragraph, after quoting Heins study and PACE Trial, he says:
    As well as the one-sided review of the current evidence, one is also given an insight into other research that could be done.
    Not very exciting at all.

    Biology is only mentioned that I can recall in this one-sided paragraph:
    No mention of the fact:

    - de Lange had no control group.

    - This study:
    - Jason studies which found presence of biological abnormalities tended to predict a poor response from non-pharm interventions incl. CBT.

    Even though their review found that CBT patients weren't do more than the controls after CBT, he suggests this might not have been true during therapy:
    There is no talk that if people aren't do any more than controls at the end of treatment, that this is important. And generally no talk of possible problems with outcome measures used.

    All in all, frustrating.
    Tony Mach likes this.
  2. Snow Leopard

    Snow Leopard Hibernating

    South Australia
  3. Firestormm


    Cornwall England
    Thanks Dolphin and Leopard. I was reading this one published yesterday about Pacing from Ellen Goudsmit et al: If you email her you can obtain the full paper.

    I wonder if there will ever be a time when true pacing can be properly compared to the kind of CBT used in PACE: and the kind of GET prescribed in PACE:

    I have still not read the manuals accompanying the PACE Trial to discover exactly what they prescribe in terms of 'treatment'. And I guess we will never really know if every practitioner of CBT and GET adopts the protocols laid out in PACE either will we?

    Personally, I have benefited from psychological interventions that involved CBT but - I am told - this was 'proper' therapy and certainly didn't aim to change my beliefs or get me to do more than I was capable of doing. The intervention and counselling helped me to put everything in perspective - you know trying the live with a chronic condition etc.

    Similarly with 'GET' there are many approaches used throughout physiotherapy and for other neurological conditions e.g. Multiple Sclerosis. Another reason I wanted to read the PACE manuals was to see if their approach fundamentally differed from that I see each week being used to help mobility problems for people with MS.

    Of course, and obviously I recognise, it may be that our condition is fundamentally different from others deemed 'neurological' and that our response to 'exercise' that is enforced and aerobic does indeed affect the condition. That though is something that has yet to be proven and with the present set of criteria being used, I doubt if it ever will.

    Even with a condition like MS for example, Graded Exercise is not deemed applicable to those who are in a severe category. It is all a conundrum isn't it?

    Still I shall read through this CBT paper. Thank you.
  4. biophile

    biophile Places I'd rather be.

    So the usual spin doctoring then?

    I have a few suggestions and not all of them are as polite as Dolphin's.
    Snow Leopard likes this.
  5. Dolphin

    Dolphin Senior Member

    Cognitive Behaviour Therapy seeks to change people's thinking patterns (Cognitive) and behaviour (Behaviour). The form of CBT that was tested in the PACE Trial for example can certainly be called "proper" CBT.

    CBT isn't supposed to be counselling although some practitioners may also use other modalities with their patients including counselling.
  6. Enid

    Enid Senior Member

    Don't tell me this lot are still at it - grovelling around whilst science overtakes them.
  7. Sean

    Sean Senior Member

    Even the whole damn point of a therapeutic trial!

    Well, if you don't consider outcomes to be important then why would you bother with developing and using good quality outcome measures?

    Saves a lot of time and money, and having to take account of all that embarrassing empirical outcomes data.
  8. Esther12

    Esther12 Senior Member

    As with much else in psychiatry/psychology, it seems that there's some controversy and uncertainty here.

    Some think that 'real' CBT can only be applied when distorted cognitions have been identified, and can then be challenged and corrected though cognitive and behavioural techniques. Some think that 'CBT' can just be applied pragmatically to encourage improved outcomes (measured some how or other). I've read some interesting stuff about this as it applies to depression, as often those with depression are not suffering from distorted cognitions, and reality-testing based CBT can be worthless to harmful.

    CBT for CFS is such a quack-fest that these sorts of complications never seem to even get seriously discussed.

    I certainly think that a CBT/mindfulness based approach can be helpful for people dealing with chronic health problems, etc... but I don't trust the NHS to be able to provide it. IMO, it's better to encourage patients to do their own reading, perhaps with others involved to help them talk/think things through. That reduces the danger of quacks manipulating people.

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