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Guided Self-Help for Patients with CFS Prior to Starting CBT: a Cohort Study

Discussion in 'Latest ME/CFS Research' started by hixxy, May 7, 2017.

  1. hixxy

    hixxy Senior Member

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    Behav Cogn Psychother. 2017 May 5:1-19. doi: 10.1017/S135246581700025X. [Epub ahead of print]

    Guided Self-Help for Patients with Chronic Fatigue Syndrome Prior to Starting Cognitive Behavioural Therapy: a Cohort Study.

    Ali S, Goldsmith K, Burgess M, Chalder T.

    Abstract

    BACKGROUND:
    Previous research suggests that minimal interventions such as self-help guidance can improve outcomes in patients with fatigue or chronic fatigue syndrome (CFS).

    AIMS:
    The aim of the current study was to investigate whether self-help guidance could improve physical functioning, social adjustment and fatigue in a group of patients with CFS who were awaiting CBT at a clinic in secondary care.

    METHOD:
    Patients completed questionnaires at their initial assessment (baseline), immediately before beginning CBT (pre-treatment), and after their last session of CBT (end of treatment). The primary outcome was physical functioning, and the secondary outcomes were social adjustment and fatigue. Multi-level linear models were used to assess change over time after adjustment for gender and age.

    RESULTS:
    Multi-level models revealed that from baseline to pre-treatment, patients showed statistically significant improvements in physical functioning, but there were no statistically significant improvements in fatigue or social adjustment. However, all the primary and secondary outcomes showed statistically significant changes after CBT.

    CONCLUSIONS:
    The findings of this study indicate that self-help guidance may be beneficial for patients with CFS who are awaiting CBT treatment or those who are unable to access specialist treatment in their local area.

    KEYWORDS:
    CBT; CFS; Chronic fatigue syndrome; fatigue; minimal intervention; self-help

    https://www.ncbi.nlm.nih.gov/pubmed/28473005
    https://www.cambridge.org/core/jour...cohort-study/3063BD34233F95C84F630297C5C300FF
     
  2. Hutan

    Hutan Senior Member

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    I haven't seen the full paper.

    But duh, presumably no controls for the CBT bit at least. And if there was a control group that didn't get the self-help guidance, then why is no comparison made with that control group in the abstract? The only modelling of variables mentioned is against time i.e. a comparison against baseline and the start of the CBT for the treated group.

    Who knows what the trajectory of these people's health and well-being would have been without any intervention? It's notable that the people had 'fatigue or Chronic Fatigue Syndrome'. And yet the title just mentions Chronic Fatigue Syndrome.
     
  3. alex3619

    alex3619 Senior Member

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    More poor methodology. I do understand that with limited budgets then choices have to be made as to what to include in a study. However I am getting to the point where I always want to see objective outcome measures, always. They are a check on the subjective measures. I suspect many of these kinds of approaches fail to produce any positive objective outcome, which is why they avoid objective measures like they were anthrax or something. Yet without objective confirmation I would say we should consider such studies to be below what is an acceptable standard.

    I would add the caveat that a small pilot study might use limited outcome measures, but any larger study should be considered substandard without them.

    For ME the minimal objective outcome would currently be continuous assessment by actometers. With a bigger budget you can add pre- and post-treatment two day CPET, at least for mild patients. I am not sure how useful actometers would be for severe and very severe patients. Actometers do have the advantage that they are much less likely to make patients worse, unlike CPET.

    I am hoping more effective outcome measures will be discovered as the research advances.

    Questionnaires should be strictly secondary outcome measures, to give increased data on what might be happening. They do not appear to correlate well with real outcomes in ME or even CFS.

    I also think its mandatory to measure long term outcomes, at several time points. PACE, for example, showed regression to the mean, which is typical of results due to methodological bias.

    I think we need to be considering developing research standards for ME research, in collaboration with actual researchers, and auto-failing any study that does not use them ... in other words, declare such studies to be substandard. Researchers can choose to develop and use standards, we should not wait for any government agency. However I am well aware that with the many biomarkers under investigation we might not be able to develop stable standards for some time.
     
    Last edited: May 8, 2017
  4. Sean

    Sean Senior Member

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    Studies lacking sufficient statistical power, and either objective outcomes or properly blinded subjective outcomes, simply should not get past the funding stage, let alone final peer-review.

    I am hardcore on this issue now. The evidence is beyond doubt: Anything less than that standard is completely unacceptable, and will only lead to hopelessly biased 'research'.
     
  5. Forbin

    Forbin Senior Member

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    I wonder what would happen, in a test like this, if all the patients were told that only half of them would receive a form of CBT under investigation and the other half would receive a form of CBT known to be ineffective against CFS.

    Patients could not be sure which "type" of CBT they were getting, the investigative form or the useless form, but, in reality, they'd all be getting the investigative form.

    I'm suggesting that this uncertainty might dampen the placebo effect.

    The question would then be whether the result would differ from a trial where everyone was correctly told that they were getting the investigative form.

    Deception like this is pretty routine in general psychological studies of healthy subjects, but I wonder if it would be considered unethical when the subjects have a medical condition.
     
  6. Skippa

    Skippa Senior Member

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    Uninformed patients, just got ill or just been diagnosed, now been offered hope and treatment after previously recieving none...

    Read this documentation, full of hope, before we treat you properly... now... do you feel better?

    Yes! The message of hope and being listened to has given me hope that therapy will be good.

    Conclusion: CBT and pre-CBT messages are helpful.
     
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  7. Dolphin

    Dolphin Senior Member

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    The analysis only included people who went on to be diagnosed with CFS. This is clear in the full text and Figure 1, which I know you had not read.
     
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  8. Dolphin

    Dolphin Senior Member

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    Yes indeed. Though in this case it was reviewing current practice so little money would have been required.
     
  9. Dolphin

    Dolphin Senior Member

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    So of the three measures, guided self-help only showed an improvement on one, the SF-36 physical functioning subscale.

    The magnitude of the improvement was quite small, 2.7 points (the scale is 0-100).

    As has been mentioned, there is no control group so we don't know whether some of the people might have improved by this little bit themselves during this period without any intervention.

    There were more substantial improvements between pre--CBT and post-CBT but as has been mentioned this study relied solely on subjective outcome measures which may not be that reliable for research on CBT for CFS.

    I don't believe this say in what way does variables affect the results.
     
    Last edited: Jul 21, 2017
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  10. Dolphin

    Dolphin Senior Member

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    I dislike this point of view. The fatigue in ME/CFS is also of a different quality to that experienced by healthy people e.g. the postexertional exacerbation and the different symptoms involved.

    http://www.dsq-sds.org/article/view/938/1113

     
  11. Dolphin

    Dolphin Senior Member

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    Minor points:
    Not everyone agrees that fatigue is the primary symptom of CFS. Most people do not agree that the prevalence of CFS is as high as 2.6%.
     
  12. Dolphin

    Dolphin Senior Member

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    I don't know what the evidence is for this statement?
     
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  13. Dolphin

    Dolphin Senior Member

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    Minor point:
    I dislike the claim that what is offered in the UK services is "treatment [people with CFS] need"
     
  14. Dolphin

    Dolphin Senior Member

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    Minor point:
    I have little confidence information they give about maintaining factors of fatigue will be 100% accurate for CFS. Nor have I confidence in their ability to decide which thoughts are helpful and which thoughts are unhelpful
     
  15. Sean

    Sean Senior Member

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    Yeah, it interesting how much they assume about their knowledge and its superior status.
     
  16. Dolphin

    Dolphin Senior Member

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    I wish they would say improvements in *self-reported* physical functioning. They say this numerous times both in regard to this study and other evidence.
     
  17. Dolphin

    Dolphin Senior Member

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    I would be very suspicious they decided this after seeing the results.
     
  18. Dolphin

    Dolphin Senior Member

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    This is what the material focused on:
     
  19. Dolphin

    Dolphin Senior Member

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    More on the therapeutic approach:
     
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  20. Dolphin

    Dolphin Senior Member

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    Here's some information on the criteria that the participants satisfied. All had to meet the NICE criteria. The study is not that interesting perhaps but this may give an idea of the sorts of people seen in the English clinics:
     

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