Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Long-term follow-up of multi-disciplinary outpatient treatment for CFS/ME (Derby, UK)

Discussion in 'Latest ME/CFS Research' started by Bob, Jan 10, 2015.

  1. Bob

    Bob

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    I think this may be an assessment of NHS specialist outpatient services for ME/CFS in Derby (UK). The supposed 'multidisciplinary' 'treatments' were based on CBT, GET and pacing.


    Long-term follow-up of multi-disciplinary outpatient treatment for chronic fatigue syndrome/myalgic encephalopathy
    Houlton A, Christie MM, Smith B & Gardiner E
    Received: 5 Jun 2014
    Accepted: 18 Nov 2014
    Published online: 07 Jan 2015

    DOI:10.1080/21641846.2014.993873
    http://www.tandfonline.com/doi/abs/10.1080/21641846.2014.993873

    Abstract
    Aims: The current study evaluated the long-term effectiveness of a multi-disciplinary approach to chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) in a UK outpatient service. Methods: A longitudinal questionnaire survey was posted to 300 patients, incorporating measures of fatigue, physical functioning, mental health, and pain. Outcome measures administered at baseline (prior to service use) were compared to assessments at discharge, and at follow-up (average 34 months post-intervention). Results: Linear mixed modelling showed that fatigue, physical functioning, and depression significantly improved, although the improvement was reduced for fatigue, physical functioning, and pain at follow-up. Gainful employment had a significant positive association with most measures. Conclusions: The targeted multi-disciplinary service appeared to be at least somewhat effective long-term, and highly acceptable to patients. Patients appeared to benefit from individual and group approaches that combined cognitive behavioural therapy, graded exercise therapy, and pacing.
     
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  2. Bob

    Bob

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    There is no control group, as far as I understand from the abstract, in which case the outcomes are meaningless.

    It's worth noting that at long-term follow-up (which averaged 34 months post-intervention) there were no significant improvements, from baseline, in fatigue, physical function or pain. (Or, at least, that's my interpretation of the abstract, but their wording is slippery.)

    Where the abstract says: "The targeted multi-disciplinary service appeared to be at least somewhat effective long-term...", this does not apply to measures of fatigue, physical function or pain, if improvements were non-significant. Perhaps it applies to mental health only.
     
    Last edited: Jan 10, 2015
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  3. Esther12

    Esther12 Senior Member

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  4. Bob

    Bob

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    Thanks for that, Esther. I'm not sure if the published PHD is identical to the final version of the published paper.

    For example, the PHD says:
    "The findings were that: fatigue, physical functioning, pain, anxiety and depression measures improved significantly as time increased, with improvements being maintained or increasing at the follow up point."

    Whereas the abstract says:
    "Linear mixed modelling showed that fatigue, physical functioning, and depression significantly improved, although the improvement was reduced for fatigue, physical functioning, and pain at follow-up."
     
    Last edited: Jan 11, 2015
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  5. Esther12

    Esther12 Senior Member

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    Oh yeah.

    Ta Bob, I've not had a close read of either.
     
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  6. Bob

    Bob

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    The PHD (that Esther linked to) says: "When other variables were controlled for, employment had a significant positive impact on levels of fatigue, physical functioning, depression and pain."

    This seems like a slippery conclusion to make. I would have said that levels of fatigue, physical function, depression and pain correlate with levels of employment. Which seems like an obvious outcome!
     
  7. Valentijn

    Valentijn The Diabolic Logic

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    That bit is going to mislead a lot of people. Basically it just means that as pain or fatigue or function questionnaire scores increase, so do employment rates. Or that as the symptoms got worse, there was less employment.

    Since symptoms gains weren't maintained, it means that there wasn't any increase in employment.
     
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  8. Valentijn

    Valentijn The Diabolic Logic

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    It suggests that the review for the thesis was a lot sloppier than the review for the published article. Basically someone at the journal said "no" to the BS attempt, while the PhD reviewers let it slide - or were happy to see it spun to reinforce the beliefs of the PhD reviewers themselves.
     
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  9. A.B.

    A.B. Senior Member

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    Since no control group is mentioned, I'm going to assume that there was none, which means that one cannot draw any conclusions about the effectiveness of therapy as there is quite literally nothing to compare it to.

    Improvements that don't last may simply reflect a placebo effect.

    In typical psychobabbler fashion such details are ignored and wishful thinking does the rest.
     
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  10. Simon

    Simon

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    From the PhD:
     
    Last edited: Mar 27, 2015
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  11. Bob

    Bob

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    @Simon, I'm just going from the abstract but it looks like the follow-up figures must have been amended for the published paper: "...fatigue, physical functioning, and depression significantly improved, although the improvement was reduced for fatigue, physical functioning, and pain at follow-up."
     
    Last edited: Jan 11, 2015
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  12. A.B.

    A.B. Senior Member

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    I'm also wondering how they define GET and pacing, because GET and pacing as I know them are incompatible with each other. In the former, worsening of symptoms in response to increased activity levels is seen as false alarm that must be ignored, while in the latter it is a useful and accurate warning signal. One cannot possible practice both of these at the same time.
     
    Last edited: Jan 11, 2015
  13. Snow Leopard

    Snow Leopard Hibernating

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    The published paper said:


    The slippery part is that we really don't know what effect the intervention had on employment as we don't have the initial figures and the response rate was poor and likely reflects a bias towards those who have higher level of functioning anyway (and hence more likely to be employed).
     
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  14. DaiWelsh

    DaiWelsh

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    I attended an outpatient ME/CFS clinic at Derby. No idea if the treatment I received reflects what they are testing here, as it was a few years ago but fwiw:

    The treatment consisted of about 6 group sessions of an hour or so each where they *talked* to us about various things like pacing, GET, hypnosis and presumably employed CBT on us in the process. It was all very "there is no medical cure, so you need to manage yourselves". It did not include (much of) the "sickness behaviour" rhetoric of the PACE mob but still very much suggested we could think/work/meditate ourselves better if we just kept our chins up ;)

    There has been no follow up at all with me e.g. to find out what if any of the scatter-gun of techniques had helped me or even if I had employed any of them.

    If this is the service they are testing here I am not surprised the results were unimpressive, despite their best efforts to find something positive.

    Ironically for myself (n=1) after attending I realised I could expect no real help from NHS so devised my own coping mechanisms and subsequently managed to get a remote-working job. I assume had they included me in the survey I would have bumped their stats up a little despite the treatment being extremely unhelpful in truth and I am still a long way from healthy.
     
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  15. Dolphin

    Dolphin Senior Member

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    Here are the main results:
    Houlton Table 1.png
     
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  16. Dolphin

    Dolphin Senior Member

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    I think the threshold of 12 (likert scoring) is not correct (or at least I don't recall seeing evidence for it anywhere).
    If anyone does know of evidence, I'd be very interested in having it as the PACE Trial authors used a threshold of 18 for "normal fatigue".
     
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  17. Dolphin

    Dolphin Senior Member

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    Houlton Figure 1.png

    Though they do also say:
    Reminder of what the abstract of Houlton et al says:
     
    Last edited: Mar 26, 2015
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  18. Dolphin

    Dolphin Senior Member

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    So response rate wasn't great.
     
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  19. Dolphin

    Dolphin Senior Member

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    No information on whether working full-time or part-time or the hours worked.
    Also, working in unpaid employment is not the same as paid employment.
     
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  20. Dolphin

    Dolphin Senior Member

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    That's all we really got on that. Perhaps there is more in the PhD.
     
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