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Patient's experiences and effects of non-pharmacological treatment for ME/CFS - a scoping mixed method review - 2020 - Mengshoel et al

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Kalliope, May 20, 2020.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    International Journal of Qualitative Studies on Health and Wellbeing
    Patient's experiences and effects of non-pharmacological treatment for myalgic encephalomyelitis/chronic fatigue syndrome - Anne Marit Mengshoel, Ingrid B. Helland, Mira Meeu, Jesus Castro-Marrero, Derek Pheby & Elin Bolle Strand

    Results

    Effect studies addressed cognitive behavioural therapy (CBT, n = 4), multimodal rehabilitation (n = 2) and activity-pacing (n = 2). CBT reduced fatigue scores more than usual care or waiting list controls. The effects of rehabilitation and activity-pacing were inconsistent. The contents, assessment methods and effects of rehabilitation and activity pacing studies varied. For patients, health professionals’ recognition of ME/CFS and support were crucial, but they expressed ambiguous experiences of what the NPTs entail.

    Conclusions
    Methodological differences make comparisons across NPTs impossible, and from a patient perspective the relevance of the specific contents of NPTs are unclear. Future well-designed studies should focus on developing NPTs tailored to patients’ concerns and evaluation tools reflecting what is essential for patients.
     
    Sly Saint, Barry, Joh and 4 others like this.
  2. alktipping

    alktipping Senior Member (Voting Rights)

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    after reading their methods choice for inclusion gigo .
     
    rvallee, MEMarge and strategist like this.
  3. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Andy likes this.
  4. Kalliope

    Kalliope Senior Member (Voting Rights)

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  5. Esther12

    Esther12 Senior Member (Voting Rights)

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    The involvement of people like Helland and Strand seems like a consistently bad thing for patients. They seems pretty committed to not thinking critically, even when it comes to things like the Lightning Process.
     
    Robert 1973, alktipping, inox and 7 others like this.
  6. cassava7

    cassava7 Senior Member (Voting Rights)

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    A sweep through the paper in the tweets below.

    In short there is critical thinking about the methodological issues but they’re all jammed together at the end, so in the rest of the paper (including all the analysis) they’re either downplayed or not taken into account. So the paper’s own conclusions are flawed due to the very issues it reports. Not sure how it got through peer review, but perhaps my expectations are too high for the “International Journal of Qualitative Studies on Health and Well-being”.

    One of the conclusions is that “CBT reduces fatigues” despite subjective outcome measures with positive bias & different delivery methods (lack of consistency and replicability). The paper also concludes that “CBT increased school attendance”, after a short review of 5-6 lines of one single study of which they don’t question the methodology nor analyze other factors that likely contributed to this “improvement” (the measure of school attendance is not reported: hours/week? weekly visits at school?).

    They also say that other systematic reviews on CBT in CFS all found a positive effect (without long-term follow-up) despite varying diagnostic criteria, so the diagnostic criteria can’t be a factor. But none of the criteria required PEM, so the positive effect, if even relevant/correctly measured, may have been caused by patients without ME but rather idiopathic chronic fatigue or a psychological condition.

    As for activity pacing, the studies they looked at found no improvement. Do they realize the goal of pacing is not to improve function, fatigue or pain but rather to prevent worsening? Omitting this key point makes pacing appear to be useless and that’s extremely dishonest, not to say harmful.

    Despite “qualitative analysis” reports of harm from GET are not mentioned at all. LP is mentioned shortly but in what seems like a neutral way.

    https://twitter.com/user/status/1263322658982281217
     
    Last edited: May 21, 2020
  7. strategist

    strategist Senior Member (Voting Rights)

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    What a disappointment. If EUROMENE doesn't address the causes of such a poor review I don't see much future for it to be honest. It seems to be used by CBT and LP enthusiasts to uncritically spread misleading and dubious claims.
     
  8. spinoza577

    spinoza577 Senior Member (Voting Rights)

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    A sequence that especially shows unwillingness:

    It´s almost magic, also that unknowns and knowns are muddled up by ...

    Which facts?

    Did anybody show any psychological property that PwME had in common? Any history, any kind of expectation, any whatever?

    Or do we explain illnesses now with common properties?

    Outstanding, almost a proof that something is wicked here.

    Profound knowledge and wisdom here.

    But sadly also this is no treatment, why?


    It´s only words what they do, there is no understanding and reasoning on the structure of symptoms and onset. Consequently it´s only words, as well, to them what the patients say.
     
    Last edited: May 21, 2020
    alktipping, rvallee, MEMarge and 4 others like this.
  9. Milo

    Milo Senior Member (Voting Rights)

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    I am not bothering to read the paper, but I have a comment on non-pharmacologic treatments of illnesses in general. What is considered non-pharmacologic? Physiotherapy, CBT, alternative medicines, supplements, coping, that sort of thing. Would these modalities be recommended as main treatment of any other disease? I know some will squeak, but my answer is no. Every other disease have pharmacological treatment. The answer should not be to continue researching further into non-pharmacological treatment because it perpetuates the idea that our disease is not worthy of pharmacological treatment, and biomedical research and the highest standards of clinical trials. I am so frustrated. We deserve more than this, and we deserve not to delve any further into more research of our experience of the non-pharmacological effect.

    Pardon my rant.
     
  10. Trish

    Trish Moderator Staff Member

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    This is their description of pacing:
    Really? Patients recover? Avoidance behaviour? Graded activity?

    And on recovery:
    Yuck! What about recovery meaning being able to do the sort of normal things healthy people your age can do? And able to do them without ill effects? What about recovery meaning you actually feel well for the first time for x years?
    That word salad sounds to me like blame the patient if they refuse to agree they have 'recovered' and patronise them by telling them small random improvements are 'recovery'.

    They said they would include studies that used CCC, ICC or Fukuda criteria, but it looks like the only studies they found all used Fukuda. So although they defined ME/CFS at the start as including PEM, they actually only looked at studies using Fukuda that focuses on fatigue lists PEM as optional.

    And as far as I can see the only study that looked at Pacing assessed effectiveness after 3 weeks! There was also a self management program that was no better than usual treatment controls on SF36PF after a year.

    The section on patient's experiences is quite revealing I think:

    That reads to me as:
    The treatments being offered don't actually work, but if you join in the game and like your therapist because she's nice to you, you will also go along with their nonsensical definition of recovery, and fill in the questionnaires 'correctly' so the therapists can go on pretending their treatments work.

    On the other hand if you don't get better, it's because you refused to play the game and went on stubbornly insisting you have a physical illness, it's your fault.

    Can anyone make any sense of the bit I've highlighted in bold? It seems to be saying people who think their ilness is physical will be made worse because they will be told to exercise???

    What the hell does 'recovery work' mean in this context? I do wish they wouldn't pretend they can 'explain the symptoms' and that if we just accept we need to slow down, we will be on the road to recovery. If only.

    Oh, and to cap it all they report that patients treated with LP reported
    Aren't they aware that this is what LP participants are told they have to say or they won't get better. How can they possibly take such stuff at face value? (they did report some negatives about LP too).
     
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  11. Trish

    Trish Moderator Staff Member

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    I agree with @Milo. These are not 'treatment' in the normal meaning of the word. At best they are recognition that we are ill and some help with managing our new reality. At worst they are patient blaming harmful nonsense.
     
  12. Sean

    Sean Senior Member (Voting Rights)

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    They are still stuck in the 'it's just the sales pitch that needs tweaking' phase of denial.

    We have a long way to go. :grumpy:
     
  13. cassava7

    cassava7 Senior Member (Voting Rights)

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    The odd thing is that many pharmacological treatments are available for psychological conditions -- they even are the most prescribed drugs in the world --, yet none exist for the organic disease that is ME.
     
  14. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    This is EUROMENE Specific Objective statement:

    So they are right on target for their own agenda.

    Nothing good was ever going to be on offer here. Only the same old same old. Everything they said is old conclusions recycled to death.

    As a person for whom they are meant to be working on my behalf I say DISBAND. Disbanding is the most useful thing they could accomplish. Go find something else to do. Maybe something halfway useful.

    @Milo pretty much nails it. The thing we need is the thing most avoided.
     
    alktipping, Trish and MEMarge like this.
  15. dave30th

    dave30th Senior Member (Voting Rights)

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    I don't get how anything Helland is involved with could be worthwhile, given the stupid things she said in the Norwegian articles.
     
    EzzieD, rainy, Sean and 7 others like this.
  16. Barry

    Barry Senior Member (Voting Rights)

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    So these crazy pwME are both overexerting whilst at the same time also avoiding exercise! No wonder psychiatrists find them so interesting.
     
  17. rvallee

    rvallee Senior Member (Voting Rights)

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    Such "treatments" have officially been in clinical use for 2 decades in Australia, over a decade in the UK and many years in other countries. What. Are. The. Outcomes? Why examine the experiences of clearly useless and baseless pseudoscience mumbo jumbo? Especially as it's clear from those experiences that the whole thing is a pointless waste of resources.

    I really can't begin to see what point there is to this study. Very disappointing, this is Chalder level bad. EUROMENE have proven themselves to be useless.

    Looking at the website I don't know who is the point of contact: http://www.euromene.eu/index-4.html. Who do we talk to about this?
     
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  18. Trish

    Trish Moderator Staff Member

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    This reminds me when the CMRC was set up and for most of its existence it deliberately included the BPS people as well as biomedical, pretending this was worth doing to cover all aspects of ME research. Inevitably the BPS people got the upper hand and came up with the unacceptable proposition that one of them should be in charge of a genome study.

    What we need if we are to move forward in Europe with ME research umbrella organisations is recognition that BPS has no place in ME research, that all the BPS crowd's studies are unworthy of the name science and have no objectively useful outcomes. Such people should be shut out of ME research and research organisations to stop them polluting what might otherwise be worthwhile collaboration.
     
    EzzieD, Mithriel, Sean and 3 others like this.
  19. Esther12

    Esther12 Senior Member (Voting Rights)

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    It depends what is meant by 'BPS people'. If there were decent BPS researchers who had taken the time to really think about the research, and had a record of pointing out the problems with PACE, SMILE, etc then I can see that including them could have value. That's very different to including someone like Helland.
     
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  20. Trish

    Trish Moderator Staff Member

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    Yes sorry, I meant the ones who do the junk research like PACE SMILE etc.
     

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