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Open Effectiveness of Acceptance Commitment Therapy or Micro Breaks in Patients With Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis

Discussion in 'Recruitment into current ME/CFS research studies' started by Sly Saint, Dec 24, 2021.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Location:
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    Not yet recruiting

    Sarah Schiebler, University of Zurich

    Estimated Study Start Date : January 2022

    Brief Summary:
    Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a distinct disease entity with an estimated prevalence of 0.3-0.7% and more common in women (3:1 ratio). It can be diagnosed according to the Institute of Medicine (IOM) 2015 consensus definition using 3 major criteria and one of 2 minor criteria.

    Diagnosis requires that the patient have the following three symptoms:

    1. A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest,
    2. Post-exertional malaise,* and
    3. Unrefreshing sleep*
    At least one of the two following manifestations is also required:

    1. Cognitive impairment* or
    2. Orthostatic intolerance
    Note* Frequency and severity of symptoms should be assessed. The diagnosis of ME/CFS should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity.

    Currently, individually tailored therapy with emphasis on cognitive behavioral therapy and graduated activity therapy is considered the therapy of first choice, although their effectiveness has been critically questioned in recent years. There are often frustrating treatment courses, a larger proportion of partial remissions, a significantly smaller proportion of full remissions and return to work.

    The study aims to evaluate patients of the outpatient service for chronic fatigue at the Department of Consultation-Liaison Psychiatry and Psychosomatic Medicine, University Hospital Zurich, Switzerland, in the context of a group therapy for the treatment of CFS/ME in respect to the response to different, non-drug based therapeutic procedures and to gain knowledge about the effects of the therapy.

    The study is a clinical comparative study of therapeutic procedures/interventions without the use of drugs or a medical product. The interventions are Acceptance Commitment Therapy (ACT) and Micro Breaks in Everyday Life (MBEL) adapted to CFS/ME. The collection of biological samples (saliva, blood) and health-related personal data (actigraphy, psychometric data from questionnaires) is associated with minimal risks and burdens.

    https://www.clinicaltrials.gov/ct2/show/NCT05168124
     
    Hutan, Simbindi, Helene and 4 others like this.
  2. Kitty

    Kitty Senior Member (Voting Rights)

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    Funny that they don't assess the risks and burdens associated with their 'therapies', isn't it?

    I do hope everyone writes that in red ink all over the bloody questionnaires. In addition, obviously, to enquiring whether all these so-called studies are actually the insurance company equivalent of internet fraudsters' Facebook quizzes, masquerading as medical research.
     
  3. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    Acceptance and commitment therapy sounds to me like "suck it up and get lost" therapy. Alternatively it also sounds "religious" to me i.e. God gave you these burdens to bear and ACT will help you to do it with a big glowing smile on your face like religious paintings of the saints.
     
  4. Mij

    Mij Senior Member (Voting Rights)

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    Exclusion Criteria:

    Insufficient knowledge of German

    Whew. I'm out.
     
  5. rvallee

    rvallee Senior Member (Voting Rights)

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    By way of running this through a Department of Consultation-Liaison Psychiatry and Psychosomatic Medicine, this study would never get more than a tiny % of ME patients, and only get the mildest cases of chronic fatigue sent their way. Unless they completely hide the association, most ME patients would simply refuse to take part.

    In addition to how utterly useless this is to begin with, as if doing this for the 100th time adds anything. Do they not have any self-respect? What is even the point of this? Other, of course, than promoting the mindless nonsense of psychosomatic ideology. Which is of course the only point here. Zero understanding of what they're studying, how could they even interpret anything even if this were useful?
     
    Hutan, FMMM1, alktipping and 6 others like this.
  6. Trish

    Trish Moderator Staff Member

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    This is the description of the micro breaks intervention from the protocol:

    That seems to be designed for people suffering stress at work, not for sick people.
     
    Hutan, bobbler, MEMarge and 18 others like this.
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    ah see, if that were being done in the UK they'd have called it MABEL.

    (micro activity breaks in everyday life?)

    'sorry cant do that right now I'm taking/doing a mabel'.
     
    MEMarge, Louie41, FMMM1 and 15 others like this.
  8. chrisb

    chrisb Senior Member (Voting Rights)

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    Can't think why, but I feel that that spelling of "doing" isn't quite right.
     
    MEMarge, alktipping, Missense and 5 others like this.
  9. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Considered the therapy of first choice by whom?
     
    Hutan, MEMarge, Skycloud and 13 others like this.
  10. cfsandmore

    cfsandmore Senior Member (Voting Rights)

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    Step 1. Accept you have cfs/ME.
    Step 2. Commit to micro breaks.
     
  11. Kitty

    Kitty Senior Member (Voting Rights)

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    :rofl:

    These idiots have never met an ME patient, have they? I mean, not even looked on Twitter.

    If I had to document all the micro-breaks I took in 14 hours awake, it would take days. I've taken three writing this sentence.
     
    Hutan, MEMarge, Louie41 and 20 others like this.
  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I seem to have the Omicron this week.

    Based on what I have heard and what it is like to have omicron, if it were me with ME I couldn't even cope with working out when my next Mabel was.
     
    Hutan, MEMarge, Louie41 and 30 others like this.
  13. Ash

    Ash Senior Member (Voting Rights)

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    :unsure:
    Oh no very sorry to hear that.

    Yeah that experience sounds about right.

    Hope you feel better soon :emoji_four_leaf_clover:
     
    MEMarge, Louie41, Cheshire and 17 others like this.
  14. strategist

    strategist Senior Member (Voting Rights)

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    I'm too ill to stick to most treatment programs anyway, even the simplest ones that just require taking a pill every day for months.

    Sticking to a plan seems to be a kind of repeated exertion for the brain, and like with physical exertion it becomes harder over time, unless it's very rewarding and interesting. Microbreaks are boring and at best pacing under another name. They don't stand a chance.
     
    Last edited: Dec 24, 2021
  15. shak8

    shak8 Senior Member (Voting Rights)

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    My son seems* to have it, too. Congestion! weird stabbing head pain! Since it's the USA, there's nowhere open *to test, no tests available at less than $200 a pop. Someone in his coterie did test positive/timing is apropos.
     
    Hutan, MEMarge, Louie41 and 9 others like this.
  16. Trish

    Trish Moderator Staff Member

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    I hope it's a mild case and over quickly. Let us know how you're getting on.
     
    Hutan, MEMarge, Louie41 and 15 others like this.
  17. Helene

    Helene Senior Member (Voting Rights)

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    @Jonathan Edwards Very much hope you're feeling better soon and still can enjoy Christmas a little bit.
     
    Hutan, MEMarge, Louie41 and 11 others like this.
  18. Sean

    Sean Senior Member (Voting Rights)

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    Seems to be designed to generate income and authority for the therapy industry.
     
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  19. Milo

    Milo Senior Member (Voting Rights)

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    i agree much but there is also the implication that patients can’t work out their own health and they feel the need to manage patients’ activities because seemingly we can never do it right, because if we did we’d all be healthy again.
     
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  20. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    Yea usual crap (maybe not appropriate on the day that's in it) reminds me of @strategist and @Jonathan Edwards comments here* "system that allows even homeopathy to reach the status of evidence based treatment for almost any condition (if sufficiently subjective endpoints are chosen)". The endpoints here are, of course questionnaires** in an unblinded/inadequately blinded study.
    How did this study make it through the University ethics committee i.e. as the endpoints mean that the data is unreliable/unusable and an alternative (reliable) objective outcome indicator is available - Actimetry (FitBit type devices)?

    Does anyone know how to make a compliant to the University etc? @Brian Hughes


    *
    https://www.s4me.info/threads/indep...ed-by-hilda-bastian.13645/page-80#post-390309

    **
    "Primary Outcome Measures :
    1. Fatigue Severity Scale (FSS) [ Time Frame: The entire duration of the study is 3 years. ]
      The FSS comprises 9 questions, by answering which the patient can assess his limitations due to fatigue of the past week on a 7-point scale. The FSS is considered a well-established assessment tool for surveying subjective fatigue, the resulting limitations in daily, social, as well as occupational life and physical activities. Total score 36-52 is indicative of moderate fatigue ("mild/ no fatigue" at FSS total ≤ 35, "moderate fatigue" at 36 ≤ FSS total ≤ 52), score greater than or equal to 53 is indicative of severe fatigue ("severe fatigue" at FSS total ≥ 53)."
    https://www.clinicaltrials.gov/ct2/show/NCT05168124
     
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