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Testing a newly developed activity pacing framework for chronic pain/fatigue: a feasibility study, Antcliffe et al 2021

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Haveyoutriedyoga, Dec 8, 2021.

  1. Haveyoutriedyoga

    Haveyoutriedyoga Senior Member (Voting Rights)

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    Testing a newly developed activity pacing framework for chronic pain/fatigue: a feasibility study

    Antcliffe et al 2021

    BMJ Open

    Abstract

    Objectives
    To test the feasibility of using a new activity pacing framework to standardise healthcare professionals’ instructions of pacing, and explore whether measures of activity pacing/symptoms detected changes following treatment.

    Design
    Single-arm, repeated measures study.

    Setting
    One National Health Service (NHS) Pain Service in Northern England, UK.

    Participants
    Adult patients with chronic pain/fatigue, including chronic low back pain, chronic widespread pain, fibromyalgia and chronic fatigue syndrome/myalgic encephalomyelitis.

    Interventions
    Six-week rehabilitation programme, standardised using the activity pacing framework.

    Outcome measures
    Feasibility was explored via patients’ recruitment/attrition rates, adherence and satisfaction, and healthcare professionals’ fidelity. Questionnaire data were collected from patients at the start and end of the programme (T1 and T2, respectively) and 3 months’ follow-up (T3). Questionnaires included measures of activity pacing, current/usual pain, physical/mental fatigue, depression, anxiety, self-efficacy, avoidance, physical/mental function and quality of life. Mean changes in activity pacing and symptoms between T1-T2, T2-T3 and T1-T3 were estimated.

    Results
    Of the 139 eligible patients, 107 patients consented (recruitment rate=77%); 65 patients completed T2 (T1-T2 attrition rate=39%), and 52 patients completed T3 (T1-T3 attrition rate=51%). At T2, patients’ satisfaction ratings averaged 9/10, and 89% attended ≥5 rehabilitation programme sessions. Activity pacing and all symptoms improved between T1 and T2, with smaller improvements maintained at T3.

    Conclusion
    The activity pacing framework was feasible to implement and patients’ ability to pace and manage their symptoms improved. Future work will employ a suitable comparison group and test the framework across wider settings to explore the effects of activity pacing in a randomised controlled trial.

    https://bmjopen.bmj.com/content/11/12/e045398?rss=1
     
    Michelle, oldtimer, MEMarge and 2 others like this.
  2. strategist

    strategist Senior Member (Voting Rights)

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    A rehabilitation program is not pacing by definition. Can we please stop pretending that some behavioural changes could plausibly and realistically lead to a recovery of function in the high-impact chronic illness that we call ME/CFS?
     
  3. Haveyoutriedyoga

    Haveyoutriedyoga Senior Member (Voting Rights)

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    It's not really pacing as we know it. Screenshot_20211208-182421_Adobe Acrobat~2.jpg
     
    Michelle, oldtimer, Lilas and 12 others like this.
  4. CRG

    CRG Senior Member (Voting Rights)

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    Words, as Humpty Dumpty said are all about who is master: WHO = Rehabilitation is defined as “a set of interventions designed to optimize functioning and reduce disability in individuals with health conditions in interaction with their environment”.
     
    Michelle, oldtimer, FMMM1 and 6 others like this.
  5. Mij

    Mij Senior Member (Voting Rights)

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    6,249
    Which symptoms 'improved'? They are combing FM and ME as one in these interventions. I have/had 2 friends with fibro, and mild exercise/movement improved their pain, they did not have PEM.
     
  6. alktipping

    alktipping Senior Member (Voting Rights)

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    1,116
    the desire of institutions to have a one size fits all approach in order to achieve cost savings. makes it impossible to actually serve anyone effectively . people are not objects that fit neatly into a one size fits all category .
     
    Michelle, oldtimer, Lilas and 8 others like this.
  7. rvallee

    rvallee Senior Member (Voting Rights)

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    Can't we just give all the funding that goes to this junk directly to patient groups or something? These people are completely confused about everything and just wasting everyone's time with their crap. And it's not improving with time. If they can't understand that pacing is not a treatment and that it's the exact opposite of what rehabilitation is there's just no point to any of this.

    Oh, sure, you developed a novel pacing framework. Good for you, you made this. Pfffft.

    [​IMG]
     
  8. Sean

    Sean Senior Member (Voting Rights)

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    Word salad as therapy. Discuss.

    They are just playing the old game of changing labels without any significant change to their underlying beliefs about us and how to 'manage' us.
     
    Michelle, oldtimer, shak8 and 12 others like this.
  9. inox

    inox Senior Member (Voting Rights)

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    This isn’t pacing. It’s cbt/get combined in one single framework, presented as ‘pacing’
     
    oldtimer, TigerLilea, Wonko and 11 others like this.
  10. Trish

    Trish Moderator Staff Member

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    42,163
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    UK
    This should not be allowed under the new NICE guideline. It's GET, with all the usual worst CBT features. Only 12 patients with CFS were included, and half of them dropped out. They must have been very mild cases to be able to participate in weekly 3.5 hour sessions.
     
    Michelle, oldtimer, Lilas and 18 others like this.
  11. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Yeah, it's GET+CBT-F.
     
    oldtimer, ukxmrv, Wonko and 12 others like this.
  12. rvallee

    rvallee Senior Member (Voting Rights)

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    Kind of looks like APT from PACE, actually.
     
  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Feasible to implement seems a bit optimistic if half of those who agree to start give up.
     
  14. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    @Snow Leopard made a similar suggestion some time ago --- yea, well healed, healthy, individuals being funded to do pointless (or worse) research --- why not just give the money to the patients?

    I see they are still sticking to subjective outcome indicators (questionnaires). Published in the BMJ ----. Who funded this?
     
    oldtimer, MEMarge, alktipping and 5 others like this.
  15. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    The wording could have been a bit more original?

    newly developed (actually stale as week-old coffee)
    activity pacing (ever-so-sweetly forced labour)
    framework (minestrone)
    for chronic pain/fatigue (whatever, who cares?)
    a feasibility (post-pre-post hoc pragmatic even) study,...





     
    Michelle, Helene, oldtimer and 10 others like this.
  16. Sean

    Sean Senior Member (Voting Rights)

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    Which is interesting given that BPSers are increasingly arguing for 'individualised treatment plans'.
     
  17. rvallee

    rvallee Senior Member (Voting Rights)

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    That's why one major component is pushing the apps and virtual programs. Which completely removes the individualisation, and shows that "training" the therapists is essentially useless, a pamphlet is equivalent (to zero). But they argue for both anyway, and everything in-between. Even though the only point is cost-saving, and so the programmable stuff is what most will get.

    They never really thought this through. It's arguing for boilerplate standardization that is also fully individualized, like a fully automated industrial process that produces hand-made bespoke artisan products, complete nonsense. The contradictions are irrelevant, doublethink takes care of that. It doesn't even matter that none of this scales, even for PACE they recognized that it would be impossible to deliver this in practice, even if it worked, the economics of this are ridiculous. None of this is supposed to make sense, it's astrology for physicians.
     
    CRG, Sean, alktipping and 4 others like this.
  18. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    At the NICE roundtable one of the Royal College reps raised the issue that nobody did GET any more and that it was now individualised treatments that did not involve the bad things in official GET. A representative of a patient support group (a medical expert) pointed out that however much this might be the case patients are are still being expected to undergo incremental exercise and ending up feeling much worse. I concurred.

    The therapists need to be on their best behaviour here. The NICE committee bent over backwards to allow that things may have changed and that therapists are now enlightened and want to discard unproven incremental exercise programmes designed to make people better.

    This article shows that this is very far from universally the case. There is a total lack of insight in this paper into the reasons why GET was de-recommended and why it should have been.
     

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