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Managing Energy, and Shaping Care: Insights from Adults with [ME/CFS] Through Co-Production Workshops, 2025, Thornton+

Discussion in 'ME/CFS research' started by Nightsong, Feb 16, 2025.

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  1. Nightsong

    Nightsong Senior Member (Voting Rights)

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    Background
    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, debilitating condition characterised by severe fatigue that is not relieved by rest and is often exacerbated by physical or mental activity. A key challenge for individuals with ME/CFS is energy management and to date, the only recommended strategy is "activity pacing." This approach involves balancing activity and rest to avoid overexertion and minimise the risk of symptom exacerbation, commonly known as "post-exertional malaise"(PEM). A recent systematic review highlighted significant shortcomings in activity pacing interventions for ME/CFS, noting that they lacked rigour, were brief, and did not follow guidelines or integrate recommended technology, limiting their relevance for modern energy management. To address these gaps, the present study aimed to explore ME/CFS patients’ and health practitioners’ perspectives on approaches to energy management, how their understanding of energy management has evolved over time, and their recommendations for future interventions concerning energy management.

    Method
    Eight individuals with ME/CFS participated in six one-hour long online co-production workshops with two researchers, with the option to provide input through written responses. Additionally, three health practitioners shared their perspectives via email. Thematic analysis of the data identified several key recommendations for improving ME/CFS care.

    Results and conclusions
    Workshops highlighted the need for early support, healthcare provider training, and public education to combat stigma and misconceptions around ME/CFS. Participants emphasised patient collaboration, research-informed practices, rigorous research, multidisciplinary teams, and the integration of technologies like mHealth, along with a comprehensive approach including sleep, diet, and psychological support for better symptom management and activity pacing.

    Link (Am J Med, February 2025)
     
    Nightsong, Feb 16, 2025
    #1
    bobbler, Peter Trewhitt, hibiscuswahine and 2 others like this.
  2. Sean

    Sean Moderator Staff Member

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    A recent systematic review highlighted significant shortcomings in activity pacing interventions for ME/CFS, noting that they lacked rigour, were brief, and did not follow guidelines or integrate recommended technology, limiting their relevance for modern energy management.

    And then proceeds to give the evidence-free recommendation for "multidisciplinary teams,... ...a comprehensive approach including sleep, diet, and psychological support for better symptom management and activity pacing."

    It just gets clearer with almost every single paper on ME/CFS that the one thing that is strictly verboten in medicine is to say 'we don't know'.
     
    Sean, Feb 16, 2025
    #2
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  3. Utsikt

    Utsikt Senior Member (Voting Rights)

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    @Sean in all fairness, they do say that it was the participants that emphasized it. So they are open about the fact that it’s just an opinion of some people.
     
    Utsikt, Feb 16, 2025
    #3
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  4. Sean

    Sean Moderator Staff Member

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    Point taken.

    OTOH, it is the responsibility of the pros to do robust assessments. I don't take what patients say at face value either. I have learned the hard way how easily we all can fool ourselves. Me included.
     
    Sean, Feb 16, 2025
    #4
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  5. Utsikt

    Utsikt Senior Member (Voting Rights)

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    100 %.

    They should probably have been clearer about the low evidence value in the abstract.
     
    Utsikt, Feb 16, 2025
    #5
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  6. Trish

    Trish Moderator Staff Member

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    I'm guessing this is a student project. It's too small and inconsequential to be serious paid for research.
     
    Trish, Feb 16, 2025
    #6
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  7. Utsikt

    Utsikt Senior Member (Voting Rights)

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    Utsikt, Feb 16, 2025
    #7
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  8. Hutan

    Hutan Moderator Staff Member

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    Just noting that the participants were 8 people with ME/CFS and 3 health practitioners.
    So, some or all of that may have been coming from the 'health practitioners' (whatever they are, presumably part of a multidisciplinary team, or happy to offload their difficult patients to such a team).

    (Of course, there's a paywall, so most people will just assume it's the patients who wanted all of that multidisciplinary team stuff.)
     
    Hutan, Feb 16, 2025
    #8
    bobbler, alktipping, Sean and 2 others like this.

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