A Memoir of Chronic Fatigue Illustrates the Failures of Research

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From The New Yorker: In her new book Through the Shadowlands, Julie Rehmeyer chronicles her struggles with chronic fatigue syndrome, or systemic exertion intolerance disease (S.E.I.D.), and the ways that medicine failed to provide effective treatment.

“Rehmeyer’s writing is full of verve and curiosity, and she’s warmly attuned to how her plight is, in fact, familiar: all of us become weaker as we age, at times gradually and at times suddenly, and along the way we adapt ourselves to fit our diminished capabilities. Still, her story is a biting indictment of how we approach diseases that can’t be reduced to tidy pathologies or a uniform set of symptoms. In a way, science failed Rehmeyer. Years of clinical studies supplied little insight into her affliction, and prescribed therapies had minimal effect. Part of the issue is that S.E.I.D. is a slippery condition with no known cure, but the deeper problem lies in the methodology of clinical trials, and in the premises of evidence-based medicine.”

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  1. May be of interest to some re this post:
    An Acceptance and Commitment Therapy (ACT) intervention for Chronic Fatigue Syndrome (CFS): A case series approach

    http://www.sciencedirect.com/science/article/pii/S2212144717300315

    Highlights
    • Acceptance and Commitment Therapy can improve wellbeing in chronic health conditions.
    • Chronic Fatigue Syndrome is a debilitating and challenging chronic syndrome.
    • We examine guided ACT self-help in a case-series of individuals with CFS.
    • ACT was linked with increased physical activity and valued behavior.
    • Across cases, evidence for effects on psychological flexibility was mixed.

    Abstract

    Objective
    Acceptance and Commitment Therapy (ACT) has been shown to improve the psychological well-being of individuals suffering from a range of chronic health conditions, and aims to increase psychological flexibility in order to foster greater engagement in personally meaningful behavior. We aimed to assess whether the approach (delivered via guided bibliotherapy) may have utility for individuals experiencing the debilitating effects of Chronic Fatigue Syndrome (CFS).

    Methods
    We used a mixed-methods multiple single-case design to explore the effects of a six week self-help ACT intervention for six participants diagnosed with CFS.

    Results
    Significant increases in ratings of valued living were replicated and maintained in four participants, with qualitative data further highlighting the importance of the values component of the intervention. Acceptance scores improved in four participants but were not maintained at follow-up, whereas improvements in psychological flexibility were observed and maintained for three participants. All participants wearing an activity monitor evinced increased physical activity postintervention, which was maintained at follow up in half of the participants.

    Conclusion
    The ACT self-help intervention appeared to benefit most participants on at least one assessed metric, particularly in terms of the promotion and pursuit of individual values, and increased physical activity. However, the results suggest these benefits may be difficult to maintain longer term without further input.

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  3. I wonder why CFS/SEID are cropping up all over recently. I think they may be iatrogenic in origin or caused by chemical poisonings in our modern environment. A lot of folks with CFS started out with “depression” or other psych diagnoses. After going off my psych drug Effexor I feel sick all the time too–symptoms similar to CFS or SEID.

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