tomkindlon , to longcovid group
@tomkindlon@disabled.social avatar

🧵
It's 5th anniversary of our paper

"Monitoring treatment harm in / : A freedom-of-information study of NHS specialist centres in England"
https://journals.sagepub.com/doi/10.1177/1359105319854532

Hopefully it will influence, among other things, clinics

@mecfs

@longcovid
@b_m_hughes

1/n

Abstract The use of graded exercise therapy and cognitive behavioural therapy for myalgic encephalomyelitis/chronic fatigue syndrome has attracted considerable controversy. This controversy relates not only to the disputed evidence for treatment efficacy but also to widespread reports from patients that graded exercise therapy, in particular, has caused them harm. We surveyed the National Health Service–affiliated myalgic encephalomyelitis/chronic fatigue syndrome specialist clinics in England to assess how harms following treatment are detected and to examine how patients are warned about the potential for harms. We sent 57 clinics standardised information requests under the United Kingdom’s Freedom of Information Act. Data were received from 38 clinics. Clinics were highly inconsistent in their approaches to the issue of treatment-related harm. They placed little or no focus on the potential for treatment-related harm in their written information for patients and for staff. Furthermore, no clinic reported any cases of treatment-related harm, despite acknowledging that many patients dropped out of treatment. In light of these findings, we recommend that clinics develop standardised protocols for anticipating, recording, and remedying harms, and that these protocols allow for therapies to be discontinued immediately whenever harm is identified.
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    • tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    2/

    Summary article for laypeople: "Trial By Error: NHS ME/CFS Clinics Lax on Treatment Harms, Study Finds" (June 2019)

    https://virology.ws/2019/07/16/trial-by-error-nhs-me-cfs-clinics-lax-on-treatment-harms-study-finds/


    @mecfs @longcovid @b_m_hughes @david

    tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    3/

    I searched but couldn't find a legal copy online of "Monitoring treatment harm in / ..." that others can access so I uploaded here https://www.researchgate.net/publication/334005289_Monitoring_treatment_harm_in_myalgic_encephalomyelitischronic_fatigue_syndrome_A_freedom-of-information_study_of_National_Health_Service_specialist_centres_in_England
    what we submitted to the journal which is something we own the copyright on.

    @mecfs @longcovid @b_m_hughes

    tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    4/

    A webpage with a thread of tweets on the paper "Monitoring treatment harm in / : A freedom-of-information study of NHS specialist centres in England" from @mecfsskeptic

    https://threadreaderapp.com/thread/1144264687917424642.html

    @mecfs @longcovid @b_m_hughes

    tomkindlon , to longcovid group
    @tomkindlon@disabled.social avatar

    🧵
    "ME/CFS Isn't Just Misunderstood, It's Actively Neglected"

    https://www.popsugar.com/fitness/mecfs-post-covid-49344168

    'Beth Pardo is among the people who developed ME/CFS after contracting COVID.' 'Pardo went from running ultramarathons to being unable to leave her bed'

    @mecfs

    @longcovid

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