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Dr David Tuller:UK Docs Speak Up on Long-Covid; Mayo Shifts Gears (a Little)

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https://www.virology.ws/2020/09/15/...ikK6v8rnlW28YQWLv7UwzoMS58NuGcnj-Yp8Jm6Mmuq8A

Trial By Error: UK Docs Speak Up on Long-Covid; Mayo Shifts Gears (a Little)

15 SEPTEMBER 2020

By David Tuller, DrPH

Doctors in UK urge caution on long-Covid exercise advice
Despite BMJ’s current dereliction of key editorial oversight responsibilities, it has provided a forum for members of the medical community with Covid-19 and post-Covid symptoms to express their strong views.

The reference to current dereliction of key editorial responsibilities involves a case I and others have raised repeatedly with BMJ in recent months. The concerns relate to a study of cognitive behavior therapy and music therapy for chronic fatigue in adolescents after acute EBV, which was published in April by BMJ Paediatrics Open. More than three months ago, four colleagues and I alerted the journal itself, along with BMJ’s editorial leadership, that one of two peer reviewers flatly stated in his review that he had not read “beyond the abstract”—in other words, he did not actually read the study.
Even before we sent our letter, a sharp ME/CFS patient had previously highlighted multiple methodological problems with the paper in a cogent and persuasive rapid response. Among other issues, the study was described in the protocol as a fully powered trial but it was published—falsely—as if it were designed as a feasibility study seeking data for a fully powered trial
Putting aside that issue for the moment, BMJ deserves credit for posting physician Paul Garner’s series on his personal journal of illness and his struggle to recover. BMJ has now posted a letter headlined “From doctors as patients: a manifesto for tackling persisting symptoms of covid-19.”

The letter does not explicitly mention the symptom of post-exertional malaise, although it draws attention to cardiac inflammation among long-Covid patients. Appropriately, the letter warns against a uniform approach to treatment and sounds a welcome cautionary note on the role of exercise. In particular, it references the statement from the National Institute of Health and Care Excellence, which advised that the standing guidance for GET in ME/CFS should not be assumed to apply for post-Covid symptoms:

“A reliance on “one size fits all” online rehabilitation services risks serious harm to patients if pathology goes undetected and is a missed opportunity for clinicians to develop their experience with the sequelae of this virus that is set to be an ongoing presence in our clinical practice. Where current guidance has been issued, such as the statement from the National Institute for Health and Care Excellence cautioning against graded exercise therapy in the context of covid-19, it should be communicated quickly to clinicians on the front line.”

The whole thing is well worth reading.
 

Abrin

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"We argue that this means accepting an emerging picture that prolonged symptoms are having a substantial impact on a significant minority of people and acknowledging that death is not the only outcome to measure. "

I am trying really to be empathetic to the awfulness that those doctors are going though but truth be told, when I read this sentence all the petty part of me could think is , "Oh now that you doctors are personally suffering with long-term after effects you finally understand that death is not the only outcome to be measured."
 
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I have long thought our illness affects the heart with myocarditis. I think it is why so many of us do so badly on the 2-day CPET.

I wish doctors had thought to offer cardiac MRIs to us to see if we have "cardiac inflammatory involvement."

Everything in that paper should have been applied to ME/CFS as well. @Countrygirl, is there anyway David can relate that to them and make them realize that this is just what we have been going through for so long?