New Scientist: Exercise advice for long covid may be doing more harm than good

[Nightsong]

Exercise advice for long covid may be doing more harm than good​

Exercise has been touted as a tool for managing and treating long covid, but much of the evidence has neglected one of its most debilitating symptoms: post-exertional malaise

https://www.newscientist.com/articl...-long-covid-may-be-doing-more-harm-than-good/

ETA: an archive link

 

[Nightsong]

A few quotes, including from @Tom Kindlon and @dave30th:

[on the Berry study]

“If you don’t achieve the level that’s minimally clinically important, you don’t go around claiming success,” says David Tuller at the University of California, Berkley. In response, Berry says it’s not for us to say whether an individual would benefit from this improved mobility. “I think that’s open to interpretation.”

[on PACE]

This situation is reminiscent of chronic fatigue syndrome, also called myalgic encephalomyelitis (ME/CFS), which may be caused by an infection and commonly involves post-exertional malaise. In 2011, The Lancet published the PACE trial, which concluded that graded exercise therapy – incrementally increasing the duration and intensity of activity from an achievable baseline – moderately improved fatigue and the ability to perform daily tasks in people with ME/CFS.

But that trial has been plagued by criticism ever since. In a letter to The Lancet in 2011, Bart Stouten, an independent statistician, writing with health psychologist Ellen Goudsmit and the then-chairman of the ME Association Neil Riley, pointed out that the researchers behind the trial changed their definition of improvement from its starting protocol to the final paper. Five years later, Tom Kindlon at the Irish ME/CFS Association and his colleagues reanalysed the data according to thresholds specified in the starting protocol and concluded that this change to the definition increased the rate of recovery among those doing the exercise intervention four-fold. “We highlighted that there was minimal or no changes in objective measures, and there was no change in long-term improvement,” says Kindlon.

What’s more, Kindlon, Tuller and their colleagues reported in 2018 that serious adverse events, such as hospitalisation, were twice as high in the graded exercise therapy group as the control one, based on the procedures set out in the PACE trial protocol and data obtained via a freedom of information request. “What we learned from trials of exercise studies in ME is that it’s not a benign intervention,” says Dalton.

 

[dave30th]

ETA: an archive link

The text seems to get cut off at the end. Does anyone have access to the later part of the story?

 

[Nightsong]

Not sure where it's cut off, but these are the last two paragraphs:

Mike Ormerod, who has long covid and volunteers at Long Covid Support, says he takes research papers that show the dangers of exercising with post-exertional malaise to all of his medical appointments. “Through our support group, we hear instances of people being advised to do exercise,” says O’Hara. “Most doctors generally believe that exercise is good for you, so they’ll encourage people to be active.”

“The risk is that the message is ‘exercise works for long covid’, and that’s potentially so damaging to the people who have an ME-like phenotype,” says Dalton.

 

[Dolphin]

Not sure where it's cut off, but these are the last two paragraphs:

Thanks. That means that actually everything is at the archive link.

 

[MrMagoo]

When contacted, Peter White said all these criticisms are old news…

He’s not wrong, that’s the thing when they’re valid.

 

[dave30th]

Thanks. It seems then that I just had the last line of the story--consisting of three words--cut off at the bottom of the image I saw.

 

[Sean]

In response, Berry says it’s not for us to say whether an individual would benefit from this improved mobility. “I think that’s open to interpretation.”​

What a gutless cop-out.