The author of this piece is Natalie Shure, a journalist married to Adam Gaffney
Do you have a reliable source for that? That would be useful.
Also only able to skim the article and it seems there is a lot that needs to be rebutted, e.g. this quote from Sharpe:
“It’s quite hard to think of any chronic illness where some psychologically informed rehabilitation doesn’t help,” Sharpe told me. Ditto for carefully graded exercise."
Context:
By the mid-2000s, Michael Sharpe had spent years treating the kinds of patients he’d first come across at the infectious-disease clinic at Oxford: people with persistent, chronic symptoms that were sapping the brightness from their lives. He couldn’t make patients’ lives perfect, but he could help them improve. “It’s basically just what we used to call rehabilitation,” he told me. “It’s helping people accept the situation they’re in, to give them some hope for the future and help them gradually move forward.”
In 2005, Sharpe began recruiting patients to participate in the largest-scale clinical trial ever run on ME/CFS to see if his restorative methods could help those patients, too. The
PACE trial study protocol, which was designed in collaboration with a
British ME/CFS patient charity, strove to determine whether graded exercise therapy, or GET, and cognitive behavioral therapy could improve outcomes. In 2011, Sharpe and his co-authors published their answer: GET and CBT did moderately improve the health of ME/CFS patients. Few study participants made a miraculous turnaround, and some didn’t respond much at all, but there was an undeniable if modest boost overall. That made GET and CBT the
only clinically validated treatment for ME/CFS.
Four years later, journalist David Tuller wrote a
15,000-word critique of the PACE trial, which he called “bogus and really terrible research.” Dozens of researchers, clinicians, and advocates joined him. They
wrote open letters to
The Lancet demanding PACE’s retraction, discussed the issue at conferences, and condemned the trial in other outlets. An extended court battle forced Sharpe and his co-researchers to hand over their data, which detractors
reanalyzed and claimed undermined the PACE conclusions. The psychologist David Marks, editor of the
Journal of Health Psychology,
summarized his objections to what PACE represented: “Gaslighting has been applied to the entire ME/CFS community by misapplication and misuse of the biopsychosocial model.”
Considering PACE’s ultimately rather mundane finding, the tenacity of the response is surprising. “It’s quite hard to think of any chronic illness where some psychologically informed rehabilitation doesn’t help,” Sharpe told me. Ditto for carefully graded exercise. Today, despite the blowback, Sharpe stands by his research. “It’s been hammered probably like no trial in history ever has. It’s been debated in the U.K. House of Parliament three times. It’s still there—no one has killed it.” Neither
The Lancet nor the Medical Research Council UK
disavowed it. More importantly, he said, “some people’s lives will be damaged because they won’t have rehabilitation when they could have, and that’s terrible.”
NICE Guidelines also referred to as bad decision (and mis-linked).
Natalie Shure:
"What he’s saying is hardly a stretch. Advocates have successfully gotten GET and CBT
withdrawn from official ME/CFS
treatment guidelines in the United States and the U.K. and have also objected to it as a treatment for long Covid."
Apart from all the inaccuracy in this piece that needs to be rebutted I think that this piece shows again that it would be much easier to completely rebut/ debunk it if it weren't that easy to find that in one point the author
is likely right isn't completely wrong -- that often our allies' claims about evidence for biomedical abnormalities in ME/CFS and LC are over-egged .[*]
Also, there might be a more cautious / correct way to refer to potential harm from GET/CBT than it's often worded by our allies and even by patient organizations
I think there are sufficient trustworthy accounts by patients who experienced a deterioration after GET / other exercise to cast doubt on the claims reported in PACE and similar studies. I'm afraid it's still hard though to make a causal link from these individual accounts and patient surveys.
It seems to me we have better worded arguments from papers and letters published in academic journals and posted somewhere else on the forum: There is evidence on insufficient reporting of harm both in clinical studies and in healthcare in general.
Edit: See the excellent video on harms by
@Adam pwme
The definition of harm in the PACE trial may not have been sensitive enough to record serious adverse events [4]. There is no evidence that UK clinics inform patients about the risk of permanent deterioration, screen for harm, or record harm effectively [5]. The yellow card system for adverse incidents and drug interactions in the UK does not allow harm to be reported from behavioural treatments [6]
[4] = Kindlon T. Do graded activity therapies cause harm in chronic fatigue syndrome?
Journal of Health Psychology. 2017;22(9):1146-1154. doi:
10.1177/1359105317697323
[5] = McPhee G, Baldwin A, Kindlon T, Hughes BM. Monitoring treatment harm in myalgic encephalomyelitis/chronic fatigue syndrome: A freedom-of-information study of National Health Service specialist centres in England.
Journal of Health Psychology. 2021;26(7):975-984. doi:
10.1177/1359105319854532
Wikipedia entry on the magazine New Republic (doesn't seem bad per se?).
@dave30th
@adambeyoncelowe
@Keela Too
Edit: passage on evidence of harm / clarity
[*] Edit 2: Still haven't read only skimmed but as Esther12
points out the wording the author uses referring to those claims don't even seem to reflect what referenced ME advocates/ patients actually said and how they argue; her linked references don't seem to relate to any content that reflects what the author claims is being said.
Also the author doesn't actually criticize any over-egging of biomedical evidence -- she only insinuates that the biomedical findings also would fit into an etiology of mental illness / FND-like illness -- but fails to acknowledge that these are only hypotheses too and there's no robust evidence for this kind of claims or any of the pathomechanisms proposed by the referenced FND experts either.
So she just skips any actual scientific discussion, including the huge amount of well-argued and substantive critique of the kind of research she is promoting.
