Paradigm Lost: Lessons For Long COVID-19 From A Changing Approach To CFS, 2021, Hughes, Lubet and Tuller

Trish · May 18, 2021

https://www.healthaffairs.org/do/10.1377/hblog20210514.425704/full/

For decades, patients with chronic fatigue syndrome, the poorly understood illness also known as myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS, have experienced neglect from the medical establishment and dismissal from society at large. In recent months, however, the condition has gained remarkable visibility, since many survivors of COVID-19 are reporting the sort of profound exhaustion, cognitive impairment, orthostatic intolerance, recurrent relapses, and other medical complaints that characterize ME/CFS. The New York Times, The Guardian, the BBC’s “Newsnight,” and other major news outlets have extensively covered the apparent overlap between ME/CFS and what has been dubbed Long COVID or, more formally, post-acute COVID-19 syndrome.

As with Long COVID, a large subset of ME/CFS patients reports that the condition began with an acute viral infection from which they never seemed to recover. Many remain severely impaired for years, even decades. Anthony Fauci, the country’s top infectious disease expert, has drawn attention to the similarities, observing that the pattern of Long COVID symptoms is “highly suggestive of myalgic encephalomyelitis and chronic fatigue syndrome.” It is still unknown what proportion of Long COVID patients will ultimately recover on their own. Despite the fact that periods of post-viral fatigue and other symptoms are actually quite common after a variety of acute infections, the phenomenon is surprisingly understudied.
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Wyva · May 18, 2021

Great article!

"At various times in the past, members of this discipline have similarly defended the “refrigerator mother” theory of autism, the use of tooth extractions to treat schizophrenia, and claims that AIDS is caused by depression rooted in “group fantasy” among gay men. "

I didn't know about the last one. This makes you wonder who is really not right in the head here...

Peter Trewhitt · May 18, 2021

A very useful article, let’s hope it gets widely read.

Daisymay · May 18, 2021

Yes an excellent article, thanks very much to all involved.

Trish · May 18, 2021

Great article. So much is quotable but I'll resist quoting any more. Go and read it an share it widely!

Kalliope · May 18, 2021

Brian Hughes has also written a post about the article:
The Science Bit: Paradigm Lost: Lessons for Long COVID

Quote:
We take the view that change in science is seldom smooth, and that there is no absolute guarantee good ideas will supplant bad ones. Scientific vanity is real. History has shown that many scientists, even prominent ones, would rather cling to the status quo than allow their theories be debunked by data.

Andy · May 18, 2021

https://twitter.com/user/status/1394700585157513218

Hutan · May 18, 2021

These experts continued to describe GET and CBT as “evidence-based” treatments, despite the fact that NICE had just rated the purported underlying “evidence” as so low quality as to be rightfully ignored.
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This is an example of a wider problem. Proponents of a treatment can do a woefully inadequate piece of research and then claim the treatment is evidence-based. But research that does not provide a fairly reliable answer to a question should not be assumed to provide evidence. Are there not laws against promoting a treatment without evidence, including with research that doesn't meet basic standards of reliability? If not, there should be.

DokaGirl · May 18, 2021

Wow - thank you to @dave30th, Brian Hughes (can't recall if you're on this Forum), and Steven Lubet.

Great!

DokaGirl · May 18, 2021

Andy said: ↑

https://twitter.com/user/status/1394700585157513218

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Exactly - I have heard them use the rationale, " lt's all we've got." Apparently referring to CBT & GET.

DokaGirl · May 18, 2021

Hutan said: ↑

This is an example of a wider problem. Proponents of a treatment can do a woefully inadequate piece of research and then claim the treatment is evidence-based. But research that does not provide a fairly reliable answer to a question should not be assumed to provide evidence. Are there not laws against promoting a treatment without evidence, including with research that doesn't meet basic standards of reliability? If not, there should be.
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Hutan said: ↑

This is an example of a wider problem. Proponents of a treatment can do a woefully inadequate piece of research and then claim the treatment is evidence-based. But research that does not provide a fairly reliable answer to a question should not be assumed to provide evidence. Are there not laws against promoting a treatment without evidence, including with research that doesn't meet basic standards of reliability? If not, there should be.
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Totally agree. Absolutely logical. Sadly, there is a history of the powerful avoiding responsibility, and standards that more mere mortals cannot escape. Glaringly wrong of course. There should be a level playing field.

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Paradigm Lost: Lessons For Long COVID-19 From A Changing Approach To CFS, 2021, Hughes, Lubet and Tuller

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Paradigm Lost: Lessons For Long COVID-19 From A Changing Approach To CFS, 2021, Hughes, Lubet and Tuller

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