Article: Despite Resistance, Policy Makers Push The Paradigm On ME/CFS And Long COVID - Hughes, Lubet and Tuller

"Change in medicine is never easy, especially when practitioners are asked to dispense with long-held beliefs about an illness. It is this challenge—of steering an entire community to collectively revise its understanding of reality—that philosopher Thomas Kuhn flagged in his classic analysis of scientific revolutions. Kuhn described such an inevitably messy affair as a “paradigm shift.”

When emerging science diverges from past assumptions, it follows that the prevailing base of knowledge will need updating. In theory, this epistemological process seems straightforward. The problem arises in practice, as such updates often face implacable resistance from individual human beings and the institutions they control. Kuhn’s insight was to highlight the social psychology of scientific transitions. When people invest their professional credibility in a specific idea or approach that is later surpassed by advances in science, many will be frozen by the dread of looming personal obsolescence. While some succeed in gradually pivoting to the new reality, others respond with various acts of resistance, seeking to delay and disrupt the forces they feel are promoting the discomforting change. And even after the revolution has become inevitable, some practitioners cling to the old ways.

This tortuous process is currently on vivid display in the debate over the causes of prolonged illness after an acute viral infection—especially the conditions known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), formerly called chronic fatigue syndrome, and long COVID—the popular name for what the National Institutes of Health (NIH) calls postacute sequalae of SARS-CoV-2—or PASC. The controversy revolves around whether these are largely caused by pathophysiological processes, or—as some in the medical establishment have asserted—by a combination of physical deconditioning and mental health issues, including anxiety, depression, post-traumatic stress disorder, and other conditions."

https://www.healthaffairs.org/conte...cy-makers-push-paradigm-me-cfs-and-long-covid

 

Brian Hughes on Twitter

"Our call to action for the healthcare and policy community -- it is time to stand up for science and finally dispense with obsolete psychobehavioral treatments for #MECFS and #LongCovid
In @Health_Affairs Forefront, with @davidtuller1 & Steven Lubet"

and David Tuller

"As always, it was great to work with my friends and colleagues @b_m_hughes and Steve Lubet. Enough with the psycho-babble and egregiously flawed research into psycho-behavioral treatments for ME/CFS and long Covid.

and

"Always a pleasure to write something with psychologist @b_m_hughes and legal scholar Steve Lubet. This piece is about paradigm shift in ME/CFS and post-acute-viral illness. We mention @zeynep 's call for an NIH institute or center focused on this issue."

 

In the U.S., Health Affairs is generally viewed as the leading health policy journal. Not sure if it's read much elsewhere. What's great about these Forefront articles (until they gave it this name, it was just the blogging platform) is that they are edited in-house rather than peer-reviewed. I check in with my editor there about an idea and we discuss it and there's a normal journalism-type back-and-forth editing process, and then it runs in a couple weeks. As a journalist for 40 years and an academic for 10, I really, really prefer the journalism process, where you have an editor you can actually talk to and hash things out with. ADDED: And they get included in PubMed so are legitimately citable.

 

Excellent article! I left a comment, I hope the article is widely read.

And for sure revanchism is fitting here. The level of bad faith we continue seeing from the people most responsible for this disaster is completely ouf of bounds for any respectable professional. It belongs in politics, and particularly in the ugliest parts of it.

It's truly baffling how any serious person can view all this hostility towards patients as anything but unethical. It has zero chance of producing good outcomes, and sure enough it has produced a massive disaster, ethically and economically.

 

Thanks, Trish and Richard. Since the previous piece was published in May, 2021, before the release of the final NICE guidelines, we thought it would be worthwhile to provide an update and reinforce the point that events had continued to shift in the appropriate direction.

 

Thanks to David, Brian and Steve for a great article.

It's interesting, isn't it, because in this case there has been no breakthrough discovery. The paradigm shift was the decision to read the evidence, and the scientific revolution is that there is no evidence.

I half-suspect there's a forgotten George Orwell manuscript in a loft somewhere that describes the whole thing.

 

This is a really good point, and it made me laugh. And it also made me sad. Because you're right, the revolution here could have happened whenever if people had not accepted such crap research as actionable. But part of what helped the shift is the Institute of Medicine and NIH reports from 2015, which surveyed all the studies and said, more or less, yes, there is a there there, it's not depression and anxiety.

So one could say the slow accretion of data over many years, even though nothing is conclusive, has tipped the scales enough to make a big difference.

 

@MSEsperanza has highlighted one of Brian's modules:

https://universityofgalway.instructure.com/courses/8163

It ought to be an excruciatingly embarrassing read for people who're paid to weigh evidence and inform policy. They had this crock of shite right under their noses for decades, and they still couldn't smell it.

 

None have appeared yet. Not sure how the journal moderates. I'll ask.