Article: We Might Have Long Covid All Wrong (covers FND,ME/CFS,includes Sharpe,Garner, Carson and more).

Husband and wife Adam Gaffney ( http://dradamgaffney.com/ ) and Natalie Shure appear determined to revive the stale, defunct, discredited BPS pseudo arguments as to why ME and now LC should NOT be treated as physical diseases. They want DEBATE and CONTROVERSY instead of science based treatments. But WHY?

Shure and Gaffney are supposed to be liberal lefties, advocates for health equity - but not equity for us apparently. What they both have done is revive the never ending public 'debates', invited the general public/the uninformed to get involved in deciding what's best for sick/disabled people, oblivious or uncaring that while them and those they have incited chatter away, ME patients continue to suffer and some die. The terms "Chattering classes" and "Champagne Socialists" come to mind.


It's mindblowing to see the decades old fatuous arguments (such as claiming that stating that ME (and LC) are physical diseases stigmatises people with mental health conditions) not only revived but broadcast to a big audience who would not be familiar with the science developments. Claiming that ME and LC "could be" 'Functional' is not a million miles from Elaine Showalter popularising the fiction that ME is 'Hysteria/social contagion' in 1997 (in 1997 Natalie Shure was 11, but lots of us had been terribly sick for years/decades and denied medical and social care because we were so extremely stigmatised)



Sorry to say it but Shure's New Republic article looks like Gaffney and Shure hitting back at the NYT and other articles which interviewed ME and LC scientists, and which interview David Tuller, but which don't give the time of day to the debunked BPS ideology and it's proponents such as Sharpe and the FND docs.



Adam Gaffney in Feb 2022 reacting to a NYT article called
'What we know about Long Covid and Exercise'
https://www.nytimes.com/2022/02/12/well/move/long-covid-exercise.html?referringSource=articleShare


https://twitter.com/user/status/1492651460881965063


https://twitter.com/user/status/1492651462379327489







Gaffney here in March 2021 accusing David Tuller of stigmatising people with mental health conditions. These diversionary arguments had all been put to bed years ago. It's like stepping back in time, back into a perpetual nightmare of logical fallacy gaslighting nonsense. Gaffney seems to have wandered in from a place of no prior knowledge and positions himself as an authority on diseases he is clearly desperately clueless about.

https://twitter.com/user/status/1372698384813940750



https://twitter.com/user/status/1372720702005084163



I could kiss David Tuller for his self disclosure. I expect he's relieved I am on a different continent and so won't. But I could cry that the New Republic thinks that 'having a conversation' is more vital than avoiding harming desperately sick patients with disproved therapies and finding treatments that actually work for us. That crap is going to go on for the rest of my life. I have no hopes left.

 

How relevant is this paper or whatever it is? Gotta be honest that I never heard of it before Shure's article.

 

Natalie Shure possibly published this article/essay in the New Republic because she couldn't get it into the NYT or the Atlantic. Who knows. But between her and her husband Adam Gaffney we have a persistent effort to undermine credibility in LC and ME as biomedical diseases needing serious biomedical research, and repeated emphasising that supposed psychosocial factors are "drivers of illness and suffering" .


Adam Gaffney seems stuck on the debunked idea that LC should be treated as a Lung Disease, with exercise rehabilitation, and appears to conflate long term lung impairment from severe Covid with Long Covid - and is keen on attributing LC to social trauma.



'We need to start thinking more critically — and speaking more cautiously — about long Covid'
Adam Gaffney March 2021

'The sad truth is that we are living through a time of incredible trauma, sorrow, and hardship..... This has been a period of prolonged social isolation with no obvious parallel in history. We should expect a surge in both mental anguish and physical suffering that, while connected to the once-in-a-century pandemic, will not always be directly connected to SARS-COV-2 itself......

.... there may often be multiple causes, stretching from the virologic to the psychosocial. Needless to say, every such patient deserves careful, empathetic evaluation and appropriate treatment and referrals.

More broadly, policies to stem psychosocial suffering stemming from the trauma of the pandemic are needed...'
https://www.statnews.com/2021/03/22...re-critically-speaking-cautiously-long-covid/





The Long Covid Conundrum' Adam Gaffney August 2021

'Ironically, treatment with clear efficacy for patients with chronic lung disease—physical rehabilitation—is now among the most controversial in long COVID.19 This controversy stems from a longstanding dispute about the use of exercise therapy for patients with chronic fatigue syndrome that culminated in its removal from Centers for Disease Control and Prevention (CDC) recommendations and National Institute for Health and Care Excellence (NICE) clinical draft guidelines. However, evidence from other chronic lung diseases suggests that pulmonary rehabilitation will likely prove useful in patients with respiratory impairment due to COVID-19.'
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8379817/





What Doctors Still Don’t Understand About Long COVID Adam Gaffney October 2022

'Even mild COVID-19 is at least correlated with a startlingly wide spectrum of seemingly every illness. We need a much better taxonomy to address people’s suffering.'

'... psychosocial strain is an important driver of physical symptoms and suffering—one that clinicians should treat with empathy. All suffering, after all, is ultimately produced and perceived in one place: our brain.

.....Diverse neurological symptoms can also be produced by a glitch in the function rather than the structure of the brain—or what has been described as problems of brain “software” rather than “hardware”—resulting in conditions known as functional neurological disorders .....

.... while no specific long-COVID medications have emerged, some treatments may be helpful for improving certain symptoms regardless of the specific type of illness, such as physical rehabilitative treatments for those with shortness of breath or reduced exercise tolerance.
https://www.theatlantic.com/ideas/archive/2022/10/long-post-covid-symptoms-mild-cases/670469/




Natalie Shure echoing her husbands phrasing ....

'Last month, I authored a reported longform essay in The New Republic called “We Might Have Long Covid All Wrong.” The piece argued that psychosocial distress is a significant but deeply misunderstood driver of illness and suffering, and plays a probable role in Long Covid.'

 

I see that a lot lately and it really has to be said that although it is scientifically debunked, the BPS paradigm is still the only game in town. Far from being discredited, it has actually reinforced in many, despite seeing it debunked. It's a belief system, beliefs are impervious to reason. Only a real explanation will convince people otherwise, like with peptic ulcers, which would 100% still be in the MUS/BPS model otherwise.

It's the dominant political paradigm. It is scientifically bankrupt and debunked, but let's not lose sight that it is more dominant than ever, somehow seeing it fail in real time right before their eyes doesn't dispel beliefs, that's how you know that's all they are, only beliefs can withstand being contradicted so thoroughly.

Beliefs are irrational and many people have built a worldview around chronic illness where being proven wrong is simply impossible to accept, even more so for professionals, who have effectively been promoting blatant pseudoscientific quackery. We know how hard it is for MDs to admit they're wrong or ignorant about even small things, this is a massive blow to the ego-driven model where they are encouraged to be confidently wrong and admit no wrong.

 

Shure is on the staff of The New Republic, which is a well-known historic publication that has gone through many iterations over the decades, most often with a center-left orientation. Gaffney is at Harvard and publishes in lots of places. I know their articles can be upsetting but I think it's lost energy to spend time worrying about their very minimal influence. I agree in general with many of their progressive views on health care and social service policy but they are obviously twisted backwards on this issue.

 

Not that I'm aware of. Not sure what the rules are.

Here's something probably best skipped, but I thought it was worth posting just because it seemed like a better option than not. As Tom K would say, "Not A Recommendation." Perhaps the only interesting thing is that this author is further away politically from Shure than the hosts of the podcast she was on recently. The cognitive dissonance in praising the work of someone whose views, if not identity, you would be so radically opposed to...I mean, it's not like they're finding agreement that the earth is round or that water is wet. It's someone not caring about the lack of science or accuracy, on top of not knowing and not finding out any better. While people disabled from an illness now recognized as physical suffer.

Good to know that it's politically expedient to bypass the opportunity to spend an hour in order to try to embarrass someone whose politics you disagree with vehemently (I mean, it's what I would expect from this publication). Because this bias so many hold just makes so much sense, in spite of all the reasons why it doesn't, that actually taking even a perfunctory look at the scientific evidence isn't worth the effort.

I pulled a couple of excerpts. It's a short piece. Honestly not worth it for most people, maybe just scroll away from here, if you made it this far. I do think there is something to the idea of paying attention to how people do perceive us, even if both Shure & this guy are strident in their views.

Neurotics With Attitude
Long Covid advocates respond to a provocative New Republic article on the etiology of their condition.
John Hirschauer​

https://www.theamericanconservative.com/neurotics-with-attitude/

Some sufferers resist the possibility that their condition has a psychogenic component, because they have built identities around being Long Covid patients. Some of these sufferers-cum-activists have sought to exclude therapy and exercise as treatments for Long Covid and other apparently psychogenic conditions. Shure notes, for example, that exercise and therapy is "the only clinically validated treatment" for people with "myalgic encephalomyelitis/chronic fatigue."​

Long Covid sufferers are similarly unwilling to entertain the possibility that their condition is at least partially psychogenic...

I am neither a neurologist nor a doctor of any sort. For all I know, researchers in the coming years will find a biological marker of Long Covid, though pumping billions of dollars into research creates perverse incentives to reject more obvious conclusions. Still, as I read through the army of people in Shure's Twitter replies, I can't help but thinking they seem a bit, well, hysterical.​

 

She didn't quote Gaffney. I don't think this can be considered a "conflict of interest" that requires disclosure from a journalism ethics perspective.

 

Sounds like someone is desperate to provoke emotional reactions that he can cite as evidence that patients are indeed neurotic hysterics.

 

This accusation of having built identities around being a patient. As if there was an option to just choose a life that is not affected by the illness in every way.

 

"Some sufferers resist the possibility that their condition has a psychogenic component"

This is basically part of a repeated script that remains highly appealing to 'the not ill', and makes them feel safe, smug and superior. The 'script' of patronising, gaslighting, infantilising, judgmental phrases and little narratives has barely changed since Showalter 1997 informed the world that ME sufferers are part of a 'plague' of socially contagious, self obsessed, hysteria that had something to do with the Millenium year 2000 and was spread through the media. The script barely changes, but is added to as new players involve themselves in exploiting our disease for career or profit.

 

That's a new one. Is it when a major coronary event happens in association with cystic fibrosis?

 

Everything they say about us is projection. Every single accusation is a confession. This is not the only thing where this occurs. This is politics. This is what happens when politics dominate an issue so thoroughly that you can't even do science because it angers the fanatics who built their entire worldview around this mediocre ideology.

 

The American Conservative is a fringe publication that essentially appeals to the likes of Trump supporters. I wouldn't waste a second fretting about it.

 

Yes, but they (Shure et al) do know they are poking the bear, so to speak. These journalists (and their self selected, mostly BPS trained experts who like to be in the media) like controversy and division, it sells papers/Twitter algorithms etc

So we (pwME/LC) get annoyed, angry with their world view as we have ours (rightly so, by the way), look “hysterical” to the public, it is a perfect way to perpetuate the cycle of BPS and gaslighting.

Psychiatry and Psychology know it very well from their training and practice, and sadly they do know how to perpetuate it, on many levels… It’s just one big drama cycle churning around - but with every step, raising awareness, countering and debating, we are creating change.

edited for formatting

 

https://twitter.com/user/status/1622179576460754945

 

https://twitter.com/user/status/1622290711012851713

 

i note we have a thread on that study, i dont know how reliable it is as a refutation? The thread didnt go very far

Deep phenotyping of myalgic encephalomyelitis/chronic fatigue syndrome in Japanese population: Kitami, Fukuda et al 2020 | Science for ME (s4me.info)