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

very long piece (I've only skimmed through it).

https://newrepublic.com/article/168965/might-long-covid-wrong

eta:
(from Esther12)
Archive link that avoids giving them clicks:

https://archive.vn/L471V

 

The author of this piece is Natalie Shure, a journalist married to Adam Gaffney. Gaffney of course has been a prolific commentator on the Long Covid debate, pushing the narrative that psychosocial strain is likely responsible for a considerable number of complaints attributed to lasting effects from the virus itself. Really disheartening to see this duo’s persistent efforts to influence the debate.

 

I read this garbage so you don't have to. She discusses both the psychosomatic and physical models of ME and LC with a strong bias towards them both being psychosomatic, but in a more modern sense where emotions are claimed to make something actually go wrong, like FND. They feature a story of a woman who got severe FND and mostly recovered through rehabilitation. They claim CBT/GET are the only evidence-based treatments for ME/LC. Tuller's criticism of PACE is mentioned, but not the thrust of his argument (it's all placebo effect). Throughout, there's this broad assumption that both ME and FND respond equally to rehabilitation, which is clearly not the case.

They're strongly dismissive of the biomedical research into ME/LC. They say people with mental conditions have similar biological changes, but make no mention of dysautonomia or 2-day CPETs. They describe the CDC's unambiguous statement that ME is physical as a "disclaimer."

 

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:

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 Advocates have successfully gotten GET and CBT withdrawn from official ME/CFS treatment guidelines in the United States and the U.K. and have also objected to it as a treatment for long Covid."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

[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.

 

It’s very difficult to get a handle on where New Republic is oriented these days. Left contrarianism, sort of?

 

No evidence of that. Literally none, it's a vague generic explanation that sounds like it's something but actually there is no claim here at all, it's as hollow as "detoxifying". Every single reason these ideologues use to deny chronic illness applies to them far more. Every single reason.

I guess it's necessary that it has to end in a bang. The charlatanism has to be elevated to 11, made prominent, so that its end is spectacular. This should have happened decades ago, but I don't think there's another way for the wizard of Oz to discredit itself other than stepping off the stage and walking like a duck.

Agree on the New Republic, hasn't been a relevant publication in years frankly. I don't think there's any point trying to correct any factual errors, I doubt anyone involved in this cares. The best to do with this IMO is to make the LC community aware of the facts, mostly done already, they will not take kindly to being insulted yet again. They are well aware that this is the reason nothing is happening.

 

One thing I will disagree with is with David Marks:

This is not misuse of the BPS model. This is the BPS model. It's being used for what it's intended for. It's the modern name for psychosomatic ideology, and this is how psychosomatic ideology has always been used.

 

I don't think it ever will be though. It is too helpful and useful to governments, insurance companies, and non-biological healthcare companies. Money trumps everything.

 

Conflict of Interest…..

A gripping deep deep—seems like he’s got the brain fog.

https://twitter.com/user/status/1600843819272241154

 

Both NS and her husband Gaffney are leftists.

 

Oh for the day when the biological cause is found.

 

And now Matt Yglesias has to chime in.

https://twitter.com/user/status/1600888090473775106

 

I truly hope a concerted effort to counter this reporting is made. It recycles the same tropes about false mind/body dichotomies, intolerance to mental illness, PACE being a work of genius, etc. It never ends, and figures like Shure and Gaffney earn accolades at our expense. A perverse system

 

This is a major problem with the concept of FND. It seems to be a true clinical entity. But doctors misdiagnose a huge number of people with it, either by formally saying, "You have FND," or more commonly and indirectly, insinuations it's just anxiety.

 

Shure used the same framing, illness that has "eluded" medicine. While the article cites medical doctors who are making medical claims about this, how they actually understand this medically using their medical experience as medical doctors.

They clearly see no conflict here. That this construct was made-up by medical doctors, is perpetuated by doctors, is dispensed by doctors, with evidence from medicine using medical explanations. But those symptoms have eluded medicine, requiring, uh, medical doctors to solve it.

It's actually amazing when you think of it. How completely nonsensical this all is, a massive destruction of human life, and it has the intellectual level of fairy tales.

 

Yglesias is well-known as a troll. No surprise there, this is what's called the "intellectual dark web".

 

The current concept of FND has no basis in reality. Stone admires the 19th century neurologists and psychologists who gave us hysteria which he believes he has put on a sound, modern footing.

The research papers are all confirmatory and full of "maybe" perhaps" "possibly" and other such words. They are full of scientific jargon which is barely comprehensible until you come to the part where "caused by trauma" is slipped over with no causal explanation. Of course, it is not always caused by trauma anymore but they never explain why it happens then; it is no longer a disease of exclusion but has positive signs yet many diseases such as epilepsy can co-present as somatic and psychological at the same time. What happens to the signs then?

What probably does exist are diseases of the brain and nervous system where the processes do not work properly. It is very possible that there is no structural damage but things do not work properly but it is like the Freudian subconscious mind which is not at all like the way many of our workings are not always under conscious control.

What the BPS forget is that every manifestation of stress, or trauma or whatever, must be through the physical systems of the body. If stress makes us feel nausea then the gut is working to expel our stomach contents in exactly the same way as if it was too much alcohol. They have it backwards.

Instead of trying to control physical symptoms by psychological means it would make more sense to control the physical outcomes then people could control their psychology without the added stress of nausea or fits or headaches or paralysis all of which are stresses in their own right.

 

Interesting wording because that isn't the same as saying he can think of a chronic illness where it definitely helps either.

And if your career is based in aiming to develop a mind-body theory for all illness you wouldn't be trying to 'think too hard' to name something as it would basically mean you couldn't try and sell such wares to that area?

Would be plain untrue for ME/CFS - the area he has been working in for decades.

I'm guessing he has tried to caveat the life out of the phrase in order that he might think noone can ever prove this fictional 'carefully graded exercise' is the same as the one he tried and patients tried that reported harm and so on? I think the phrase 'you wrote the quite-specific manual' and it didn't 'help', yet he seems not to note why the magic ambiguity phrase he has used is any different, is why this is so jawdrop.

And there is no way he would find it hard to think of the name of that condition?

 

Interesting that in both this article and the NY Mag article they don’t actually interview anyone who believes that LC is actually a biological disease—don’t know why the editors let them do this—this isn’t really journalism—it’s opinion writing based on misinformation.

 

I'm not sure it is cheaper, and certainly if you add up how much money has gone into research and initiatives and kingdoms under those who push BPS it seems it presents a fair old sum that could have been put to something that actually might have helped. The saddest thing is the loss of data and detail in records thanks to the 'don't investigate' and don't differentiate approach of BPS (who knows what people had, types could have become clear, progression into other conditions/comorbidities shown, and importantly: whether it was just delaying even more costly impacts etc).

It might have promised back in the day to be 'quicker to get up and running', had head honchos 'raring to go and get it set up', and if you imagine the model of IAPT LTC stuff where they use scripts and remote less of an issue with 'limited by qualified staff' - so in the 'offer them something' (political expediency of being able to say you did something) category.

Which makes me think of the statin thing in the UK where there was a big push a number of years ago to get most/may (?) people over a certain age or whatever on them - and maybe was a bit of a 'suck it and see' theory/experiment they felt worth doing or maybe a genuine policy I don't know enough detail but seems to be getting debates now for those who are lower risk certainly.
https://www.euractiv.com/section/he...k-and-us-at-odds-with-europe-over-statin-use/
https://www.bmj.com/company/newsroo...-benefits-of-statins-may-be-marginal-at-best/