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

Disagree here. Fairy tales often have a purposeful and useful moral dimension, like the boy who cried wolf. BPS ideology is an ideology that serves vested power interests far more than patients, and is often morally dubious in the best possible light, versus outright morally bankrupt.

 

It is definitely cheaper for medical insurers and disability insurers. It looks cheaper on the books for government too, where they can ignore the long term financial implications, and other implications for the economy.

 

Zeynep vs. Natalie

https://twitter.com/user/status/1600964815018921984

 

I find this trope highly disingenuous, it's as if they are delusional quacks who don't realize that telling the general public physical symptoms are FND or psychological will get the patient treated as if their symptoms are not real. But what's really crucial is that the patient's symptom of consequential progression will be treated as a delusion and this leads to LTSE from bad advice and lack of consideration.

 

It's just vague gaslighting. Not committing to something that can be held against them but a nudge and a wink where they let the reader fill in the blanks. We see right through it, laypeople don't.

 

So mental conditions have underlying physical pathology too. Nice of them to point that out.

 

The biggest flaw is that they're not similar at all. Subtle changes in the brain? Sure. But it just doesn't jive with things like POTS/OI, SFN, or abnormal CPET results in pwME.

 

Archive link that avoids giving them clicks:

https://archive.vn/L471V

Looks like more persuasive propaganda than some people might want to give it credit for. Like a lot of these articles, it seems to avoid saying much of substance, going more for creating an impression.

Maybe we should learn from this? We clearly need to work on persuasively reaching out to people more. I have to admit that I don't like the idea of trying to write like this, but it's at least worth thinking about what makes this sort of thing appealing to a certain sort, and what can be off putting about some of the things we can write.

Again, it's all the predictable lines of attack, often stretched in misleading ways. But also, with some advocates playing into tropes in ways that can cause problems.

It's interesting what claims are supported by linking to some sort of evidence, and which are not. The only supporting evidence for this representation of the attitudes of advocates for "so-called contested illnesses" [called by who? who decided these particular conditions should be lumped together like this?] is the Jen Brea quote, which is more limited in its claim than the assertions about 'advocates' made by Shure.

Is Shure saying that Brea thinks this?: "They say that their illnesses are strictly physical; the idea that their mental health could have anything to do with their symptoms is as offensive as dismissing HIV as anxiety." Who is she saying holds this stupid view? As it is, it seems to be left floating as a vague smear on anyone thought of as an 'advocate'.

Also, the way things are introduced was more tabloid than the tone the piece seem to be going for, eg: Jen Brea 'insists', they 'fiercely reject' FND. While later on, Sharpe's quote is introduced with: "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.”"

There were other little presentation things, like a headline from Fiona Lowenstein is all in excitable scary caps while the headline from Paul Garner in the following sentence is not. I thought Shure's description of Sharpe's impact on patients was funny: "He couldn’t make patients’ lives perfect, but he could help them improve." It has the rhythm of being balanced - she acknowledged that he failed to make their lives perfect.

Omitting the openly acknowledged political reasons for 'rebranding', some of which seemed to reflect attitudes towards patients that are worrying, seems a mistake.

That seems quite strong. My impression was that a lot of patients were concerned about a potential for post-viral problems like ME/CFS with Covid, but also that there was an awareness of how much uncertainty there was and that research would be needed before strong claims could be made.

A number of the links in this article don't show what they claim to show. There's little things like the link for PACE's protocol going to the Lancet paper, then this:

Links to the article:
Oxaloacetate Treatment For Mental And Physical Fatigue In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long-COVID fatigue patients: a non-randomized controlled clinical trial

That's quite an important assertion she made ["violently insisted"?], and it seems to have been supported by a fairly random paper.

As Shure seemed critical of ME Action for posting anecdotes of people reporting being harmed by CBT and GET ["MEAction is running a PSA campaign geared toward warding viewers away from the treatments validated by PACE. Its website contains links to anecdotes about patients who say they had to go to bed or use wheelchairs after short walks."], maybe it's a little weird to frame her piece with the anecdote of someone who largely recovered with something described here as 'resembling CBT and GET'?

Also, when described at the start of the article it sounded quite different to CBT and GET:

This description from later in the article also sounds quite different to CBT and GET:

Rather than seeing things in terms of 'psychological vs physical vs sophisticated biopsychosocial' why not just commit to being more honest with patients about how little we really know? Erring with overconfidence seems to be a reoccurring problem in medicine and this is bad regardless of the form it takes.

I've kept coming across the irritating assumption that people being critical of work like PACE must therefore be in favour of some pharmaceutical intervention or biological theory. I find that way of thinking quite odd.

How often do they go unchallenged? There was not supporting link, and when I googled that quote only links related to this article came back.

I think that there are ways of viewing women's conditions in psychological terms than can be dismissive, and can be sexist. And there are ways that are not. It depends on specifics. Shure doesn't go into the specifics so it's hard to know what she's really saying here, but the tone of her piece will appeal to a certain sort that likes the idea of seeming sophisticated and compassionate towards MH problems.

Barely beat placebos? How does that compare to CBT and GET?

Are fancy sounding biopsychosocial interventions better?

There are a few bits of this article that drift towards fantasy, and that left me tempted to take the imagery here literally.

What Zachary describes here, also sounds quite different to CBT and GET:

Just look at the way the PACE team tried to support patients like Alem Matthees. Alas...

None of those links seem to support her contention.

Also, how dramatically is illness driven by psychosocial distress? It feels as if she's assuming she laid out more of an argument here than she has?

What makes her think that recognising X (whatever X may be) will lead to all those other things? The UK government's adoption of a biopsychosocial understanding of disability didn't seem to carry us to a more idyllic society - quite the opposite. Is this more than posturing designed to appeal to the sort that like to think of themselves as sophisticated and compassionate?

Is there any point engaging with this properly? If so, how?

 

She relies on one long example, and then Sharpe, Hallett, Stone and Carson. And that's it. The rest is just conjecture and lots of psychosocial stuff thrown around. No patients with ME or LC. No interviews with scientists researching ME or LC. Or clinicians. It's really just speculation presented as established fact.

 

It's done as part of an appealing narrative. And it can feel sophisticated to people who don't know much about it. That seems to be what people like!

I do feel as if a natural disadvantage we have is that the pro-PACE simple narrative can get away with a vague pseudo-sophistication. The PACE-critical narratives seem to need to be either detailed and off-putting, simple and limited or simple and wrong.

Thanks Sean.

That's a more positive view than my own.

I feel like it would be good to be able to engage with it properly if we could, because this sort of thing is important. I'm just cynical that there is any way of really doing so. It seems almost impossible to get any real debate going on these things.

 

@Sly Saint - would you mind editing the opening post to replace the link?

Also, thanks @Esther12 for your helpful post. It made it much easier to edit my post which with I felt a bit uncomfortable.

 

Well, the other tool at our disposal is ridicule. Which for the majority of us might be far more powerful than getting into the nitty gritty. Establish their position as bullshit through ridicule and have them defend against that. I agree that the battle is far from done though. But it's not hard to poke fun at for example LP or curative CBT/GET.

 

I have been saying for years now that psychobabble operates by persuasive rhetoric. More recently I made an analogy with psychobabble being medical politics. BPS is the definition of zombie science, science that should die because it has no merit or has been disproved, but kept alive for financial or political reasons, including the pursuit of power and influence.

 

Some of my past blogs were just this, but we need to get this stuff into social media, not hidden on a forum.