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

I agree. Now that we have (largely) won on the science, I would argue that this is mostly a political debate. In countering this propaganda, I think there is little point going into detail as to why PACE is a load of rubbish for example. The general public just don't care.

As others state above, ridicule in political debates is often effective, particularly when the emperor is wearing no clothes.

The BPS hypotheses lend themselves to ridicule. These hypotheses never been proven and are, indeed, unfalsifiable -- thus it is pseudoscience. It is on a par with Gwyneth Paltrow's woo, 'refrigerator mothers' or astrology and it should be mocked.

Likewise, the belief that jumping on paper circles and shouting 'stop' can cure serious diseases can also be easily ridiculed.

Another line of attack is to point out their incompetence. For example, after countless attempts and excessive taxpayer funding, these quacks still haven't managed to produce a single good quality clinical trial.

Vested interests and conflicts of interest need to be highlighted. That the author of this piece did not declare her conflict of interest (ie, being married to someone who likes to think of himself as a leading proponent of this quackery) is a breach of journalistic ethics in my old-fashioned opinion.

Similarly, it should be highlighted that Sharpe works for the insurance industry and that he has advised them on how to avoid paying out claims to those with ME/CFS and LC. In my view, that this conflict of interest is not disclosed in articles such as this one is very problematic.

 

I've seen it work with NAFO. It's a ridiculous movement but that's exactly the point of it. It's non-threatening but highly effective in exposing idiotic ideas for what they are.

There was a bit about the monstrous women of Sussex or something on this forum that would be perfect for a wider audience.

Or when they talk about terrorists something about the wheelchair drive-by brigade, us putting up empty shoes in menacing places, the bedbound hackers lying in stimuli-deprived rooms and stuff like that. It doesn't have to be good, it just has to bring the point across how ridiculous it is. If they talk about chair throwing one-up them, I hear it was a car, no a plane, no a boat and bought from benefits too. Less fit than people with heart problems but we can manage to throw chairs according to xxx!

The points you bring up are good too. "This Sharpe you mention, was he the one speaking to insurance companies on how to avoid paying us?". Or "talks to insurance companies about denying your benefits, has your best interest at heart though".

Evidence for using CBT/GET on LC-patients, "trust me bro".

There's a ton of stuff that you could come up with to ridicule them. If someone could do pictures you could have a before and after GET series, consent would have to be given here offcourse. Likewise you could photoshop people throwing chairs and all other stuff from their bed or simply have a photo of the M.E. ideological brigades where it's just a photo from the millions missing march of just shoes. A sequence where you go from bloodletting and stuff like that to reach the destination of CBT or GET.

 

There is no need to persuade anyone about the default. The default is already the default, it's persuasive in itself on this basis alone. All it needs is repetition and imposition by force.

Frankly none of their arguments are even coherent. I think it's important to say it: their arguments suck and are just plain terrible, they do not persuade anyone who wasn't already convinced. They only win because it is the default and most people genuinely cannot imagine that medicine could be this inept, because it has so many terrible implications about the rest of medicine being just as bad.

Which is probably the case, but it's an uncomfortable truth no one wants to hear. There is no need to persuade people about a position most are desperate to adopt. This is more like a party in power for decades, so entitled to deference and controlling the entire public messaging that they don't bother putting much effort into it, because they simply don't have to. It's too hard to believe that medicine could do so much harm, which is why it does so much harm.

 

Keith Geraghty is chiming in in this thread:
https://twitter.com/user/status/1601701968719716352

 

Sure, patients' voices are always important! I think it's key to make sure whatever statements they're making are accurate.

 

Bit awkward too given what Garner did wasn't actually 'official' rehab GET was it - he just started to be able to exercise more, which is what we would probably do if we started to get better?

 

To me this piece is bait for the US "left" tendency to produce contrarian think-pieces usually written by men such as Yglesias, and it seems he has already chimed in. These were the people who told us that it was "irrational" to continue to wear masks following vaccination in 2021 and started mocking mask-wearing as "theatre". There is a significant constituency for this stuff and so I think that's why this is presented as a counter-narrative as it slots in neatly into their way of thinking and operating. Seems to be working well.

The so-called "left" have been silent on Long Covid and disability and there is a vacuum of information, which makes it all even more dangerous as these people can pre-game the coming years' debate to be inevitably had once the scale and devastation of LC is absorbed by the public.

Edit: I didn't know that the author is married to Gaffney, which explains a lot if true. Obvious conflict of interest; concerning enough that this was published in the first place without knowing this further problem.

 

dear oh dear

 

Prior to Shure locking her account the other day...

 

I want to make sure I'm not taking this out of context so here's the series of tweets that led to that. Given her defense of PACE I read that as her applying that statement to ME/CFS as much as to anything else.

 

Actually not sure if married or engaged, but a COI in either case.

https://keywiki.org/Natalie_Shure

 

I'm aware this might be another thread, but for the context of this: who is this woman? and why is she so ardent about the topic area - rather than just defending her husband's whatever (I don't know what that 'reason for being is' and why is he ardent?). I'm not on Twitter so intrigued - are there lots like this, and are they linked to the area or involved because of their passion for something else?

I'm often confused by how some who have no direct experience of the condition or linked to it via job or something become so fixated and sure, so end up assuming it is just the style of 'winning arguments' to pick an angle and go for it, but don't know if some have some history behind it etc.

Is this instance just another argument area where it attracts 'debates' with certain sides due to the cliche of truth being nuanced and fact requiring more words vs when you can create to wordcount and emphasis because you are just saying rhetoric to lobby for a certain ideology - and underneath it all this really isn't about FND or ME/CFS at all, but they just get used as vehicles/easy targets where there is some other 'thing' that they are really arguing for? Or are they really bothered about FND?

Are they just people who have got sucked into this because they are contrarians and found this topic (and will fight to the last once you've put your argument over to win it so to speak) or are there roots and connections and 'offline' works that these people are involved in? is she connected to any of the people like Sharpe she is using the words of?

 

Best as I can tell this is all about her politics. I became aware of Gaffney when he promoted & defended the Jeremy DeVine op-ed in the Wall St. Journal, joined, to a lesser extent, by her. She'd already been on about Havana Syndrome at that point, I believe. In that WSJ piece, 'ME/CFS' when first mentioned was in blue text, and presumably anyone clicking on that, which would to reason would mean they were interested in further explanation, and it was a direct link to PACE. When Gaffney weighs in on LC she occasionally comments herself, or at least retweets. Usually ME/CFS & PACE are part of the discussion. When called on it he's had to back off just a bit, or pivot by minimizing it as just one study; I've never seen her address it. Of course, it's a crucial element that has to be valid, or their argument is significantly weakened.

To my knowledge, The New Republic has traditionally been a left-leaning publication, but not extreme in its politics, not considered all that far left of center. I suppose that may have changed; she also writes for Jacobin, which is considered very left of center. She's weighed in quite a bit on political matters relating to a branch of the left-wing Democratic Party that identifies as "Democratic Socialists." Key people in this group are Bernie Sanders, Alexandra Ocasio-Cortes, etc. This ties in with Gaffney's reputation for being a strong proponent of "Medicare-For-All." And Shure has written quite a bit about healthcare policy, naturally from a left-wing stance generally considered 'further' left than most 'mainstream' Democratic party politicians (i.e. Hillary Clinton).

Some of the positions that some in this sphere seem to hold tend to hold similarities to those expressed by people who are proponents of the BPS approach towards ME/CFS. I can't remember if Wessely or his colleagues have spoken directly on this, but I've seen it in writings sympathetic to him & their dealings with us. That is, that as a patient group we tend to consume valuable resources, such as the precious time allotted to doctor's appointments, while we never seem to get better. That we're resistant to 'validated' treatment options (CBT/GET, obviously), and have poor attitudes towards the medical profession, and, of course, that we're downright hostile, anti-science, anti-social, anti-psychiatry, and even threatening.

Therefore, we're a big problem for systems like the NHS, which are seen as benevolent and doing a thankless job in the face of such ingrates and malcontents. If we're right that this is a physical illness, we are likely going to be a very expensive group to deal with, from research to treatments. We could actually even threaten the viability of healthcare systems. Since everybody knows Wessely et al solved this all years ago, why are we still such an angry group anyway? If only we'd accept CBT & GET we'd get better & it'd be one less major problem that affects everyone, not just entitled Westerners who don't want to own up to the actual problem, which is almost certainly depression or another psychiatric disorder. Add to all the rest of it is the casting of us as mind/body dualists & perpetuators of the stigma against mental illness.

There was always an element of this on the political left, not that it was a common discussion. It was mentioned on occasion early in the Obama presidency when the debates took place around the Affordable Care Act. It was a very minor part of the debate, as we always are, but there were voices in ME/CFS advocacy quite concerned that the ACA pointed towards CBT/GET and antidepressants becoming mandated. Fortunately, that didn't happen, not that too many people's minds have been changed. And of course it goes without saying that the comparatively right-wing view that we need to suck it up, get a job, go exercise, whatever, this is only seen in Western society, blah, blah, blah, has always been more prominent, more vocal, more insulting.

But I guess that as a neoliberal talking point, it never really went away. Natalie Shure might be right about Havana Syndrome, who knows. But the way she has always spoken of it has been rather insulting, yet couched in verbiage that leads to accusations that those who take issue with her analysis are actually the ones talking sh*t about mental illness. To top it off, she comes off as unbelievably arrogant--the sort of person who can't understand why anyone else has the right to an opinion different from hers.

In short, it's...identity politics. And in this case I think a little worse than Jeff Wise, author of the New York article from a few weeks ago. She got likes, retweets, and praise, from a whole bunch of 'blue checks,' none of whom seemed to know the first thing about most of what she talked about, let alone ME/CFS or PACE. One called for a Pulitzer; others, from publications like CNN, Politico, Vox, Harper's, the Nation, Vice, Slate, Bloomberg, the Guardian, NY Times, NBC, etc, etc., all with thousands of followers, going on about how great this article is, how necessary, outstanding journalism, compassionate, informative...and that's something you don't see as much of when someone on the opposite side of the political aisle puts out a hit piece on ME/CFS. Generally speaking.

This shouldn't be about politics, of course, though I suppose everything is to an extent. Interestingly I saw that someone on Mastodon posted about it on there...right below a re-post of something from...Omar Wasow. But then there's the role of editorial, and I've been wondering about how the Jeff Wise article wasn't vetted. Now this. Someone responded to a blue check's uncritical lauding of this, which prompted a response that they trusted The New Republic to get it right & not publish something that's actually at odds with the science. In spite of how she uses her platform, I don't care about Natalie Shure's politics, even though in my view it underpins & directly influences her views on all of this. I do care that whatever she says about the science is so incredibly wrong, and wrong-headed, and laid out in a fundamentally misleading & dishonest fashion, and because of what she believes, that's good enough for so many other people with influence.

 

Way back in the 90s when Wessely and mates shoved aside the biomedical researchers and doctors while renaming ME and equating it with fatigue I naively believed that it could all be sorted once we had evidence for a biomedical cause.

It became apparent that there was never going to be enough evidence in the world to persuade them they were wrong. Promising avenues (all we had because there was never any money for larger trials or confirmatory studies) were dismissed because of problems that they were happy to use in their studies or just plain ignored.

I have read every paper on FND I have managed to get my hands on and there is no evidence at all that it exists as a distinct entity. They tend to be confirmatory, full of "mights" and "maybes" in the body of the text even where the conclusion is very positive and they glide over the lack of a mechanism for translating thoughts into disability. They glibly mention brain plasticity as if it was an explanation for instance.

Their premise is unfalsifiable because every disease they misdiagnose is said to have a "functional overlay".

If CBT can cure FND then it should not matter if someone is told they have ME, whether that is an FND or not, the CBT should cure them anyway but where are these people?

I believe that the disease is acceptable to some patients for these reasons.

If you have suffered a trauma, say sexual abuse, then having a disabling chronic illness is an observable manifestation of how bad your suffering was and shows how morally bad your abuser was. Whereas in ME we are told that we are the ones who are morally inferior; lazy, workshy or just plain weak.

Then there is the big thing that intensive physiotherapy does indeed help the brain because of its plasticity. Strokes, brain trauma, even cerebral palsy can all be helped by physiotherapy so CBT is probably not needed to achieve any results they get.

I have watched FND since Sharpe and Stone first published in 2008 (where there were lots of caveats about movement disorders, now not mentioned) and it has scared me. It sounds plausible because the public has never stopped believing that thoughts cause disease (in other people!) and medics believe the claims as paper piles upon paper.

When computers went from room sized to ubiquitous most companies tried to build the best small computer they could and spent lots of money on developers. IBM spent money on salesmen and the PC, which was an inferior product, took over the market. That is what is happening here. Medicine is being taken over and everyone will suffer.

 

Our line of defence is simple:

"NAM, NICE and the CDC disagree with you. There is evidence of harms spanning two decades and 15,000 people across continents. The evidence of benefits was always very low quality, and so doesn't justify the cost or the risk of harm. At this stage, all your theories are just that."

The poor referencing (fraudulent referencing?) is an old trick of theirs. They did it during the NICE process too. They just made up something and linked to a study that vaguely mentioned something a little like what they want to say (but sometimes said the opposite).

Gaslighting is gaslighting is gaslighting. It doesn't matter if she believes she's only disagreeing over aetiology -- she's not, because she's also disagreeing over treatment.

And THAT's the gaslighting part.

Telling patients to do treatments that they say cause them harm is dangerous.

It is also the height of presumption. She is so convinced that she is right that we should accept the risk to our own health, regardless of our own lived experiences, just on her say-so.

It's the logic of abusers. "I'm hurting you for your own good. You just don't understand."

If we don't hurt ourselves, we're the deluded ones, apparently.

There's an irony to this, of course. Their argument boils down to: "Why are you so afraid of psychology, you big bunch of militant, anti-psych nutters? Stop being so deluded and just do what we tell you to do."

They perpetuate the very thing they accuse others of.

 

I don't think it's them that need persuading, they know what they're doing. It's governing bodies and the general public that need persuading, obviously made more difficult by people trying to make a buck on bad science in any way shape or form.

 

I should add: her familiar (in its inaccuracy) way of using references suggests someone has provided her a list to use. There may be some nobbling/coaching/briefing going on.

 

Isn't there always though? I doubt anyone of the journalists wake up one day and think: I'm gonna do hit-pieces on an already very vulnerable group of people. They get coaxed into it. They're willing participants and should be heavily scrutinized, don't get me wrong. But I doubt any of them are scouring the web for obscure treatments published in so-so journals and then start calling "scientists".

 

Can anything be done about this? Editors should be made aware. Determined individuals with agendas like this should not be able to publish hit pieces on patients using obscure discredited "sources" in the name of contrarianism. It violates editorial standards. I suppose editors figure it's clickbait and drives engagement.