BPS attempts at psychologizing Long Covid

Given how much money will be handed out for long covid I think it is time to bring to light / exert pressure on the funders of trials for ME and covid.

It seems that even as so much money has been wasted on the BPS cabal there is still massive sums available for 'researchers' to waste on playing fast and loose with 'science' and getting nowhere. Some of the more savvy have started to be better at pretending to do something more bio-science sounding.

Funders need to take the time to parse the details and make sure that they are getting real world value for their money not belief in the product value from the POV of the individuals playing at 'science' where everything they do is a gold star, thumbs-up, pat on the back, 'ata boy, awards fest, unparalleled brilliant success.

Funders should start to feel the heat.

 

WSJ Opinion: The Dubious Origins of Long Covid by Jeremy Devine (paywalled)

- Echoes of chronic fatigue in the effort to blame to coronavirus for a host of questionable symptoms
...
- The topic deserves serious study. Some patients, particularly older ones with co-morbidities, do experience symptoms that outlast a coronavirus infection. But such symptoms can also be psychologically generated or caused by a physical illness unrelated to the prior infection. Long Covid is largely an invention of vocal patient activist groups. Legitimizing it with generous funding risks worsening the symptoms the NIH is hoping to treat.

ETA: Eric Topol has shared the whole text on twitter

 

Someone should really tell Dr Fauci then, as it's clear he's been misinformed and knows less about the virus and it's effects than what, a psychiatry resident?

Looking for what, a fast buck, a promotion?

 

That WSJ piece was bad, real bad.

 

It's pretty funny if you ask me. He obviously thinks he can get away with emulating the OG BPSers but he doubles-down a little too hard when the tide is already turning. I guarantee that it backfires for him, although the consequences might be pretty light in his line of work.

 

As far as the BPS crew are concerned consequences are for other people.

 

So bad it actually may do some good. It's been near impossible to warn about this for the last year, that this would inevitably happen, it was too gloomy. This op-ed however is so bad and offensive that it makes all the points at once in a neatly, and incompetently, packaged whole. It opened up the curtain and showed the naked wizard-emperor's butt.

This kind of thing is usually done through euphemisms and thinly-veiled attacks construed as valid "I'm just asking questions here". Not this, this ignored all pretense at civility or basic respect for reality and basically presented the issue as it really is, in full ugliness and incompetence: offensively ignorant and prejudicial.

It will be a massive own goal. The usual BPS ideologues have learned over the years that they must lie just the right way to say what they mean in a way people understand that they tell themselves we can't, they are very careful of the language they use precisely because of their experience doing the same thing over and over with individuals. This guy said all the things other think but he said them out loud. Not everyone has political chops. The author of this trash doesn't.

 

I've read that Devine article three or four times now. Each time I reread it I am struck afresh at how awful, nasty, and mean it is. It's as if the man is throwing his toys out of his pram in one almighty tantrum. The man seems to be terrified that his new career is going to fizzle out just as he was getting somewhere. And if it does happen the way he fears, it will all be the fault of those mad, whinging, lazy, attention-seeking, malingering patients.

 

This article is written so strangely, carelessly - it's insulting from it's core. It's one of those articles, where even if it was true it would be insulting to post a picture of a ill person with an apple-chasing device on his head. Are patients too ignorant to see what's going on? There is even an almost homophobic undercurrent to the comment on body-politic and a personal dig at Francis Collins that questions his capacity to interpret data.

The author conflates me/cfs with "chronic fatigue", even in context of solve me/cfs, but the real carelessness in the unsupported assertions about illness progression and origin. Like suggesting long covid will get worse from labelling it organic and the media perpetuation of illness are serious accusations. Where's the evidence? On the upside, the author also uses psychosomatic as often as possible, good to get the freudian hogwash out in the open.

Then there is poor logic. Half the article is an attempt to connect patient's illness beliefs to positive serology, which doesn't say anything about long covid existing or not. Just kind of suggesting it without actually connecting any dots. The great irony is the only support of the psychosomatic angle is a vague "mainstream medicine" claim. One persons belief matters, the other's does not. Also, what's that bit about only older people can experience real post-covid? I mean that's just factually wrong on every level.

If I had long-covid, I would be so pissed, I can't imagine this will have the author's desired effect. I would love to see Francis Collins respond, but obviously that's unlikely.

 

From the article

This again.

Many of us were relieved to be diagnosed with ME or CFS.

Many of us got sick before the arrival of Dr Google or any other search engine for that matter & knew nothing about it apart from it was something that happened to yuppies or what the BPS reported to the papers.

So, being diagnosed with something that could be addressed by changing behaviour etc, something that I could fix myself or at least get control of was a million times better than lots of other possibilities.

To this day people who don't have ME know little to nothing about ME. To this day, thanks to the decades long publicity campaign run by the BPS, people with ME are too stigmatized to be open about the devastating reality of life with ME.

Thanks to the stranglehold the BPS brigade have had on the illness over the last 30+ years most people initially learn about ME from the pro BPS point of view after they get sick.

The last 30+ years have demonstrated that the statement made in the quote is entirely false. Regardless of a person's race, creed, nationality, socio-economic status or their beliefs about their illness and prognosis BPS therapies do not work.

Now eff off out of our way so we can make some progress because, unlike you Devine, most if us had constructive work to do & we'd like to get back to it. Work that actually helped people and made a difference.

 

https://twitter.com/user/status/1374465194814894080


German anti-lockdown activists are championing that Gaffney piece as their newest killer argument, mainly because "it's from Harvard!!1". Even if Gaffney was acting in the capacity of an official mouthpiece (he wasn't), know what else is "from Harvard Medical School"? The Osher Center for Integrative Medicine. I will never understand how the same type of person that generally is staunchly anti-credentialist, is so quick to eat anything up that plays to their preconceived notions.
Hell, some are explicitly urging not to read the comments, since they are filled with "Long COVID activists." God forbid some nuanced discussion would expose our imagined scientific and moral high ground for the sham it is. None of this is even BPS motivated per se, but rather two groups that generally have little to no common ground finding an ulterior cause to fight for, and we're finding ourselves caught in the crossfire. It'd be a sight to behold if it weren't this depressing.

https://twitter.com/user/status/1374487172451987461


Not sure about you, but I sure wish that the whole "poor initial quality of evidence == any given working hypothesis is just a baseless myth" adage had ever worked in our favor, w.r.t. deconditioning, false illness beliefs, etc. I guess the key difference is that a lot of research into LC is patient-led, and thus subject to much more scrutiny. Still, it's just ironic, simultaneously calling for better research, yet speaking out against all the funding that pwME could only dream of having had, which could've prevented us from ever being used as a cautionary example in the first place. Sampling is often poor, and I also doubt that *all* of those seronegative cases are false negatives, but I don't fully understand the limitations of PCR+serology testing, and it'd be cool if someone could fill me in.

Though, I could also imagine that many suffering from seronegative LC incidentally suffered from PVFS not-otherwise-specified, because it's not like those magically stopped happening. Many were just historically given different names, based upon what their respective proximal cause was. But apparently this can be immediately conflated with the whole thing being psychosomatic, especially when we throw a bunch of other conditions into the mix that bear absolutely no resemblance to ME whatsoever, other than that the underlying pathology is unclear, and that the symptoms are "vague and nonspecific", such as fibro and POTS. Nonspecific being just another buzzword, considering that you can add up a bunch of "nonspecific" symptoms and end up with a quite specific construct. What did they expect, our skin to turn blue or something?

Also, preemptively disarming any sort of constructive dialogue by playing the "wouldn't want to commit an ad hominem, would we? " card is just rich, especially considering how the piece is so poorly researched and reasoned that it could be construed as just that.

I'm sorry for the rant, but I just don't get it.

 

Just seems like the latest in COVID apologists.

'I mean yes, COVID was a violent misogynist when he was young, but COVID is a different person now! You'd like him if you just gave him a chance and got to know him better!'

 

I've not read the article. It's behind a paywall and I actually don't want to anyway - I can imagine what it says, these opinions are not new. I'm pretty shocked by the illustration though, it's really horrible and insulting. Even if Long-C patients were suffering from psychosomatic illness, I don't understand why that would make it ok to insult them. Psychiatrists are supposed to treat patients with mental illnessess not caricature them in national newspapers. Disgusting.

 

The overlap between LC deniers and anti-maskers and anti-lockdown, "fear is the real pandemic", is almost a perfect circle from what I have seen so far. Not very surprising for people whose sole driving force is whether something happens to them, making it real, or not, meaning it's obviously false since it's not happening to them.

The argument over positive tests is amazing in itself. This is literally what is expected. Most people who wanted a test could not get one, this is a widely known fact. This is still largely true today. A US senator, Tim Kaine, has mild Long Covid symptoms. He was not tested, was told they didn't have enough at the time. A US senator could not get tested when showing symptoms and there being known cases among his colleagues. By the circumstances of how the last year unfolded, it is literally expected that most with LC will not have a positive test, because most did not get tested. Finding the opposite would have been massively puzzling.

Shows the complete inattention to contradictory details. Or to any details, frankly. When you literally point to something that is expected and use it to dismiss the very existence of the whole, reason has gone out the window a long time ago. Very much like the standard formula of "somatization", a point very often made by deniers, that having the common symptoms of illness basically guarantees there is no disease. Also that it's common, therefore not real. A reverse Occam's razor where the likeliest explanation, the one with the fewest assumptions, is rejected precisely because it's simply too suspiciously likely.

In hindsight, modern medicine retaining 19th century ideas is a bad thing. Not that we needed hindsight to know this but still, it's very bad.

 

I think it also shows their absolute panic and anxiety over economic issues. Their virulence is akin to 'the sky is falling'.

It seems to me that the people who are simply following the guidelines are the ones who are following the 'keep calm and carry on' motto rather better.

 

On the plus side, he's a resident/intern, which means he'll have several decades ahead of him... in which to try to live this down.

 

Trial By Error: Clueless Wall Street Journal Op-Ed Endorses PACE as the “Prevailing View” Among Docs

Long Covid stories and commentaries seem to be everywhere—too many to keep track of! This week, The Wall Street Journal published an opinion piece about long Covid and ME/CFS that is breathtakingly ill-informed—and more importantly, just wrong. Beyond that, it showed remarkable disrespect for patients and their experiences.

https://www.virology.ws/2021/03/25/...orses-pace-as-the-prevailing-view-among-docs/

 

Chief editors for editorial and opinion pages at WSJ:

https://www.wsj.com/about-us?mod=wsjfooter

I have no idea how something so ill-informed and full of hate managed to be OK with these two.

 

the editorial board is really composed of troglodytes

 

I see. That would be worrying in so many ways that extend way beyond this then.