BPS attempts at psychologizing Long Covid

Andy said:
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/
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Prof. Vincent Racaniello has shared it on Twitter

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dave30th said:
It is Fox News but not quite as bad. In contrast, the WSJ news coverage is not considered a right-wing bastion.
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To put this in perspective, I think it was last year that the news side loudly complained about the editorial side making them look like fools. No one expects the WSJ editorial pages to be factual, it's pretty much the point that they aren't.
 
rvallee said:
To put this in perspective, I think it was last year that the news side loudly complained about the editorial side making them look like fools. No one expects the WSJ editorial pages to be factual, it's pretty much the point that they aren't.
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People often used to joke that it's like buying two publications for the same amount--decent news coverage and extreme opinions. But under Murdoch the news side has suffered.
 
One lingering question I have about the WSJ article, I read on screenshots. Does the link *prevailing* view just link to the PACE trial or does it link to evidence that it is the prevailining view.

Because it would be, frankly incorrect to make a statement about the prevailing view and then cite the pace trial, a treatment protocol study. I don't really understand it. Seems amongst the doctors in my region of the country and in the media, and US institutions, it is decidedly not the prevailing view.
 
dave30th said:
Yes, it links directly to the PACE trial. That's it. The PACE trial is the "prevailing view" in the medical profession, or at least it's the prevailing view in the psychiatry department at McMasters
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Of course referencing a trial of CBT/GET as the "prevailing view" of ME/CFS means that this treatment does imply it is a psychiatric disorder. This contradicts the claims from certain prominent UK people who keep insisting that just because CBT is used as a treatment doesn't necessarily mean that ME/CFS is a psychiatric disorder.
 
A weekly, Norwegian newspaper - Morgenbladet - has an article about Long Covid where among others Wyller is interviewed.

The article is paywalled, but here are some google translated quotes, and it seems he gets a bit resistance from another researcher (Langeland):

Wyller is one of the country's leading experts on chronic fatigue syndrome or ME. There has long been a storm around this research because patient organizations and activists react negatively to research that is not only oriented towards biological and medical explanations - among other things because many have experienced not believing that the disease is real. Wyller is one of those who believe that social and psychological factors must also be taken into account in order to understand the disease - and who emphasize that different types of cognitive psychology can be helpful for many of the patients. This perspective emphasizes that there is no simple distinction between the nervous system, thought patterns and the body's function in general - rather, it is full of complex interactions. One explanation for ME may then be that a stressed nervous system has got stuck in some tracks from when the patient was acutely ill. In that case, it is important to get the nervous system to perceive and interpret the body and the environment in a different way. The controversy in the ME debate is largely about whether this can be achieved through psychological methods and gradual training or not.

Wyller is now working, together with an international network of researchers, on a major research project that will follow young people who become infected with the coronavirus. Then they will see if any of them develop chronic fatigue syndrome, and maybe find out what makes them vulnerable. The plan is to follow 500 young people for at least six months from the time they are confirmed infected. Along the way, they are examined with a wide range of tests: genetic analyzes, studies of the immune response and nervous system, mapping of personality and medical history - everything is necessary to form a holistic picture.

...

- I am convinced that more people get symptoms if everyone walks around and is afraid of these ailments. It is extremely important not to dramatize and give the impression that very many become very ill, says Wyller.

- But it is difficult, because this is also a very real phenomenon that deserves public attention. And it is of course crucial that individual patients are taken seriously - the condition is completely real and can be severely disabling, regardless of the underlying causes. This requires some wisdom both from us in the health care system and from the press.

Nina Langeland in Bergen says this is an issue they can not deal with.

- No, I certainly do not believe in hiding research findings for most people. Besides, it is my experience, after 35 years as a clinician, that it is wise to listen to what people say - they are incredibly often right.
 
Kalliope said:
- I am convinced that more people get symptoms if everyone walks around and is afraid of these ailments. It is extremely important not to dramatize and give the impression that very many become very ill, says Wyller.
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What an arrogant assumption.

I got ill at about the 30 age mark. Fear of becoming ill was the very last thing on my mind, I was too busy planning my life and career and getting stuck in.

This idea that we were all lying on our chaise longues worrying that we might become ill &, if we did, that we wouldn't recover is cr@p.

The last 30+ years have proved it's cr@p. The only information most people had about ME was what they read in the newspapers which was steeped in BPS falsehoods.

When people.were sick they were discouraged from joining patient groups and, unless they were "lucky" enough to be treated with benign neglect, the first things they learned about ME came from a pro BPS point of view.

When I was well, despite having lived with someone earlier in my life with a chronic health condition, I didn't really have much of an idea what chronic ill health would mean for me. If I was going to worry it would have been primarily about getting something terminal. Not something that might make ME a bit tired for a while - which was the prevailing view of ME.
 
I know I've been banging on a bit recently about this fear of being ill causing, making illness more severe or perpetuating illness recently.

I think we can all.see they are going to carry on using this tired old argument and probably throw in about the spread of fear through social.media etc....

in reality the possibility of long covid occurred to precisely no one - ME community aside. Even though it really should have but when you've been brushing things under the carpet for so long who wants to take a peek under there?

Long covid sufferers took to social media because they were sick and weren't getting the support they needed. Not the other way around.

I think we can and should use the history of the ME community to demonstrate their hypothesis isn't true & has already been disproved by the field of BPS "medicine".
 
Snow Leopard said:
Of course referencing a trial of CBT/GET as the "prevailing view" of ME/CFS means that this treatment does imply it is a psychiatric disorder. This contradicts the claims from certain prominent UK people who keep insisting that just because CBT is used as a treatment doesn't necessarily mean that ME/CFS is a psychiatric disorder.
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Good point, and the WSJ guy specifically says it's a mental illness. They're contradicting themselves in promoting CBT/GET. Like the ones who oppose the NICE draft can't agree if GRADE is not suitable or if GRADE is great but horribly applied by NICE. Both can't be true.
 
@dave30th in his virology blog article:

Come to think of it, the open letter to The Lancet has no signatories from McMaster University. Now maybe we know why.
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I thought that if there is a reason that nobody at McMaster was open to the PACE criticism presented in the open letter, then it's more likely due to their EBM program's (Guyatt) connection than to a junior doctor -- see:

http://www.clarityresearch.ca/

https://www.s4me.info/threads/bmj-r...-grade-working-group.19317/page-8#post-328667

The general impact of the pseudo-EBM / GRADE / Cochrane club and its official acknowledgment by highly regarded institutions like the BMJ and the NHS in the UK and Norway might have helped a junior Psychiatrist loyal to his University to absorb an interpretation of EBM that is convenient for his own view. This might have encouraged him to write an article ridiculing patients, (patient) researchers and all those who take post viral illness seriously.

What I'm more concerned about is the acknowledgment the pseudo-EBM / GRADE / Cochrane club receives, also in terms of funding and cooperation with public health care institutions on a national level in the UK and other European countries, e.g. with regard to their "magic app":

https://www.s4me.info/threads/nice-...line-for-managing-covid-19.19756/#post-333941

On a more encouraging side, the landscape of academic and health care institutions where the PACE view prevails seems to be becoming more and more fragmented nowadays, and isn't even coherent inside powerful organizations like NICE.

Apolologies for being repetitive, but I think the less researchers and patients make false and easliy to disprove claims about biomedical pathogenesis, the less false claims about a likely psychological cause and the benefits of behavioral treatments will have a chance to fill the gap and to be accepted by health care providers.
 
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Medium: At What Point Does medical Gaslighting and Patient Blame Become Negligence and Malpractice? COVID-19 Long Haulers Quote Their Providers
By Karyn Bishof

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The experiences we have faced with the unknowns, medical gaslighting, medical neglect and malpractice, patient blaming, and ego's too large to admit they just don't know or were wrong have run rampant within the Long Hauler community. It seems like just when you think you have heard it all, another post pops up that causes your jaw to drop and your fist to clench. Sadly, we are not the first population to face this. Chronic illness communities like ME/CFS, POTS/Dysautonomia, EDS, MCAS, Autoimmune and Chronic Pain communities are all too familiar with what Long Haulers are now facing and have been fighting for years, some decades, for providers to recognise, accept, learn about and treat their illnesses. Additionally, most Long Haulers have now become members of the above mentioned chronic illness communities due to their COVID-19 infection, regardless of acute-case severity.
 
dave30th said:
the editorial board is really composed of troglodytes
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Perhaps they are simply ignorant. Difficult diseases are entirely and completely out of their field of expertise. It is after all the journal of Wall Street, not the journal of Everyday Street. Says so right there on the tin.
 
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