BPS attempts at psychologizing Long Covid

dreampop said:
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.
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Interesting and encouraging to hear. Here on the other side of the pond it most definitely is the prevailing view. I don't think the BPS view of things would get dislodged from its pedestal even if PACE got retracted, which it never will anyway. They would just fall back on the Cochrane review or some other thing to justify their position which is impervious to reason. How do you argue with someone who believes that thinking bad thoughts can make you disabled? You really can't.
 
Sid said:
Interesting and encouraging to hear. Here on the other side of the pond it most definitely is the prevailing view. I don't think the BPS view of things would get dislodged from its pedestal even if PACE got retracted, which it never will anyway. They would just fall back on the Cochrane review or some other thing to justify their position which is impervious to reason. How do you argue with someone who believes that thinking bad thoughts can make you disabled? You really can't.
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Spot on. In Australia, PACE still very much embodies the prevailing view of ME/CFS in medicine here. I've told doctors that PACE has been debunked. All it does is trigger the usual eye-rolling.

There's very little that would make them change their minds.
 
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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The WSJ oped section is really bad. Thankfully it's behind a paywall so its societal reach is pretty limited. In Europe, the most progressive publications like the Guardian have been atrocious in their coverage of us, with an unrelenting pro-BPS editorial line. I don't think we have any friends on the left or the right.

Art Vandelay said:
Spot on. In Australia, PACE still very much embodies the prevailing view of ME/CFS in medicine here. I've told doctors that PACE has been debunked. All it does is trigger the usual eye-rolling.

There's very little that would make them change their minds.
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I get the impression that when I tell them about the problems with PACE, it makes them even more convinced that PACE is correct. I don't think anything we (or our supporters) say can change their minds. Maybe they would relent if unassailable evidence of a biological cause emerged, like what happened with ulcers, but since nothing so simple will ever be found in ME/CFS, they will continue to have fertile ground to obfuscate.
 
Kalliope said:
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.
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New article in Morgenbladet - this time an interview with Paul Garner. Also this is paywalled, but here are two google translated quotes:


Recovery Norway is an organization that shares stories about people who, with the help of cognitive and mental techniques, have recovered from medically unexplained diseases such as ME.

Through these, Garner got in touch with a psychologist who himself had recovered from ME in a similar way.

- It was amazing. Suddenly I got another explanation for what happened to me. Having an explanation is incredibly important. I had become convinced that I was disabled, or that there was something seriously wrong with my mitochondria (which control the energy production of cells, editor's note). I saw no end to it.

Now, however, he was told he wanted to get better.

- They explained that this was partly about my neurons firing false fatigue alarms. I had to start thinking positively and exercise carefully. I was better in two weeks. It was like turning on the light!

...

He is concerned that it is important to listen to those who have recovered, and highlights the stories Recovery Norway shares, as very important. For him, it was crucial that someone said to him, "I have recovered, and so can you."

- Just listening to those who are still sick is not what helps, he says.

- You are a professor of evidence-based medicine and was one of the founders of the Cochrane collaboration, which summarizes and evaluates research to provide answers to which forms of treatment give the best effect. At the same time, are you now sitting and talking about how important anecdotes are?

- It is a reasonable question. Hypotheses must be created somewhere. In evidence-based medicine, we say that one does not do a randomized controlled study of whether a parachute works or not. These stories from Norway work a bit like a slap on the cheek. They are extraordinary. This "turn on the light" moment I'm talking about - it's real, says Paul Garner.

Randomized controlled trials are obviously important, especially in biomedicine, when it comes to medicines and small effects. But here the effects are quite dramatic, and it should not be rejected.

ETA:

An of course there's a kick towards ME patients as well:

When people like me come and say that you can actually influence the symptoms with your own conscious thoughts, then people become bonkers. They say I'm just saying "it's in my head". It has been difficult.

- But is not that an understandable reaction? This must be provocative to hear for those who have tried, but where it does not work to just "turn on the light".

- Well, you can not turn on the light without wanting to change anything. I think what we are seeing now is that the langcovid communities are gathering and starting to act like the ME communities, and saying that their symptoms are being denied.
 
Surely, before parachutes were 'perfected', and the underlying aerodynamics understood, there were a lot of studies into whether a particular parachute worked?

Involving people jumping off things, breaking legs, going splat, that sort of thing.

So it's not as if parachutes working wasn't studied, it was just a while ago.

I would imagine that new designs are thoroughly studied, various agencies are keen on that sort of thing before new stuff is given to passers by and they are told to get out of usually perfectly good aircraft.

So, yet another BS piece of 'wisdom' from people who 'should' know better.
 
I don't even get the point he's trying to make. The parachute analogy is generally used by overconfident doctors who think their pet hypotheses have as strong of a theoretical backing as classical mechanics do.
Is he actually convinced both his working model of ME and his assumptions of how the Lightning Process work are "settled science", so to say? This just can't be real.
 
Kalliope said:
These stories from Norway work a bit like a slap on the cheek. They are extraordinary. This "turn on the light" moment I'm talking about - it's real, says Paul Garner
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There were stories like that coming out of Norway after unblinded studies of rituximab. Controlled studies showed it was a placebo effect. Surely as a professor of medicine he cannot be this naive.
 
Kalliope said:
- It is a reasonable question. Hypotheses must be created somewhere. In evidence-based medicine, we say that one does not do a randomized controlled study of whether a parachute works or not. These stories from Norway work a bit like a slap on the cheek. They are extraordinary. This "turn on the light" moment I'm talking about - it's real, says Paul Garner.

Randomized controlled trials are obviously important, especially in biomedicine, when it comes to medicines and small effects. But here the effects are quite dramatic, and it should not be rejected.
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These people cannot help damning themselves. 'I had a chat with Henrik and I saw the light'. Just what we need for an expert on evidence.

How can anyone not see themselves in the mirror to this degree?
I have copied that quote on to my desktop ion case I am asked to give evidence at a judicial review. It should set the tone nicely.
 
Sid said:
There were stories like that coming out of Norway after unblinded studies of rituximab. Controlled studies showed it was a placebo effect. Surely as a professor of medicine he cannot be this naive.
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He is not a professor of medicine. He is a professor of doings sort of evidency things about world diseases at a tropical hospital in Liverpool and chums with those Cochrane people and stuff.

Pretty much anyone can be a professor these days. As I discovered, all you need to do is find someone for whom it is useful to make you a professor. You get points for being a professor but a lot more points for making other people professors you see.
 
Jonathan Edwards said:
It provides real evidence in fact. Just in case we needed one it is a slap on the cheek, a light turning on, except that in this case it is direct and incontrovertible evidence.
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It highlights the absurdity of the whole BPS school.

By the same token those who suffer a more severe form of any disease just need to want to change.

The same logic means those who die of cancer, or covid simply haven't had the right mindset because look at all the people who survived. Deeply offensive.

Mind you, if you want to extrapolate that out you could muse about the difference between people who caught covid in the first place and those who didn't.

Naturally, we wouldn't think that way because members here have elevated their minds above the level of those from the stone ages. We choose rational argument, science and logic over the hysteria and hype favoured by Garner & his pals.
 
Jonathan Edwards said:
He is not a professor of medicine. He is a professor of doings sort of evidency things about world diseases at a tropical hospital in Liverpool and chums with those Cochrane people and stuff.

Pretty much anyone can be a professor these days. As I discovered, all you need to do is find someone for whom it is useful to make you a professor. You get points for being a professor but a lot more points for making other people professors you see.
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Of course, we've all dealt with really low quality people who became tenured professors because the schmoozed the right people in power. I think sadly though to most people his credentials will appear impressive and they will believe him when he says that Long Covid is fake and that he recovered from it using mumbo jumbo.
 
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