BPS attempts at psychologizing Long Covid

How, specifically?

 

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.

 

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.

 

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.

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.

 

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.

 

The ultimate insult.

 

I don't know. I prefer "The bastards don't want to get better"

(becoming very angry with patients, in one clinical trial some nurses viewed severely ill patients as "The bastards don't want to get better"[12] ~ Nurse supervisor, FINE trial)


https://me-pedia.org/wiki/Ethical_issues

 

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.

 

Maybe he isn't?

 

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.

 

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.

 

But his account of his Vogtian epiphany is actually quite breathtaking. Real you might say. Catastrophically ironic.

 

It makes the BPS approach look like an emotionally-based belief system in search for confirmation.

 

For some reason that put me in mind of Vogons.....

 

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.

 

Perhaps the t was slipped by his mum to confuse people.

 

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.

 

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.