Status of CFS/ME (2019) Brinth et al Danish Medical Journal (Ugeskriftet.dk)

[Hoopoe]

When people try to defend PACE, what do they focus on? Is it any of the details of the dispute, or do they think it's to their advantage to present concerns about this research as coming from angry patients who view the research primarily as part of a dispute about whether CFS should be viewed as 'psychosomatic or biological'?

That they misrepresent criticism of their illness model is a sign that this is a weak spot, not that we have to criticize some other aspect. They will never engage with the substance of criticism whether that is illness model or the failure to control for bias in their clinical trials.

In fact they routinely misrepresent their own illness model in the press. That tells you how much it lacks credibility in their own eyes.

 

[Esther12]

That they misrepresent criticism of their illness model is a sign that this is a weak spot, not that we have to criticize some other aspect.

I think it's a mistake to focus on the illness model, when it's almost always been presented as likely to be incomplete and work like PACE is presented as providing a 'pragmatic' approach to CFS. A lot of criticism of their use of various models seems to get things wrong too, partly because it's so difficult to get it right.

edit: Also, I think that the models used are best undermined by focussing on the problems with the details of work like PACE, rather than any focus on the models themselves. That also helps us avoid the meme about 'they just don't like the research because they have simplistic and stigmatising views about sophisticated biospychosocial approaches to illness'.

 

[Hoopoe]

I think it's a mistake to avoid it. To change medicine people need to talk about the stuff within it that is dysfunctional. Even if it makes you feel uncomfortable to question unquestioned dogma. It is the only way to change things.

 

[Esther12]

I think it's a mistake to avoid it. To change medicine people need to talk about the stuff within it that is dysfunctional. Even if it makes you feel uncomfortable to question unquestioned dogma. It is the only way to change things.

I'm certainly not saying that we should not question unquestioned dogma, or that I feel uncomfortable doing so.

I'm just pointing out that tying criticism of work like PACE to concerns about viewing CFS as a 'psychosomatic' illness (particularly when expressed in a simplified or imprecise manner) is something that keeps being used to help strengthen the position of defenders of work like PACE.

 

[Hoopoe]

We do questions explanation that make no sense. For example the idea that XRMV was the cause of ME/CFS. Why should we not question the idea that ME/CFS is perpetuated by thoughts and behaviours? There's nothing in there that is any more convincing than the XRMV stuff.

 

[Hoopoe]

The main difference appears to be that there is an unwritten rule in medicine that says you shall believe in psychosomatic explanations without question. That makes it especially important that we patients, who are apparently one of the few capable of questioning this, express doubt.

This is how some real progress will be achieved.

 

[Esther12]

We do questions explanation that make no sense. For example the idea that XRMV was the cause of ME/CFS. Why should we not question the idea that ME/CFS is perpetuated by thoughts and behaviours? There's nothing in there that any more convincing than the XRMV stuff.

I think it's almost inevitable that there are some thoughts and behaviour that can worsen most illnesses. Do you not think that there are any approaches to you illness that could make things worse for yourself?

In the case of XMRV there was a claim that a specific test could identify XMRV at a higher rate in CFS samples than healthy control, and that was clearly shown to not be true when tested under blinded conditions.

That can't show that it's impossible any virus plays a role in any cases of CFS, and the problems with specific psychosocial approaches to CFS can't show that beliefs and behaviours play no role in perpetuating CFS.

 

[Hoopoe]

You seem to hold biological explanations to the usual high standard while psychosomatic explanations are held to a much lower standard.

XMRV had to involve a specific claim because that is the expected standard in biological sciences. There was an effort to verify the claim because again that is the expected standard.

In contrast, psychosomatic claims can be vague, contradictory, not supported by reliable evidence and they're still wildly popular and rarely questioned. It's basically people making up a story of how the world works and being believed.

It is similar to a religion that occupies the spaces about which we know very little and fills them with comforting stories that tell us what we want to hear ("there's no incurable illness and you can get better with some effort"). If we want to actually find solutions for all illnesses in these poorly occupied spaces we must vigorously question such false knowledge.

Once psychosomatic claims are held to the same standards as other claims, then we might actually find out how much truth there is to them.

 

[Esther12]

You seem to hold biological explanations to the usual high standard while psychosomatic explanations are held to a much lower standard.

Where have I held psychosomatic explanations to a lower standard? I've not seen any specific psychosomatic approach to CFS that could be presented as a legitimate way of treating CFS.

In contrast, psychosomatic claims can be vague, contradictory, not supported by reliable evidence and they're still wildly popular and rarely questioned. It's basically people making up a story of how the world works.

Any specific claims that a vague, contradictory and not support by reliable evidence should be criticise precisely for those reasons. But broad claims about psychosomatic understandings of CFS are not going to be a useful part of that.

I've seen people make confused arguments that the debunking of XMRV somehow showed that viruses were not the cause of CFS - such broad claims from such limited evidence are not persuasive. In the case of challenging work like PACE, broad and simplified claims about psychosmatic understandings of CFS keep being used to help support the PACE researchers.

 

[Hoopoe]

Any specific claims that a vague, contradictory and not support by reliable evidence should be criticise precisely for those reasons. But broad claims about psychosomatic understandings of CFS are not going to be a useful part of that.

Psychosomatic claims should be questioned because even when they are vague, contradictory, lacking real scientific basis they still go on to have a very large influence on politics and healthcare of patients.

 

[Jonathan Edwards]

Whenever disputes are able to be simplified in terms like 'psychosomatic or biological' it ends up stengthening those who want to downplay the problems with research like PACE.

Maybe but it provoked Schröder into revealing the emptiness of his arguments.

 

[Esther12]

Maybe but it provoked Schröder into revealing the emptiness of his arguments.

You're already know what you're talking about though!

There's nothing impressive about Schröder's writing, but I worry that it's more effective as propaganda targeting people who don't know the details when he, and people like him, have the 'psychsomatic vs biological' thing to hide behind.

 

[Jonathan Edwards]

You're already know what you're talking about though!
I worry that it's more effective as propaganda targeting people who don't know the details

There are things I don't know.
The believers will believe.
It is useful for me to have a detailed understanding of how much people in health care systems in other countries do not know what they are talking about. It helps when preparing testimonies for their parliamentary systems.

 

[Esther12]

It is useful for me to have a detailed understanding of how much people in health care systems in other countries do not know what they are talking about. It helps when preparing testimonies for their parliamentary systems.

That is a more positive perspective... I feel like I've seen enough of this stuff!

PS: I feel like I've gone on about this little example in a way that could imply I think it's more important than it is, just because I've been replying to others. I didn't mean to make a big thing out of it.

 

[Hoopoe]

The other day I read about a young woman in Denmark that fainted multiple times throughout a year and recently had a severe crash, with apparent onset of some illness that hasn't been identified yet. She had problems going to the toilet due to extreme fatigue and weakness. Tests at hospital were normal. She was told that these symptoms were due to stress but is sure they are not. What is really meant is that it's psychosomatic.

It's another patient being destroyed by illness because physicians are content to accept psychosomatic explanations with no evidence whatsoever and then stop searching.

 

[rvallee]

It's another patient being destroyed by illness because physicians are content to accept psychosomatic explanations with no evidence whatsoever and then stop searching.

So it remains that the BPS model doesn't have a fig of evidence for its own claims, has essentially disproven itself with the PACE long-term follow-up plainly saying "no difference in outcome between treatment arms". Zero objective evidence 30+ years after having started recommending it. That's miserable failure and the end of road. It would have been a long time ago if not for the suspension of disbelief.

Especially as it's commonly stated that PACE "proves" that ME is psychological when in being a pragmatic trial that's not even a valid conclusion, even more so that it failed to show any benefits despite being maximally biased. It exposes that the evidence basis is so utterly hollow that defenders have to take positions they know to be invalid, that pragmatic trials cannot infer anything about cause. Letting people argue nonsense may be frustrating short-term but it always wins in the end.

People can continue claiming this nonsense if they want, but the evidence simply isn't there for it, that much is a fact. All there ever is "maybe some day it will work". Still firmly at square one. That people reject reality and substitute their own should not change arguments based on the facts. Because beyond PACE, the model has failed miserably in practice. I think this is far more important in the end. People can point to very biased and selective trials that cherry-picked all they want, in practice it has been a complete and total failure. They are welcome to show evidence that it has had a positive impact in aggregate, they cannot and will not.

 

[Esther12]

Professor Ola D. Saugstad has written a comment with a reply from Andreas Schröder.

Saugstad writes among other:

What ME patients require in Norway and Denmark is simply that modern medical methods and principles must also be applied to their illness. The psychosomatic wing calls this "militant", while in reality it is just a reasonable requirement that ME patients no longer be exposed to harmful treatment and outdated attitudes. Unfortunately, for many years, ME patients in both Norway and Denmark have been exposed to some physicians' personal views on the relationship between body and soul, without listening to the patients.

Schröder does not quite agree.

Ny viden om myalgisk encefalomyelitis
google translation: New knowledge of myalgic encephalomyelitis

@Dx Revision Watch links to this presentation from Schröder:

Presentation slides:

https://www.eapm.eu.com/wp-content/...der_Persistent_physical_symptoms_20190620.pdf

7th Annual EAPM Conference, Rotterdam, June 20, 2019

Persistent physical symptoms: Descriptive or etiologically-oriented classification? Implications for treatment

Andreas Schröder, MD, PhD Consultant, Clinical associate professor The Research Clinic for Functional Disorders and Psychosomatics Aarhus University Hospital, Denmark

It lists RecoveryNorway as one of four web resources at the end, and starts by thanking his colleagues and co-workers: Michael Sharpe, Emma Rehfeld, Per Fink, Torben Jørgensen and WinfriedRief.