Norway: Opinion piece on "Facts and myths about ME" by Reme, Flottorp and Wyller

Should have been titled 'Lots of myths and no facts'! The authors come across as sad, desperate folks pushing their outdated & debunked BPS wares no matter how foolish it makes them look to others.

 

I thought that this was more careful than a lot of their stuff for the first half. IMO, they're learning how to produce better spin, and we need to take them seriously.

 

Are you kidding me?! Burnout?! People with burnout have PEM?!

I'm autistic, and like many autistic people, I've experienced extreme burnout in the past. To the extent my functioning declined for weeks to months. The experience was totally different from ME. Notably, my physical functioning was not affected whatsoever. I also recovered with rest.

I'm sorry, this is the most absurd statement in the entire paper and it has me fuming mad because it's incredibly obviously wrong. I'm actually angry about this. Okay, the rest of the article is just garbage, but it's the same garbage I've been sifting through for a year. Claiming people with burnout have PEM is brand new.

 

At least it does say this is an opinion piece. Made of opinions. Ironic to call opinions facts. "Facts and myths about vaccinations", by Andrew Wakefield. Or "Facts and myths about Scientology", by David Miscavige. Same category.

The amount of pseudoscience in medicine, how welcome it is, is too damn high. It's the fact that the thinking that leads to this is OK that breaks everything, creating pockets of fake knowledge where standards don't matter, facts are irrelevant, and myths are presented as evidence. This is the breakdown of an entire profession, dissembling, discombobulating into narcissistic aggression to save face.

How charlatans who know nothing about this issue can be so arrogant as to think they, and only they, know the truth is a puzzle for the ages, how pseudoscientific thinking can dominate in a profession whose entire credibility is science and accountability. This is the real issue. The pseudoscience here is just the outcome of a broken process in a dysfunctional system. It's the process that fails, the outcome is just the giant red flag of failure.

 

Nina E. Steinkopf and Jørn Tore Haugen has written a response in the newspaper Aftenposten. It has also been translated to English and published on Steinkopf's blog.

quote:

It is disconcerting that the authors believe Wyller’s stress hypothesis is correct, while the world’s largest health authorities and science mediators such as the CDC, NIH, IOM/NAM and NICE are allegedly wrong.

Health professionals must stop spreading outdated and disproved myths about ME. It harms us.

 

Trial By Error: Norwegian CBT/GET Ideologues Take Aim at Critics Who Reject Their Views

Three Norwegian researchers recently published an attack on critics of cognitive behavior therapy and graded exercise therapy as treatments for ME. The article, called “Facts and Myths about ME,” was published by the news organization Aftenposten. The authors, from the Scandinavian arm of the CBT/GET ideological brigades, asserted that “the cause of ME is most likely a combination of biological, psychological and social factors”—but they provided no convincing evidence for this causal claim. (I don’t read Norwegian, so I am relying on Google translate here. I apologize if the translation does not accurately convey the authors’ meaning.)

https://www.virology.ws/2022/11/01/...s-take-aim-at-critics-who-reject-their-views/

 

Related Twitter thread today (more directed at managing the pandemic, so not specifically on-topic, so feel free to delete).

https://twitter.com/user/status/1587170912058712064

 

Yup. And not the first I've seen of this sentiment. Software development is only loosely related to engineering and not regulated and I am constantly shocked at how absurdly low some medical standards can be. Even lower than standards in economics in many places. Basically negative standards in some, like in EBM.

The more I think of it and the more I see medicine being its own separate academic track with their own faculties and everything on their own is a disaster. No discipline is self-sufficient and it allows to retain too much ancient baggage, with medicine being an old discipline that retains old ways of thinking and hasn't modernized for the most part, because they are in their own special bubble.

This model is fatally flawed and needs to end. There are simply too many factors involved in healthcare that require expertise from other disciplines and they seem unable to do this on their own.

 

If any software developer had failed to look into a bug in the same way doctors have looked into my medical condition I would have fired them, I have never seen a programming team have standards remotely as low for scientific inquiry as I have seen routinely in medicine, its not even a competition. Software development is hardly a high discipline engineering field, it produces a lot of bad solutions due to a slapdash effort and rushed development but to misattribute bugs by lying about them is definitely misconduct worthy of firing and that is just routine and normal in medicine.

 

It is a concerning question: how careful or exacting are some medical practitioners in their work? Are they demonstrating their carelessness when they turn around and denigrate patients for being accurate. Are these health care providers sloppy?

 

People do their job, no more. Here it's not expected that they should be careful, as the issue as been de-medicalized. It exempts them from any obligation, literally not their job as far as they are concerned. And more importantly: as far as their employer is concerned. They are doing their job, by not doing it. It's what they're expected to do.

They'll be diligent about the possibility of other issues, what's expected of them as part of their employment, which will be assessed according to how they fulfilled the work that was expected of them. They are not expected to be diligent, or care at all, about this issue. In fact can pretty much get in trouble for it.

This is the system working as designed. It's just that it turns out it was designed poorly, lacking accountability and oversight in many places, a historical blunder that will need to be fixed, but the weight of traditions is often too much. Medicine can't even get rid of its hazing and bullying culture, no matter how harmful it is. The profession seems to be stuck in time, half expert profession, half organized church.

 

A huge thank you to @dave30th for writing a reply to this opinion piece. It was published yesterday on the newspaper's website:

Tullprat om ME
google translation: Nonsense about ME

quote:
In a debate article in Aftenposten on 26 October , three Norwegian researchers (Silje Endresen Reme, Signe Flottorp and Vegard Bruun Bratholm Wyller) attack the criticism of psychological behavioral therapy for the devastating disease myalgic encephalopathy , or ME. They claim it is "thoroughly documented" that "cognitive behavioral therapy and graded activity adaptation can make many ME patients healthier". They also claim that "it is fraudulent to claim that there is scientific evidence that such treatment makes patients sicker".

The "documentation" they refer to comes, by and large, from research which, in its claims about effectiveness, is based only on self-reported, subjective results. It is a research design that is fraught with large systematic biases.

 

@dave30th has received a response from Henrik Vogt

google translation:
ME: Recovery Norge's stories show that you can recover

quote:

Finally, Tuller writes that our stories are not suitable for supporting the claim that one can be "completely cured of ME with the help of cognitive techniques". Our stories are not suitable to say statistically how many people can recover through such methods, but they strongly suggest that it is possible. When many stories show a striking effect, closely linked in time to an intervention after a long illness, it is hardly accidental.

Many researchers and experts in evidence-based medicine would agree with this, and it opens the door for further research.

 

Vogt is either strawmanning or demonstrating his lack of familiarity with basic concepts such as systematic bias.

 

At the same time, the problems with bias around recovery anecdotes are similar to the problems with anecdotes of harm.

Saying that, there are lots of reasons to be critical of the way Vogt and Recovery Norway operate.

edit: I find that things can get lost in translations:

Did Tuller say this? I couldn't see where, or the context.

Also, can anyone clarify the meaning of the term translated to 'unverified'?

 

Yes, those attacking claims of harm, very much fail to be objective about the available evidence balance.

Anecdotes of harm are sufficient to put a drug treatment on hold, so the same should apply for other forms of treatment. Anecdotes of success might be indicators for further research but not for universal application of the treatment to everyone.

If there are anecdotes of both harm and success from a treatment anyone providing that treatment needs to be able to distinguish between who will suffer and who will benefit before applying it universally or if offering it as an experimental intervention give accurate probabilities for being hurt or benefited before they can claim any informed consent. How many proponents for say GET point out the surveys indicating a majority of recipients experience no long term benefit or even significant harms to their patients.

This imbalanced approach is reinforced by the many anecdotes from such as participants in such as the PACE trial or recipients of LP who claim they tried to report harm, but that they were disbelieved.

Also the information on harm resulting from GET and CBT is very different quality to anecdotes of success pushed by interested parties. Those pushing anecdotes of success either give/report personal perceptions of individual clinicians that are never quantified or independently verifiable, or single case studies that are also usually independently unverifiable. In contrast the evidence of harm is consistent with current understanding of PEM and comes from large surveys, where there are effectively thousands of anecdotes of harm and where reports of success in these surveys are invariably very much a minority. Also different independent surveys are reasonably consistent with each other.

 

It's basically clear that they can say anything they want, no matter how silly, and it makes no difference. His whole argument, verbatim, is that "it is possible". I assure you that it is possible for the Moon to fall on the Earth. There is nothing preventing it physically from happening. It will not happen to our Moon, ever, but it is possible for it to do that, it just won't. This is not even an argument, what a bunch of insane nonsense.

So Vogt got a right-to-reply-to-the-reply, I assume Tuller will not be granted a right-to-reply. Always the right to the last word, even when it consists of incoherent bleating.