A new consensus? - ME/CFS skeptic blog

[ME/CFS Skeptic]

I've written some of my thoughts about the new reports and guidelines on ME/CFS that have been published over the past 5 years.

They seem to form a new consensus, one where PEM is a required criterium for ME/CFS, where GET is no longer recommended and CBT is proposed as a supportive treatment.

This is an important step forward but there are also some strange things about these reports. For example, the CBT they describe is usually a supportive version to help patients cope with their symptoms, not the psychosomatic version that was tested in trials and that aims to cure ME/CFS by tackling kinesiophobia and deconditioning. The guidelines happily use the results of the trials, however, to argue that the supportive CBT they describe is evidence-based. It does not make much sense to me.

The full blog is available here: https://mecfsskeptic.com/the-new-consensus/

Am interested in hearing your thoughts about it.

 

[InitialConditions]

For example, the CBT they describe is usually a supportive version to help patients cope with their symptoms, not the psychosomatic version that was tested in trials and that aims to cure ME/CFS by tackling kinesiophobia and deconditioning

The deconditioning and exercise avoidance hypotheses were *foundational* in the justification for ME-CBT and ME-GET. If you remove them, the whole house of cards collapses. They've really got themselves in a muddle, and patients will be better of if the BPS lot just admitted as much.

 

[InitialConditions]

"The solution presented is a Belgian compromise, one that everyone can live with but that makes no sense at all."

Exactly. I did not know this term existed, but it captures the situation well.

 

[Shadrach Loom]

Very solid piece. Good to see cakeism exposed.

 

[InitialConditions]

Another great blog, Michiel. Have you considered submitting this to a journal as a sort of comment / view piece? It is definitely good enough.

 

[ME/CFS Skeptic]

"The solution presented is a Belgian compromise, one that everyone can live with but that makes no sense at all."

Exactly. I did not know this term existed, but it captures the situation well.

I don't think it is an official term though, probably more like slang.
https://www.vlaamswoordenboek.be/definities/term/Belgisch compromis

Don't have plans to submit this to a journal, it was more a case of writing down my thoughts before I forget. It is interesting to see how these new reports on ME/CFS from around the world are similar.

 

[Hoopoe]

I suspect the reason that GRADE does not allow for the possibility that a study is so bad as to be useless is that it wants to be attractive to the industry. In practice it's probably possible to sell a treatment even with marginal or dubious benefits, so what the industry needs from a system like GRADE is at least that. But a clear statement that a treatment is useless would be a problem when it came to selling the treatment, so it must be avoided.

And systematic reviews seem to be needed only in those situations where the treatment effectiveness is not clear to begin with.

 

[Robert 1973]

Excellent as usual. Thanks @ME/CFS Skeptic. [Edit to add – a very useful summary with some details I wasn’t aware of.]

What if there is a flaw that makes the study results useless? This seems to be a dead angle in the GRADE system.

I didn’t know the term dead angle. I think your English may be better than mine now. “Blind spot” is a more common expression but perhaps that has a slightly different meaning.

The problem, however, is that the reviews pretend that the evidence from randomized trials applies to the CBT version they made up instead of the CBT that Bleijenberg and the PACE researchers used.

I think you could have made it clearer that there is no reliable evidence for curative CBT. We therefore have the absurd situation where CBT proponents are trying to promote the effectiveness of their supportive type CBT by pretending that it’s the same as PACE-type CBT which has been tested endlessly without ever producing any reliable evidence that it is effective!

I appreciate your that you present this information, I just felt this point could have been clearer – particularly given the difficulty that some BPS proponents seem to have understanding some very basic concepts.

It’s not so much that they want to have their cake and eat it. They are trying to have an imaginary cake which never existed (or went mouldy a long time ago) and eat it.


I also wonder if we can go further than saying that there is no evidence of effectiveness and actually say that there is good evidence that CBT/GET don’t work. But you’re probably wise to stick to more cautious language. In fact, that is one of the things I appreciate about your writing – in contrast to much of what is written about ME/CFS elsewhere, both from BPS proponents and critics.

 

[ME/CFS Skeptic]

We therefore have the absurd situation where CBT proponents are trying to promote the effectiveness of their supportive type CBT by pretending that it’s the same as PACE-type CBT which has been tested endlessly without ever producing any reliable evidence that it is effective!

It’s not so much that they want to have their cake and eat it. They are trying to have an imaginary cake which never existed (or went mouldy a long time ago) and eat it.

Good point. The situation is so absurd it is hard to describe accurately to outsiders.

 

[rvallee]

Very good summary of where we are. Which is a very bizarre nexus of trying to bridge reality with fiction, and a bunch of lies. The kind of consensus where nothing happens because one side, dedicated to sabotage, is fine with indefinite paralysis and inflicting infinite harm onto millions. They basically win if nothing happens, e.g. Cochrane.

One thing I find most disturbing in all this is that multiple such agencies have reviewed the evidence, found that it is lacking, but seem to find no problem with the fact that those treatments have been commonly used for many years. Not only coercively, but claiming etiology (PACE=proof that it's psychological) on their basis, despite pragmatic trials not allowing that. Or even that the treatments "tested" are often different from the ones actually used. Which is just disqualifying as professionals.

The fact that treatments devoid of evidence are commonly, and often coercively, used should be disturbing to any self-respecting professional. And yet no one seems to have the courage to say it. Especially as there is deliberately no way to report issues with those treatments. The ethics of this entire paradigm are seriously shocking. But it's all politics, all the time.

Quick correction: "one where PEM is a required criterium for ME/CFS, where GET is no longer recommended and CBT is proposed as a supportive treatment", should real "criterion" instead of criterium (which apparently means a bike race, uh, TIL).

 

[Trish]

Thanks for a good summary of some of the key points about GET and CBT in guidelines.

I think the section on CBT is particularly important as those assessing the data for the different guidelines may not have been aware that the directive CBT in trials such as PACE was completely different from supportive CBT.

As you rightly conclude, there is no evidence for supportive CBT from clinical trials. Yet it is recommended for helping people with managing pacing with no evidence to suggest it is any better than help from a well informed nurse, OT, doctor, physio or expert patients. And supportive CBT for emotional support to help cope with the major life changes ME causes can, from my experience, cause significant and long lasting harm.

 

[ME/CFS Skeptic]

I often have the impression that ME/CFS is an edge case in medicine, one where the advocacy community is quite active and vocal and thus exposes a lot of the deeper problems. These include:

• The popularity of unfounded psychosomatic theories for illnesses that medicine cannot yet explain or measure.
• The problem with lack of blinding and subjective outcomes in non-pharmacological trials.
• The checklist-methodology and bias ceiling in tools that evidence-based reviewers use to grade evidence.
• The problem with exercise, CBT, and rehabilitation as cure-all therapies for which it is taboo to question their usefulness.
• Lack of active patient/consumer involvement in the design of scientific studies.
• etc.

For me, it feels like we are bumping into a lot of problems in medicine that are too big for the ME/CFS community to solve on its own.

 

[ME/CFS Skeptic]

Quick correction: "one where PEM is a required criterium for ME/CFS, where GET is no longer recommended and CBT is proposed as a supportive treatment", should real "criterion" instead of criterium (which apparently means a bike race, uh, TIL).

Thanks, changed it.

A lot of my English grammar or spelling mistakes are the result of translating a Dutch word a bit too literally. Same with 'dead angle' which comes from 'dode hoek', the space in traffic that truck drivers have hard time seeing.

 

[NelliePledge]

Thanks, changed it.

A lot of my English grammar or spelling mistakes are the result of translating a Dutch word a bit too literally. Same with 'dead angle' which comes from 'dode hoek', the space in traffic that truck drivers have a time seeing.

In the olden days when I was studying languages these were known as false friends.

 

[cassava7]

This ‘checklist methodology’ of assessing bias has made reviewers malleable to researchers who repeatedly use the same flawed trial design to promote their theory. (…) Their methodology overlooks the possibility of a critical flaw, one that does not downgrade the quality of evidence with 1 or 2 levels but makes it entirely useless. Even a small hole can make a ship sink.

This made me think about fiscal optimization / tax evasion. Whether trialists do it knowingly or not, it is as if they were jurists or lawyers at corporate firms who are exploiting loopholes in these evidence review frameworks, such as GRADE, to avoid having their trials downgraded to a “very low” rating. Normally, frameworks are expected to evolve and fix these gaps as they are uncovered but as we have seen time and time again, it is not happening in medical research.

 

[rvallee]

This made me think about fiscal optimization / tax evasion. Whether trialists do it knowingly or not, it is as if they were jurists or lawyers at corporate firms who are exploiting loopholes in these evidence review frameworks, such as GRADE, to avoid having their trials downgraded to a “very low” rating. Normally, frameworks are expected to evolve and fix these gaps as they are uncovered but as we have seen time and time again, it is not happening in medical research.

I'll avoid the source material because it's political, but there's a really good video about this phenomenon titled "The card says Moops".

It's about exploiting an obvious mistake, allowing to pretend to respect the letter of the law, while violating the spirit. Especially while knowing it goes against the spirit. It's a technical win that only a dishonorable person would take. And yet here we are. With us, it doesn't even matter if we're proven right, it's always argued that we did it wrong, because the evidence is irrelevant, it's all about politics and we have zero power. Instead it's said that we're dirty activists who violently forced authorities to comply with our demands. Or whatever. Which is clearly insane. And I really do mean raving on a street corner insane. Pure conspiracy theory crowd stuff.

It's inspired from a Seinfeld episode where George, a character known for being a pathological liar and having no moral compass, is playing a quiz game where the solution card has a misprint. It's clearly wrong, but it abuses a loophole that assumes that the answer cards are correct. Since the rules will clearly state that the solution cards determine who wins a round.

 

[Kitty]

Thank you, it's a really good read. Definitely one to bookmark and re-read next time I can't get the words out myself.

A lot of my English grammar or spelling mistakes are the result of translating a Dutch word a bit too literally. Same with 'dead angle' which comes from 'dode hoek', the space in traffic that truck drivers have hard time seeing.

British folk do call this the blind spot, so you were absolutely right!

 

[Wyva]

In the olden days when I was studying languages these were known as false friends.

I think this is more of a case of Dunglish. Eg using expressions or words from your language (Dutch) that you assume to be the same in English.

False friends are words that are very similar in two languages but have a different meaning and can be downright misleading, that's why they are false friends (maybe they share an etymological origin hence the similarity). I can only give Hungarian examples here: actual - aktuális (meaning current), gymnasium - gimnázium (a type of secondary school), college - kollégium (dormitory) etc. You think you can guess their meaning just by looking at them but your guess will probably be wrong.

 

[ME/CFS Skeptic]

I think this is more of a case of Dunglish. Eg using expressions or words from your language (Dutch) that you assume to be the same in English.

Van Gaal, the Dutch football trainer said during the world cup that he believed that "we can come an end".

Another favourite that is frequently used in Flemish jokes is: "Make that the cat wise". It is a literal translation of tell that to the cat, meaning I don't believe you, you're not fooling me.

 

[josepdelafuente]

I've written some of my thoughts about the new reports and guidelines on ME/CFS that have been published over the past 5 years.
...
The full blog is available here: https://mecfsskeptic.com/the-new-consensus/
Am interested in hearing your thoughts about it.

Great job! Very clear and concise. No blind spots in your vision!