Facts and Myths about Chronic Fatigue Syndrome, 2022, Per Fink et al. (Danish Medical Journal article)

https://ugeskriftet.dk/videnskab/fakta-og-myter-om-kronisk-traethedssyndrom

VIDENSKAB | Statusartikel
| 23/05 2022 KL. 8:00
Fakta og myter om kronisk træthedssyndrom


Forfatter(e)
Per Fink1, Mathias Skjernov2, Line Kirkeby Petersen3, Charlotte Forstrøm4 & Marianne Rosendal1

1) Funktionelle Lidelser, Aarhus Universitetshospital, 2) Center for Funktionelle Lidelser, Sjællands Universitetshospital, Roskilde, 3) Center for Funktionelle Lidelser, Vejle Sygehus, 4) Center for Funktionelle Lidelser, Aalborg Universitetshospital

Ugeskr Læger 2022;184:V12210943

pdf-udgave
Den netop opdaterede guideline til behandling af myalgisk encefalomyelitis/kronisk træthedssyndrom (ME/CFS) fra det britiske NICE (National Institute for Health and Care Excellence) bryder afgørende med den videnskabelige evidens på området [1]. I det følgende vil dette blive uddybet. Samtidig gives et kort historisk oprids samt status mht. evidensen på området [1-6]. For en mere klinisk og praktisk tilgang til ME/CFS henvises til Lægehåndbogen [7].

Hovedbudskaber

• De opdaterede NICE 2021-guidelines til behandling af myalgisk encefalomyelitis/kronisk træthedssyndrom anbefaler ikke længere gradueret genoptræning og kognitiv adfærdsterapi. I stedet anbefales energistyring.
  
  
• Evidensgrundlaget har ikke ændret sig – det har alene NICE-komitéens fortolkning af det.
  
  
• Der findes derfor ikke grundlag for væsentlige ændringer i behandlingsanbefalingerne i Danmark ud over at sikre behandlingskapaciteten.
  

 

Google translate: https://ugeskriftet-dk.translate.go...uto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

There's a lot of claims in there about what was said, why things were done, etc, that are not supported by quotes.

Maybe @adambeyoncelowe would be interested in it?

 

Just saw that Fink paper is now largely behind a paywall. The pdf still seems accessible: https://ugeskriftet.dk/files/scientific_article_files/2022-05/v12210943_web.pdf and that is archived here: https://web.archive.org/web/2022052...tific_article_files/2022-05/v12210943_web.pdf

It now needs to be manually translated though. If anyone did that, it could be worth attaching a copy here.

 

Uh, I could read it last night. In full. They probably published it open access by mistake and locked it after.

It's filled with basic errors, misinterpretation, circular sophistry throughout. He actually claims that GET is good because it's used for other diseases, e.g. post-Covid-19. Yes, he is making the argument that GET must be good for ME since it's used for LC, which is justified by the low-quality evidence on ME he loves. Just pure circular nonsense. He is clearly showing that he doesn't know a damn thing about ME, but of course what most physicians think they know about ME aligns with what Fink believes so to most of them it's probably good.

Really shows the basic problem with academic is the exact same as everywhere: who polices the police? Medicine is unable to see its own mistakes because it's looking at its mistakes with the same viewpoint that made it commit the mistakes in the first place.

 

Helmfrid comments the Fink-paper on Twitter:

Danish BPS proponent Dr. Per Fink rants about the new NICE guideline for #MECFS. Fink claims that the NICE committee was driven by consensus among a biased group of specialists, when in fact the committee took a firm stand against biased studies.

 

I couldn't finish reading it, too nauseating. A truly outstanding mix of arrogance and ignorance - wilful or otherwise - and insulting to boot (to patients not accepting his views, to anyone believing those patients, to everyone who worked on the NICE guidelines...)

 

The same journal also has an article about treatment of chronic fatigue syndrome, which seems to be based on Fink's paper, but this too is paywalled:
https://ugeskriftet.dk/videnskab/behandling-af-kronisk-traethedssyndrom

 

Indeed.

Its amazing how obtuse they are, i mean truly staggering. Refusal to see that the NICE committee was actually heavily weighted towards his point of view, to the point that i was very worried that it would be a BPS whitewash, and yet STILL they found the evidence to be poor.

 

Google Translated (partial, it has missed some of the tables).

 

That's great. Thank you! I was pondering on translating it manually when the only thing available was a PDF, but wasn't up to the task. However, please ask if there's something in the automatic translation that's unclear.

 

It is interesting to see this quote regarding the NICE committee

There were over 4,000 objections, and three members with extensive clinical experience left the committee in protest of its recommendations

No authority is cited. I thought the chairman and other committee members had said that there was consensus on the findings. No formal indication appears to have been given as to the reasons for the resignations.

Is this the new modus operandi? Agree when there is an opportunity to object, and object when there isn't.

 

This appears to be what happened at the NICE Roundtable meeting in October. Colleges objecting prior to it, but having no rational objections on the day.

 

Table 1 starts with the unquestioned equation ME/CFS = Neurasthenia, an issue relevant to this current thread: https://www.s4me.info/threads/help-with-advocating.27823/#post-420572

 

@adambeyoncelowe deals with this point at https://www.s4me.info/threads/unite...-including-fiona-fox.3159/page-25#post-420769

Fink is clearly not telling the entire truth. The state of Fink's knowledge on the subject is unknown.

 

Exactly. This is how they operate. Don't debate it honestly, where you have to justify yourself in front of others. Just send a bunch of emails throwing your weight around afterwards, and throw your toys out the pram if that doesn't work.

I am pretty sure you can find statements from NICE saying the GL was written with consensus, and agreed before the resignations, but maybe I'm just thinking of the emails I've had from them. The minutes may give you some clue.

And in the end, even BACME backed the guidelines. BACME!

 

Quote from the Googel Translate version @SNT Gatchaman posted:

"From a health science perspective, it is worrying that the NICE Committee and former IOM are breaking with the principle that the medical basis is weighted heavier than ideology when it comes to recommendations for the investigation and treatment of diseases. To avoid ideological research, research into ME/CFS should involve independent researchers who are independent of the ME community [2, 5]."​

Quite a harsh language here. If I understood correctly they are saying that the NICE and IOM reports on ME/CFS were guided by ideology and that researchers linked to the ME community should no longer be heard?

 

When your research is so terrible that your only chance to succeed is to silence patients...

It does confirm that the BPS people are trying to oppress patients.

 

Yes, in the light of current European news events (won't go into that more in these forums) it really does bring home the non-trivial similarities of all this, to the ways of oppressive regimes. They cannot legitimately counter the criticisms, so gag and malign the critics instead, including accusing them of all the dirty tricks the regime engages in itself.

 

Presumably researchers who associate with patients cured by methods such as the Lightning Process would be considered “independent of the ME community.” It’s just those who entertain the delusions of militant patients who would be barred. The illogic of this is mystifying.