David Tuller: Three CBT/GET Proponents Quit NICE ME/CFS Guidance Panel as Publication Date Nears

[Countrygirl]

https://www.virology.ws/2021/08/07/...Zv2a78McaerOF9x2P0ueg0krz_J_B7I75iPrELi4qGWU4

Trial By Error: Three CBT/GET Proponents Quit NICE ME/CFS Guidance Panel as Publication Date Nears

7 August 2021 by David Tuller 8 Comments

By David Tuller, DrPH

The new ME/CFS clinical guidance from the UK’s National Institute for Health and Care Excellence (NICE) is finished—and is to be publicly released on August 18th. In the meantime, this final version has been sent to registered stakeholders—even as three of the 21 members of the committee responsible for the guidance have stepped down without public explanation, per an “exclusive” report on BMJ’s news site. All three quitters represented the wing of the committee that promoted the purported benefits of cognitive behavior therapy (CBT) and graded exercise therapy (GET) as core treatments.

A fourth committee member, Dr Charles Shepherd, medical advisor to the ME Association, was recently dismissed over conflicts between the confidentiality of the NICE process and his professional responsibilities with the NGO. In a statement published by the ME Association, Dr Shepherd noted that concerns raised by NICE over the issue involved public comments he made only after the draft version was published last November. Nonetheless, he wrote, “NICE received a complaint from someone who is carefully monitoring our social media content…This resulted in a further discussion relating to my continuing conflicts of interest and I have now been ‘stood down’ from the NICE guideline committee.”

The BMJ article included some quite stupid points. The reporter suggested that, when the NICE draft was published last November, the presence of “significant changes” from the earlier guidance “raised questions about how the evidence could have shifted so substantially.” Apparently, she was unaware that a lot can change in research during a 14-year period and that it is not unusual for medical practice to undergo shifts based on new understandings during such a length of time.
Then she wrote this: “In 2007 NICE recommended interventions such as cognitive behavioural therapy and graded exercise therapy for people with mild or moderate ME/CFS, whereas the draft update cites a ‘lack of evidence for the effectiveness of these interventions.’ It is unclear, however, how the evidence became unsupportive.”
The last sentence is laughable.

The reporter also needs to widen her circle of sources. The article quoted a single person about this situation–Professor Paul Garner, the Liverpool infectious disease expert who has argued that he cured himself of Long COVID and ME/CFS with his manly positive thoughts. In his comments, Professor Garner fretted that the three NICE committee quitters were “some of the most respected service providers for ME/CFS.” That might be true. But perhaps Professor Garner doesn’t recognize that the reason to assess the body of research in developing clinical guidelines is to base recommendations on science and not on the biases that can characterize traditional approaches of even the “most respected” providers

 

[Rufous McKinney]

journalism is going downhill.

every third person is a "reporter"

A professional journalist wrote a major article for a magazine, about something I worked on for 20 years and was "in charge of it". So the very odd part was: this journalist did not bother to ever figure out I was who DID all this for 20 years. The article features other people promoting their own agendas. It was a stunning shock to see it.

Clearly the journalist was paid to write about a topic they know nothing about. So they didn't even bother to Google.

 

[SNT Gatchaman]

A professional journalist wrote a major article for a magazine, about something I worked on for 20 years and was "in charge of it". So the very odd part was: this journalist did not bother to ever figure out I was who DID all this for 20 years. The article features other people promoting their own agendas. It was a stunning shock to see it.

Nearly anytime I've read an article in daily newspapers about something I have direct knowledge about, there are substantial factual or interpretive errors. Over the years, you see similar comments from experts in other fields. I try to view all articles through this lens (esp. political reporting) so it's a great joy to read someone like George Monbiot, for example.

A not uncommon running joke in hospitals along the lines of reported vs reality:
"in hospital awaiting surgery" = ventilated in ICU, brain dead, awaiting the arrival of family members
"critical" = likely discharged to ward, if not actually home
Obviously patient privacy impacts on this, but if you can't know, say "unknown condition."

It's analogous to TV shows. It becomes very hard to enjoy a medical drama as a doctor, or a mid-air crisis as a pilot, due to the frequent stupid. I can only imagine the face-palming that goes on if you're a lawyer, military or police.

journalism is going downhill.

Agree. We need actual journalism (report facts, supported by evidence). Opinions on those facts need to be sought from the genuinely credentialed via actual editorship: both sides-ing climate science being an egregious example. Lose a functioning fourth estate and lose decent society, if not the world.

 

[Alvin2]

All three quitters represented the wing of the committee that promoted the purported benefits of cognitive behavior therapy (CBT) and graded exercise therapy (GET) as core treatments.

Don't let the door hit you on the way out.
Reality denial works in politics but in science it deserves the boot.
And when voters smarten up it will get the boot in politics as well.

 

[Rufous McKinney]

both sides-ing climate science being an egregious example.

huge problem...agree.

Journalist are trained to find the "other side of the story" ; the notion that there are two sides, or more than two sides- sometimes breaks down.

Everything is then expressed in polarized terms, and the differing sides get conflated with one another.

 

[katabasis]

Nearly anytime I've read an article in daily newspapers about something I have direct knowledge about, there are substantial factual or interpretive errors. Over the years, you see similar comments from experts in other fields. I try to view all articles through this lens (esp. political reporting) so it's a great joy to read someone like George Monbiot, for example.

I've seen this phenomenon referred to as 'Gell-Mann Amnesia', named for physicist Murray Gell-Mann.

Briefly stated, the Gell-Mann Amnesia effect works as follows. You open the newspaper to an article on some subject you know well. In Murray’s case, physics. In mine, show business. You read the article and see the journalist has absolutely no understanding of either the facts or the issues. Often, the article is so wrong it actually presents the story backward-reversing cause and effect. I call these the “wet streets cause rain” stories. Paper’s full of them. In any case, you read with exasperation or amusement the multiple errors in a story-and then turn the page to national or international affairs, and read with renewed interest as if the rest of the newspaper was somehow more accurate about far-off Palestine than it was about the story you just read. You turn the page, and forget what you know.

• Michael Crichton, Why Speculate (26 April 2002)

 

[Rufous McKinney]

named for physicist Murray Gell-Mann.

oh gosh, our most brilliant Physicist!

This is SO TRUE.

I worked for some big bureaucracy and sometimes reporters call. And you do your best to answer questions.

Then one day, they hire "Media Contacts" who are trained in journalism. Funny thing is, they can't answer the questions, but are now who answers them...

 

[SNT Gatchaman]

I've seen this phenomenon referred to as 'Gell-Mann Amnesia', named for physicist Murray Gell-Mann.

Wow, thank you. "Today I learned" as they say. Michael Crichton was a complex, interesting person. Had he lived, I wonder whether he would have subsequently better helped the public understanding of climate change.

I can certainly imagine him being being vocal about the society-damaging dangers of global pandemics.

 

[Abrin]

My, this is interesting.

Thanks for the share @Countrygirl !