HealthWatchUK: It is not only drugs and devices that can harm, 2021, Struthers

Split from Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

Hi all
Got a version of the post about poor research into behavioural and psychological treatments in the HealthWatchUK newsletter. It mentions PACE and the Cochrane review https://www.healthwatch-uk.org/publications/newsletter/newsletter-114/221-114-cbt-get.html.

 

Great article @Caroline Struthers

 

Excellent

 

Really good, Caroline. Thanks.

I loved this: ‘‘But was PACE effectively a “show trial”?’

Not heard that phrase before. Perfect analogy.

 

Yes really excellent, thank you so much

 

Thank you @Caroline Struthers . Great article

 

It wasn't even my idea to call it that. I think I had been a bit more statement-ey about it, and the newsletter editors were trying to "soften" my tone - LOL

 

It would have been a bit too obvious to call it the POTEMKIN trial but frankly it doesn't make much of a difference. Of course it 100% was a show trial. NICE had put into practice the very same treatment model the very same year PACE started, it would have embarrassed too many people had it failed. And so they cheated and the system failed because the promises were political.

Even the Scopes trial had more science to it and was less politicized.

 

Excellent @Caroline Struthers

 

Annoyingly I realise I (or maybe the editors??) removed a paragraph (in italics below) about the new NICE guidelines during editing process....but the reference is still there in the final piece - I might see if I can get the paragraph reinstated.

Thankfully, NICE updated draft guidelines for ME are now out for consultation [20]. The new draft has removed the recommendations for GET and CBT, having finally recognised the weaknesses of the evidence underpinning the previous recommendations, and acknowledged the strength of the evidence of harm [16, 17].

 

The consultation period has now ended (22 Dec) and the Committee are now finalising the Guideline, presumably in response to the comments.
I realise the process may well have been ongoing when you submitted the piece.

Date for release of GDL is 21 April.

 

Excellent article.

A very simple example for doubters, would be if people with early symptoms of cancer were referred not to a cancer clinic, but to a CBT clinic, and subsequently "re-educated" to believe their worries about their symptoms were groundless, and to ignore them; they would feel on top of the world for a little while. By the time it became clear this "therapy" was deeply flawed, significant harm would have been inflicted on the patient, given the loss of crucial early investigations and treatment.

Although the above is obviously extreme and (hopefully!) unlikely, it nonetheless illustrates how serious physical harms could result if a condition is presumed to only need psychological / behavioural interventions, based on very poor quality "evidence". It sets an easily understood precedent as a basis for further discussion.

It can sometimes be useful to present detractors with a simple irrefutable example, that they simply cannot deny without showing their own stupidity. Once they acknowledge the validity of that example it then becomes much harder for them refute other similar, but less obvious examples.

 

Yes. very true. I was given a deadline of end of November to finish the article, so was expecting it to be published before the end of the consultation.

 

My mother became very fatigued and anxious after a bout of flu and was reassured that it was PVS for 3 months until she collapsed and they discovered she had a small cell, very aggressive cancer. It would have made no difference to the outcome and was probably better for her, but fatigue is not always benign and I felt she should at least have had a blood test.

 

I have been sharing your article for the Healthwatch Newsletter - it has been incredibly useful, thank you @Caroline Struthers