Health Sense article: Why deny patients with chronic fatigue syndrome treatments that can help?, 2022, by Peter White

[FMMM1]

I agree with Jonathan, i.e. this is such old ground it is hard to know what more to say.

I also recall Jonathans advice i.e. that medicine is now evidence based, rather than theory driven.

In the case of GET, & CBT, typically trials are unblinded and use subjective outcome criteria; these simply do not provide reliable evidence. Regarding the PACE study, as stated by Vink "There was no significant improvement on any of the [PACE] trial’s objective measures, such as numbers returned to work or levels of fitness." Therefore, the claimed success of CBT, & GET, based on the outcome of the PACE trial, is simply the selectively reporting of unreliable evidence i.e. responses to questionnaires, while ignoring the (limited) objective evidence.

If anyone seriously holds the view that these interventions work, then they should seek funding for a trial which uses objective outcome criteria such as actimetry (FitBit type devices), returning to work, education --- normal life.

I've quoted Brian Hughes comment, speaking to the Norwegian Association*, that science advances one retirement at a time (misquoting Max Planck) - [EDIT - White, the author of this article, has retired; therefore,] it seems that Planck's original quote is more accurate**.


*https://us02web.zoom.us/webinar/reg...EBEKxMo5u42qHuj91fbzOBYrj_souFFZPkv9F31w6jsUA
**“A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.”

 

[Sly Saint]

not sure if this has been posted
(Mod note - discussion on this topic elsewhere in the forum has been moved to this thread, and appears earlier - April 10)

from April 10th in the Guardian, letters

Long Covid: does rehab work?
Ravi Veriah Jacques is right to highlight the lack of treatments for long Covid syndromes, particularly for those with prominent fatigue, and the lack of research underlying this (“I have long Covid and despair that the government ignores its blight”, Comment). He may be right about the link with chronic fatigue syndrome (CFS). But we disagree when he rejects rehabilitation treatments, such as graded exercise therapy (GET) and cognitive behaviour therapy (CBT), which have been shown to help fatigue related to many illnesses, such as multiple sclerosis and CFS. It would be bizarre indeed if long Covid were to be the only illness that rehabilitation could not benefit. Their helpfulness does not imply that the illness is psychological.

As leaders of the Pace trial that he mentions, we also think he is misinformed regarding the Pace trial of these treatments for chronic fatigue syndrome, which showed that CBT and GET were moderately effective and safe treatments, so long as properly negotiated and delivered by trained therapists. Yes, Nice has recently advised that GET should not be offered and CBT only used to reduce distress, but four of the medical Royal Colleges did not endorse this advice as they considered Nice had made errors when reviewing the evidence.

Advertisement
CBT and GET may help some sufferers from long Covid but, unless we fund research to test them, we will never know for certain.
Prof Peter White, emeritus professor of Psychological Medicine at Queen Mary University of London; Prof Trudie Chalder, professor of Cognitive Behavioural Psychotherapy, King’s College London; Prof Michael Sharpe, professor of Psychological Medicine, University of Oxford

https://www.theguardian.com/theobse...-take-note-learning-is-about-more-than-recall

 

[JemPD]

It would be bizarre indeed if long Covid were to be the only illness that rehabilitation could not benefit. Their helpfulness does not imply that the illness is psychological.

They have used that line or something very similar but about ME/CFS in the past. They may have used strange rather than bizarre, but it definitely rings a bell.

 

[Mithriel]

It is a meaningless sound bite that looks profound at first sight then a second look tells you how stupid it is. There is nothing bizarre about it. Every disease is something that is different from the norm for the healthy population That could be the very definition of disease.

Children are tested within a few hours of birth for genetic diseases where something that is healthy for the population is deadly for them.

It just shows up the sort of intelligence shown by White, Sharpe and Chalder. Good for getting their own way, bad for medicine and science.

 

[Barry]

It would be bizarre indeed if long Covid were to be the only illness that rehabilitation could not benefit. Their helpfulness does not imply that the illness is psychological.

They have used that line or something very similar but about ME/CFS in the past. They may have used strange rather than bizarre, but it definitely rings a bell.

The really bizarre thing is how supposedly top-level scientists cannot see what an absurd and self-incriminating statement they are making. It is so woolly and open-ended, yet intending to support their efficacy and safety claims about very specific treatments. It's like they employ some sort of logic-scrambling device (I suspect in a sense they deliberately do!). Non sequitur or what? Talk about a comedy of errors.

 

[Trish]

Some posts have been moved to a new thread:
Guardian UK article, Doctors could soon face action over ‘misleading’ social media posts, April 2022

 

[bobbler]

This post and a couple of replies copied from the Paul Garner thread.



Will leave this here and go for my tea, as I'm in a horrendous mood and might say something I regret.

Agree about it being technically correct - if you he is talking about the original 2007 guidelines.

Goodness knows what he thinks he is adding anyway? other than more of the same tactics. I suspect that they've seen him in the bracket 'useful idiot' (as I suspect Chalder is), and am intrigued whether he randomly chose them or was handpicked and brought in - and at which point and what did he have.

It also seems strange that he got so much press by the start of May 2020 for being ill for 7weeks which seems to stem from a BMJ blog he'd already been given at a point where it was written and published/commissioned by that point.

Couldn't resist looking back through his twitter account to see who he is as it seems strange for someone with a career in infectious diseases to turn himself into a twitter lobbyist for biopsychosocial one day in 2020.

Got back as far as 2013, as even compared to expected his twitter activity is very thin before 2016 then seems to accelerate from there. Lots of politics until the covid stuff. Obvious spots are that he and Ben Goldacre have been retweeting each other for a long time, and we don't need twitter to note he is linked with Cochrane and Deborah Cohen (newsnight).

A retweet of the following in July 2018:

and a retweet of the Sense about Science evidence week on 25th June 2018

 

[bobbler]

Agree about it being technically correct - if you he is talking about the original 2007 guidelines.

Goodness knows what he thinks he is adding anyway? other than more of the same tactics. I suspect that they've seen him in the bracket 'useful idiot' (as I suspect Chalder is), and am intrigued whether he randomly chose them or was handpicked and brought in - and at which point and what did he have.

Looked this one up as an explanation for 'useful idiot': https://unherd.com/2018/06/six-types-useful-idiot/

Maybe I'm just niche in finding this interesting. It lists 6 types as being: the seeker, the utopian, the power worshipper, the relatavist, the stability-fetishist and the nostalgist. My gut-feeling is looking at the 'stability-fetishist' having noted the 'politics-heavy' feed and friendship circle. With a bit of 'seeker' thrown in if he actually did have something (then had to explain it as being for a higher purpose). But that still misses if he has actually changed his job where/how that would fit in? I'm intrigued to keep watching ..