Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

From the article:

"Services are no longer able to provide a full range of evidence-based therapeutic interventions."

I haven't read all the postings so far, but I would say: What full range of therapeutic interventions are they talking about?

There are two interventions - CBT, and GET. That does not constitute a full range.

It's like anyone selling anything, presenting their products as a "full range", when there are only two.

 

'And another article in Pulse Today by Emma Wilkinson: Row reignites on NICE ME/CFS guidance as researchers question process '


One Comment so far in Pulse.

I wonder how many more doctors/GPs have put the 2021 NICE Guideline "straight in the bin". That attitude would explain a lot. Some of us will have been pushing up the daisies for half a century before UK doctors shift from their stubborn attachment to Ignorance Based Opinions (IBO).

 

I'd recommend people do sign up for Community Notes.
When writing notes on tweets always write in a neutral tone and provide high quality evidence links. Counter incorrect facts only, do not attack the person or anything that is an opinion, however outrageous - those notes will not end up getting added and your "influence/rank" will go down.

Notes are only made visible to general users after enough people have voted them as helpful. Crucially there needs to be a spread of positive votes from users who would normally be expected to disagree, for a note to get promoted. (The software behind the scenes works out who is likely to disagree with each other based on your previous voting patterns)

Also worth bearing in mind - if you do write a note, don't share it here saying "hey everyone go and upvote this" as that will start to show as a pattern of co-ordinated behaviour and make individuals votes less effective.

 

The commentary has now disappeared for me

 

I thought I would explain to this co-author the importance of the conflicts of interest.

 

This idealized version of medicine never existed. It was always what people hoped it would be, but in real life people mostly just do their job as it is required to keep it, never have the big picture or the time and resources to do everything.

It's a lot like the fictionalized version of the past that reactionaries love to depict, how life used to be so simple and good, when in reality what they are thinking of is simply the time when they were children and didn't know about all the bad things that have always happened.

Medicine has been around for millennia, mostly based on clinical experience, and it was only around the turn of the 20th century, with science, that it started doing more good than harm. All these ideologues have is beliefs based on their clinical experience, they have no science, and no science doesn't work in healthcare. The "first do no harm" slogan is just that, a slogan, a feel-good idealized version that doesn't work in real life because the capacity to help everyone still doesn't exist.

I genuinely think that AI will be completely transformative and be able to realize that idealized version of health care, because what's in shortest supply is time, there are simply not enough doctors and clinics and hospitals with the time they need to really solve problems. Most experts will work for months, years even, on projects, with huge oversight and process. Doctors sometimes have to make life-altering decisions in a few minutes, with barely any information, and entirely alone. This is simply not a recipe for success. All experts would fare just as poorly in those conditions.

It's technology that matters in the end, and although technology has started improving the back-end of medicine, it hasn't even begun to be used at the interface where patients are involved. Even after the pandemic we can't even get them to routinely do remote medicine, even though hundreds of millions would benefit from it.

 

IAPT, too. That's billions per year. This is now a huge industry, employing thousands. An endless stream of no-effort money without ever having to deliver anything. There's a lot at stake.

 

And it's not just NICE. The German IQWIG did the same, dismissed almost the entire evidence base as too biased to evaluate. And a Dutch one, too, I think? I saw someone mention that recently but don't remember it. I guess it's what lead to the funding that's being misused by Rosmalen?

IQWIG still mostly stuck to the original conclusions, but this is also in addition to the IOM/NAM report, it's adding up. Contrary to Chalder's lie in the Guardian article, their evidence base has been massively diminished since. It's just that reality hasn't factored in, the coyote remains suspend in mid-air until someone points down at the long fall below and gravity decides to do its thing.

 

If you have a twitter account, I would definitely advise to go and rate it as helpful. You can be certain that our snake oil peddling opponents will do the opposite.

 

Replying to Glasziou:

It isn't actually hard to reply when people make claims based on no evidence - as they did in this paper. You just stick to facts.

 

I agree Trish.

 

I would go further.. what services exist at all?
Even BACME said things were bleak in 2018.
Now it appears they are mostly crap!

 

We have none . In retrospect that has been a good thing.
The question is what would a new service be based upon when toys are bring catapulted out of prams.

 

Merged thread

ME/CFS: Researchers question credibility of NICE guidance
BMJ 2023; 382 doi: https://doi.org/10.1136/bmj.p1621 (Published 13 July 2023)
Cite this as: BMJ 2023;3821621

Elisabeth Mahase

Guidance from the National Institute for Health and Care Excellence (NICE) on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) “deviated from usual scientific standards” and could cause harm, a group of researchers have claimed.

More than 50 international specialists analysed NICE’s 2021 guidance and questioned the evidence underlying the decision to stop recommending graded exercise therapy (GET) and recommending only cognitive behavioural therapy (CBT) for symptom management and distress.1 “The consequences of this are that patients may be denied helpful treatments and therefore risk persistent ill health and disability,” they wrote in the Journal of Neurology, Neurosurgery and Psychiatry.

NICE has vehemently rejected the study’s conclusions, telling The BMJ that it stands by the recommendations outlined in the guidelines....

NICE has said that it will provide a “detailed response to this analysis” soon, but it was “confident that system partners and the ME/CFS community will continue to work together to make sure the important recommendations in our guideline are implemented.”

 

...It then reviewed the guidelines in 2021 and said that some people with ME/CFS reported “worsening of symptoms with GET and no benefit from CBT....

Some.

 

Good question. I suspect many have never treated anyone with CBT as they are probably not trained CBT therapists or psychologists who have trained in CBT.

I know one of the signatories to the paper was told in 2005 that GET was not on offer in the CFS therapy service that he referred into (he's an ID doctor). He never listened. The consultant psychologist repeated this to him and medical colleagues ad nauseum. He never listened. He retired. Still believing what he is not trained in, not prepared to believe what people who are trained were telling him. Obtuse.

PW for example is a psychiatrist - unlikely to be trained as a psychotherapist too. Therapy training has not been part of UK mainstream psychiatry training for decades. There are a few exceptions to this.

 

Hello there, do you (or anyone on here) have a link or reference to the German IQWIG and Dutch studies/reports? Thanks

 

There was a Finnish review as well but I can't remember if it also dismissed CBT/GET studies. I believe it agreed that PEM was a core symptom.