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

[Sean]

There is an important omission here which is that exercise makes these abnormalities appear or worses their severity. Since there have now been many papers describing this phenomenon, it should be uncontroversial. And it's very relevant in any discussion about GET.

But it's not mentioned because this would show that the decision in new NICE guidelines to stop recommending GET is sensible.

Yes because of the misleading CBT/GET studies and the weird illness models that claim the illness is perpetuated by thoughts and behaviour. After the IOM report, the CBT/GET people seem to have toned down this rethoric. They should take some responsibility and admit this has contributed to disbelief and ridicule.

This.

 

[Sid]

FND is just the name neurologists give to ME/CFS (and other unexplained symptoms). So it’s not surprising at all that FND people are involved in this.

 

[Hoopoe]

But are the FND people not also proudly saying that FND is rule-in diagnosis, based among other things, on the presence of Hoover's sign? I doubt that many ME/CFS patients have "functional weakness".

 

[Sean]

FND means whatever they want it to mean.

 

[Trish]

From the ME Association fb page

"Following on from publication of the paper this week which opposes the recommendations in the new NICE guideline re downgrading CBT and removing GET >>

If anyone is interested in looking at the way in which the "abnormal illness beliefs and behaviour" model of causation and management of ME/CFS, and the use of CBT and GET, has been debated over the years this is good short review from back in 2017 - when the first (2007) NICE guideline was still in force

Dr Charles Shepherd
Hon Medical Adviser, MEA"

Link to the article:https://core.ac.uk/download/pdf/966...H-qDv1gxmReLNg0_1-xBR3cTu5wOw3ASfQfQ_RCxLzlLE

edit: link changed to one that should work

Looks interesting. We don't appear to have a thread on it so I'll start one.

Contesting the psychiatric framing of ME/CFS, 2017, Spandler and Allen

 

[Binkie4]

The top leading article on The Times leader page yesterday ( Monday 17th July) was a follow up to Sean O'Neill's double page spread on inquest delay from Saturday.

There is no mention of Maeve or any specific case, the focus being on the backlog of inquests, heading Aquainted with Grief.

 

[Sid]

In practice FND is anything they can’t diagnose as real D.

 

[Tom Kindlon]

Thanks to the World ME Alliance for coordinating a joint response which has been submitted now.

 

[Fainbrog]

Thanks to the World ME Alliance for coordinating a joint response which has been submitted now.

I quite like this approach, AfME have shared too. Basically 'the world' (ok, I know I'm extrapolating) vs a bunch of snarky, disgruntled doctors who refuse to accept that the science has gone against them and their perceived wisdom.

Obviously, the proof will be in the pudding when it's (hopefully) published. Now we also need NICE to also respond, in detail, as they suggested they would.

 

[rvallee]

Thanks to the World ME Alliance for coordinating a joint response which has been submitted now.

Where can we find this response? On their twitter account they only have a graphic saying so and no link to it.

 

[Tom Kindlon]

Where can we find this response? On their twitter account they only have a graphic saying so and no link to it.

As the second tweet says:
“If accepted, our response will be published within 14 days, at which point we will share it publicly.”

 

[dave30th]

I get the impression in my country if you have ME/CFS and go to a neurologist particularly if you don't already have a diagnosis, there is a good chance you will be diagnosed these days with functional neurological disorder. So they would have some contact with patients.

This is exactly why I have focused a lot of time recently on trying to smack down some of the bogus claims being made by the FND folks about prevalence, the purported specificity of the "rule-in" signs, etc. They have spent 10 years inflating the prevalence from their key study from Jon Stone, Alan Carson and Prof Sharpe--from 5.5% to 16%--and have spread the lie that the study showed it was the second-most-common diagnosis at outpatient neurology clinics. They know this is not what it found. So far only one journal has agreed to correct this false statement. Many more--several dozen--to go.

 

[Mithriel]

In practice FND is anything they can’t diagnose as real D.

They have moved beyond that, Sid. Now they claim that any proven and accepted physical disease can have a "functional overlay"

 

[Adrian]

It's odd that so many people specializing in an unrelated condition (FND) would care so much about guidelines for ME/CFS.

It would be interesting to look at trials for FND and see if they use the same dodgy methods. This could be seen as a group of doctors seeing challenges to an approach they have but from a different group of patients. They know their work and treatments are similarly dodgy so they defend the dodgy ME treatments.

 

[Adrian]

In practice FND is anything they can’t diagnose as real D.

I was going to say you are understating it but it all depends on what you mean by can't. I worry that its an easy diagnosis to make and they diagnose people who have other things (such as early stage cancer) as some doctors find it easier to blame patients rather than do a proper diagnosis.

 

[Trish]

A post making comparisons with Covid minimisers pushing herd immunity has been moved to
The biology of coronavirus COVID-19 - including research and treatments

Posts have been moved to a new thread:
Advice for freelancers on pitching articles to newspapers, by Frances Ryan, Guardian journalist

 

[Dolphin]

I saw a list of criteria that require postexertional malaise.
Another one is Rowe et al 2017 drawn up by an international panel of experts:

Another one is
Jason, L.A.; Jordan, K.; Miike, T.; Bell, D.S.; Lapp, C.; Torres-Harding, S.; Rowe, K.; Gurwitt, A.; de Meirleir, K.; van Hoof, E.L.S. A Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. J. Chronic Fatigue Syndr. 2006, 13, 1–44.

 

[Joan Crawford]

It would be interesting to look at trials for FND and see if they use the same dodgy methods. This could be seen as a group of doctors seeing challenges to an approach they have but from a different group of patients. They know their work and treatments are similarly dodgy so they defend the dodgy ME treatments.

I think they do use same low quality methods.

Also, I suspect retrospective recall for impact of adverse life events.

I reviewed that re FMS and found the method used impacted on whether a relationship existed. Prospective studies do not find a link between FMS and adverse life events.

I can post a link if any interest. Got to go now

 

[Tom Kindlon]

MEAction UK's submitted response to the Journal of Neurology, Neurosurgery & Psychiatry.

https://www.meaction.net/2023/07/12...apid-response-to-the-jnnp-in-support-of-nice/

Well done to @MEActNetUK trustees, Denise Spreag, Janet Sylvester & Malcolm Bailey, your e-letter, “The ME community support NICE and reject the misguided attack in ‘Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis’”, has now been posted on the journal website
https://jnnp.bmj.com/content/early/2023/07/09/jnnp-2022-330463.responses#the-me-community-support-nice-and-reject-the-misguided-attack-in-‘anomalies-in-the-review-process-and-interpretation-of-the-evidence-in-the-nice-guideline-for-chronic-fatigue-syndrome-and-myalgic-encephalomyelitis’-

 

[Sean]

Excellent letter. Thank you to the authors.

One small detail, the text of the letter appears to have been doubled on the journal's site. i.e. AA. So you only have to read halfway before it repeats.