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

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.

 

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".

 

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.

 

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

 

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.

 

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.”

 

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.

 

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

 

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.

 

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

 

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’-