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

As usual I wasn't very clear. I meant they're unlikely to get the media to listen to their caterwauling again, but I'm also a bit more optimistic about reducing the potential for treatment harm (at least in the medium term).

Long Covid has increase understanding of concepts like pacing and PEM in ways the ME community could never have managed alone, at least among folk who're online. When it comes to risk awareness, someone who develops ME now might be in a more advantageous position than they would have been three years ago, because the publicity around long Covid means they're at less risk of swallowing the pacing-up manual whole without asking questions, and more likely to have people around them who're also a bit better informed.

That some of them might be protected by the efforts of other patients rather than doctors is scandalous, sure, but when it comes down to how much the rest of their life is limited by irreversible worsening, it's still a plus.

 

Still nothing on the SMC's website.

 

Maybe, but I would have thought that if they wanted to support the awareness of this opinion piece then they could have found a couple of people to speak in favour of it. Or perhaps there was no attempt made to get them interested in it, whatever the case it's unlikely that we will ever know for certain.

 

thats odd

makes me nervous

 

I know that SMC did send out a press release.

 

Thanks to whoever wrote it. Hopefully it will get posted on the journal website but it does contain some pointed comments/language that I doubt would make it into print in a published paper.

Regarding this:

Is it essentially the same as “activity management” in the 2007 guidelines? I don’t live in the UK so didn’t pay as much attention as some there might to the wording in the 2007 guidelines but my impression was that “activity management” was graded activity-lite for the more severely affected for which there was very little RCT evidence so in keeping with the spirit of the rest of the guidelines. There was some discussion on the forum that recommending energy management was like the recommendation of activity management in the 2007 but I read that as it was similar for NICE to recommend them as neither had lots of RCT evidence?

I’m not sure about that. I think a slightly similar wording was used in forum discussions but the point there was that if GET is used in the practice in a different way to that in trials, there is no trial evidence for how it is used in practice and thus it can’t be seen as evidence-based.

Anyway thanks to whoever wrote the submission.

 

“how can it be that some of these people have treated people with ME, but understand so little about the condition?”

Because it’s all about money, power and their own careers and the health of millions of patients is totally irrelevant.

 

Except for Crawley. Odd that she's not signed on.

 

Rosmalen isn't either.

 

I believe that sending out a press release given to them to their media contacts is their regular level of support, so I wouldn't be surprised if they had (they were interested in doing so for the launch of DecodeME). I was more referring to the lack of a 'roundup' or 'rapid reaction' which they do for what they deem to be "stories of most interest", which doesn't seem to have been the case here.

 

​

This makes me feel physically sick.

What happened to going into medicine to help people? Or learning by 'standing on the shoulders of giants?'

The hypocratic oath says "first, do no harm", right? I am thinking doctors should be forced to regularly re take their oath in the same way older folks might need to retake their driving licence to prove they are still safe to hold said licence.

 

Though it is still early days and despite their prior 20 years of champion the BPS approach to CFS, they do seem to have taken a more balanced view of the condition and don’t now just take their expert opinions from the same narrow group of vested interests. Since their round up of the launch of the current NICE guidelines in 2021 they have only featured research articles on ME/CFS and have largely focused on biomedical research.

Though the majority of their staff have been with them for a number of years and Fiona Fox is still their chief executive, who so far has made no public backtrack from liking people with ME to Nazis in her book ‘Beyond the Hype’, as far as I can see they no longer have any obvious BPS devotees on their Board or amongst their external Advisors. Is it possible we are seeing an editorial shift in their views on ME/CFS?

If this is the case, the usual suspects will be disappointed they are not immediately rushing to promote this opinion piece masquerading as serious research methodology analysis.

 

'ME Foggy Dog' (Sally Callow) has received a response from NHS England to her complaint to them about the appointment of Simon Wessely as a Director of NHS England. I'm sorry I can't do screenshots of the tweet. Perhaps someone else can.



ME Foggy Dog:

'Response from @NHSEngland to my complaint re. The appointment of SW to the Board earlier this year with
@StripyLightCIC

I'm guessing now would be the time to complain again citing the criticism of @NICEComms ?'




https://twitter.com/user/status/1679415961483354113

 

In this context would it be appropriate to raise with NHS England and the Health Minister that, in addition to concerns about Sir Simon Wessely’s appointment as a non-executive board member when he is co-authoring an attack on NICE, could they also confirm if he is or is not the senior health figure revealed by FOI requests as trying to pressure NICE into diverting from the established guidelines process and to tamper with the agreed final draft, falsifying the results of the evidence review, prior to the ultimate publication. Such behaviour would surely be incompatible with membership of the NHS Board.