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

[Kitty]

I wish I had your optimism. They may have no more to say in research journals about NICE, but they, and particularly Wessely, have so much power in the NHS, and BACME is still all over the place, they will go on with their 'rehabilitation' and 'individualised treatment' just as before.

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.

 

[Andy]

Notably, at least at time of me posting this, there was nothing about this on the Science Media Centre's site, https://www.sciencemediacentre.org/working-with-us/for-journalists/roundups-for-journalists/

Still nothing on the SMC's website.

 

[Trish]

Still nothing on the SMC's website.

Since all the usual suspects are authors on this article, perhaps the SMC couldn't find any 'experts' to write in support of it. They wouldn’t want to only be able to supply to the media criticisms of the article.

 

[Andy]

Since all the usual suspects are authors on this article, perhaps the SMC couldn't find any 'experts' to write in support of it. They wouldn’t want to only be able to supply to the media criticisms of the article.

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.

 

[JemPD]

Still nothing on the SMC's website.

thats odd

makes me nervous

 

[MBailey]

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.

I know that SMC did send out a press release.

 

[Dolphin]

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/

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:

The complaint that energy management isn’t evidenced is bizarre. Energy management isn’t offered as a therapy and it isn’t curative. It is essentially the same as the activity management of the last guideline – which many of the same authors were happy to accept when they contributed to that guideline. Energy management is essentially a continuation of those same principles of care but it is not offered or presented as a treatment.

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?

If the treatment was delivered in a different way in practice it would indicate that the GET as researched wasn’t effective in clinical settings.

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.

 

[Trish]

I know that SMC did send out a press release.

Have you seen it? Might be interesting to see what it said.

 

[Adrian]

t's about how the activity levels are measured. Lots of healthy people with sedentary jobs might only walk 4000 to 5000 steps a day.

On days I am working and go into the office I would generally do somewhere between 2500 and 3500 steps so I think your numbers are over optimistic. If I work at home then I would do less steps (unless I go for a walk).

 

[Hutan]

On days I am working and go into the office I would generally do somewhere between 2500 and 3500 steps so I think your numbers are over optimistic. If I work at home then I would do less steps (unless I go for a walk).

Indeed, the point is that step counts may not differ between healthy controls and people with ME/CFS at the milder end of the scale. What differs is what else can be done in the day, including sitting upright, talking with others, cognitive work, standing; and the capacity to increase physical activity levels without consequence. (And of course, the person with ME/CFS feels rubbish a lot of the time.)

If the healthy office worker decided they wanted to train for a marathon, they probably could. But the person with mild ME/CFS would start to train and end up with PEM. They would not get enough days where they were able to train that they could get much fitter (maybe unless they have very mild ME/CFS and they have a huge amount of help for everything else in their life to be done for them.)

I think the way to think of it is that the activity capacity has shrunk, and so people with ME/CFS are operating near the top of that activity capacity every day. For people with mild ME/CFS, their activity capacity might look like that of a middle-aged office worker (regardless of them perhaps being a 25 year old professional sportsman before they became ill).

 

[Mark Vink]

As has been said, how can it be that some of these people have treated people with ME, but understand so little about the condition?

It must take an exceptional ego and an exceptional lack of intellectual curiosity to miss so much, both in terms of the academic debate and the lived experience of a patient group that you have worked with over decades.

“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.

 

[dave30th]

Since all the usual suspects are authors on this article, perhaps the SMC couldn't find any 'experts' to write in support of it. They wouldn’t want to only be able to supply to the media criticisms of the article.

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

 

[Andy]

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

Rosmalen isn't either.

 

[Midnattsol]

Indeed, the point is that step counts may not differ between healthy controls and people with ME/CFS at the milder end of the scale. What differs is what else can be done in the day, including sitting upright, talking with others, cognitive work, standing; and the capacity to increase physical activity levels without consequence. (And of course, the person with ME/CFS feels rubbish a lot of the time.)

I checked my step count, and it has decreased by ~1000/day since I started working, from averaging ~4500 to ~3500. This is with me being in the office typically two-three days a week and working from home the rest. I've had to reduce other activities to make it work.

Though another change is that I now use a bike for going to work and going shopping, that reduces the number of steps from walking or taking the bus. We have also moved from one city to another, and the number of steps I walk inside the apartment is less because of the layout of the rooms. Energy wise (using calories as a proxy) the difference has been a reduction of ~50 calories a day from last year to this year, which is a bit when it gets summed up. It squares with me having had to spend more time resting, and that I've had a number of crashes the last year with moving/getting used to working vs being just a student/very chainging weather that triggers my OI a lot...

 

[Andy]

I know that SMC did send out a press release.

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.

 

[Trish]

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.

I guess White et al. thought they had the British media so much in their pockets they didn't need to ask the SMC to do a roundup of quotes from 'experts' And this article is not 'research' it's an attempt to pick a fight with NICE, probably partly so they can get another round of ME bashing in the media, to demonstrate their ongoing power, and partly so they have an article in a scientific journal that can be used as part of their campaign to get the NICE guideline reversed. I don't think they will ever give up on that until NICE capitulates, perhaps under different management. Wessely's power in various quarters might be able to influence that.

 

[JellyBabyKid]

​

I don't think they will ever give up on that until NICE capitulates, perhaps under different management. Wessely's power in various quarters might be able to influence that.

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.

 

[Peter T]

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.

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.

 

[Lou B Lou]

'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 ?'

 

[Peter T]

'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 ?'

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.