NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

I'm not a fan of the AfME statement.

[edit: Maybe I was too hard on that statement because AfME have been so bad at asking tough questions to authority figures in the past? I might come back and re-read this later].

edit 3: There are some things about this response that are sign of a positive step forward from AfME ("given issues with the PACE trial and the unhelpful responses from scientists involved") it's just that they're so many steps behind where they should be that I can overlook them when it probably is worth being grateful for crumbs.

“As we made clear in our response to the NICE guideline scope consultation, Action for M.E. would not accept recommendations of any approach based on the deconditioning hypothesis, the notion of false illness beliefs, or in which patients’ legitimate concerns about the consequences of exercise are dismissed or ignored [this emphasis on the underlying model misses the key point - that the evidence claiming to show CBT/GT are effective treatments is worthless junk-science. They can easily change the emphasis of their model to 'central sensitisation' of something, but that doesn't make it any better].

“So far, the Chair and/or Vice Chair have recruited ten professional committee members, and five lay members (ie. people with lived experience of M.E.). Clearly there is some anger about the majority of the professional appointments, and a lack of trust (which is entirely unsurprising given the lack of progress in the field) [it's not the lack of progress that has caused distrust, it's the fact that so many professionals have shown themselves to be untrustworthy, misleading patients about their level of expertise and ability to treat ME/CFS] in the process, and specifically in some of these individuals.

“While entirely understandable, given issues with the PACE trial and the unhelpful responses from scientists involved in, I do not think it is realistic to accurately judge anyone’s commitment to upholding the Nolan principles (to which all committee members are required to adhere) based solely on selected information found online, anecdotal accounts, and their apparent working relationships with other professionals. [How should we judge whether a professional is fit to serve on this committee? If they have a history of misleading patients, why should they now be given a position with so much power over us? It's impossible to ever be certain about how people will behave in the future, but we can still make judgement about who would be best suited to be given huge power in determining how people with ME/CFS are treated.]

“Instead, I think it would be helpful to understand more about the current views and recent experiences of every committee appointment, and their relationship with people living with M.E. My team and I will be contacting them to ask if they would be willing to share this with us – and you, via our website and social media channels.” [Will this involve asking questions that fail to address any of the key points? I really worry that this is going to be AfME producing propaganda, perhaps accidentally, for promoting those who are going to screw us over. If AfME really want to do something like this in a useful way I hope that they will be reaching out to some people who have a good understanding of these issues and, for example, recognised the problems with PACE when it was published].

“I also want to make it very clear to the five lay members of the Committee – Saran Bonser, Sally Burch, Nicola Kidby, Adam Lowe and Dorinda Jack – that we believe your voices, and your experience, to be a crucial and powerful part of this review. Having attended the two NICE workshops on the guideline so far, and having been in touch with the technical team to share feedback from people with M.E. about the recruitment process, I believe the committee’s Chair and Vice Chair are sincere in their determination to produce a guideline that is fit for purpose, and patient-led.” [The chair and vice-chair played an important role in the appointment of this committee - I think that they should be judged by their actions, not their words].

edit 2: I later posted:

 

AFME in fantasy land again, sums it up exactly JemPD!

 

https://twitter.com/user/status/1057261723886014464

 

Thanks @Esther12. Have to say that I find the Nolan Principles quoted by AfME interesting! Seems to me that the majority of the committee don't adhere to them.

 

I think that whether I was too harsh or not really depends on exactly how AfME seek to gather further information. From their history, I think it's reasonable to have low expectations, and to think that any responses that they get will be no more valuable than vague anecdotes from anonymous internet accounts. At the same time, there is reason to think critically about all the information available to us, and there's always a chance that AfME will conduct a really rigorous questioning of committee members that pushes them to clarify their views on the important moral problems that surround the way ME/CFS patients are treated, and the misleading claims that have been made by the PACE researchers and others.

When I was first getting interested in ME/CFS research I always tried to give people the benefit of the doubt. Failure to do so often leaves people looking unreasonable and 'extreme'. Over the years I've also seen how authority figures use this 'benefit of the doubt' to get away with things that really harm patients. Given the prejudice and quackery that surrounds ME/CFS in the UK, just hoping that things will turn out okay seems to consistently turn out terribly.

 

1. Selflessness
Holders of public office should act solely in terms of the public interest.

That rules out 99% of human beings then. Can anyone look at UK society and think that these are really the principles which guide public figures?

 

What's the problem? They are members of the public. They act in their own interest. Therefor they act in the public interest.

 

https://twitter.com/user/status/1057304335560986624

 

Quote by @Tom Kindlon in the previous post :

I've just read most of Chapter 10. It was creepy, dismissive, patronising, and very, very disturbing. The idea that GPs can diagnose things like endometriosis, ovarian cysts, and adenomyosis just by having a feel is bizarre and quite simply wrong.

This made me furious :

What descriptions of pain does the author consider to be acceptable, I wonder? The same descriptions that doctors employ? When does any non-medical patient, male or female, ever get trained on how doctors describe pain? How does the non-doctor explain the difference between a pain that, say, makes it hard to walk upright, and a minor ache or pain?

 

I’m assuming those Principles applied to the previous committee?

The Chris burton book is baloney, he includes CFS as an MUS and then Alison Wearden does the fatigue / CFS section where the only post exertional effects she recognises are natural sore muscles, the model is the deconditioning one, graded activity treatment, she claims they can explain the fatigue (wow) and also says fatigue is something everyone gets and can relate to which completely misses the point people with ME, MS or cancer fatigue all say which is it’s nothing like normal fatigue, it’s pathological exhaustion like your cells are dying or wading through mud, not a normal experience

Then we are supposed to pit our trust in these people

 

Yes. I’ve been ‘corrected’ many times when trying to describe my symptoms and not using the right medical terminology. Not teaching doctors to communicate with patients is a big fail in medical education everywhere, it seems.

 

Sharpe also blundered into that a few times. They variably say both propositions, that it merely and only marginally helps some but also that it is a universal cure for the patients who truly want to get better. It's a direct contradiction but no one holds them accountable for it.

Normally this would never pass. Problem is few professionals see any need to apply scrutiny, something that was made clear when it was shown they used overlapping entry and recovery criteria and everyone involved, including medical journals, insisted this was all fine and dandy even though in normal circumstances it would be an automatic rejection.

Those are all issues that will amount to a massive scandal once the suspension of disbelief is lifted. Meanwhile they can pretty much say anything without evidence and it makes little difference. They can even baselessly accuse us of unspecified wrongdoing and it just gets published uncritically and taken at face value. The substance of what they say isn't important now, but with hindsight it will be a huge record of massive, even malicious, incompetence and fraud.

 

on the other hand, I have found that they generally don't seem to know what orthostatic intolerance is

 

Quite right. And they will berate you for actually knowing the right terminology too, because that means you have been diagnosing yourself online and probably a hypochondriac.

 

I don't have the energy to read this properly at all.

But I have just skimmed through it a bit, and every bit I have randomly come across is incredibly disturbing, and when I write incredibly disturbing I do not use hyperbole. Everything reads as if it's written as a parody of the worst parts of psychology. It reads as if someone is applying reductio ad absurdum to show just how insane this train of thought is.

 

i tried to find out who the "others" were by asking directly and then going through the foi process to get all of the minutes from their meetings. Names were redacated in the minutes and i dont think it was clearly documented what was discussed re this. Which i was really surprised about seeing as they had made this statement on their website.

 

I question in the meanwhile how many doctors actually know what burning muscles feel like. I came across a healthy person who never used her muscles until they burned, obviously, because she asked what it feels like. I assume that's not uncommon. So how are they supposed to understand when you say your muscles burn instantly? It's no suprise, I begin to think, that so many people misunderstand ME. Burning muscles is so simple, compared to PEM.

 

from chater 10 Pelvic symptoms
"Abdominal palpation and internal pelvic examination should be performed – failure to perform an examination may be interpreted as evidence that you are not taking the symptoms seriously."
How patronising! How dare you imply that the reason a patient complaining of pain should be examined... You dont examine to humour them, to pat them on the head & reassure them "i believe you but there's nothing wrong dear"...
But rather - you incompetent fools - a basic exam should be performed because not doing so is DOWNRIGHT NEGLIGENT!!

A very dear friend of mine was a victim of this attitude back in the late 90s... kept going to GP in cyclical pelvic agony... "nothing wrong with you, go back on the pill".... she had at least 5 appointments over 10mnths... but the GP never even bothered to examine her. When it got so bad she narrowly missed having a road accident caused by the pain, she demanded a 2nd opinion.
Turns out she had a grapefruit sized growth on her ovary, they were very concerned that it was cancer, but it turned out to be benign, but it could easily have gone the other way & as it was she lost her ovary.

With people like that on the committee God help us.

 

Bl**dy hell that book sounds like an absolute nightmare of a read.

Just wanted to check something - I make it to be three committee members (out of 12 so far) who are actively delivering CBT/GET:
Joanne Bond-Kendall, Jo Daniels and presumably Susan Watson.

As opposed to the other BPSers who are prescribing and/or promoting CBT/GET but not the ones actually delivering the therapies.

Is there anyone I've missed?

 

Below is a link to a video of the Backbench Business Committee today. At
14:42 you can see Carol Monaghan et al asking for a debate about ME in
House of Commons. She mentions the problem of the NICE GDG members being
supporters of PACE.

https://parliamentlive.tv/event/index/0666480c-4fb5-443f-87bc-e295dabc0e58

All the best......