NICE ME/CFS guideline - Stakeholder submissions to the draft and NICE responses - published 29th October 2021 - discussion thread

I suspect quite a lot of them see the purpose of medical research as being to keep them employed for as long as possible and remunerated as handsomely as possible.

The people doing the proper science are probably on less secure contracts, lower pay, and put in a lot more unpaid overtime because they're actually committed to it.

 

Thing is they already are evaluated differently, with the lowest possible standards. This is evidenced by the fact that many of them do point out the very same flaws on research they do not favor, the very same they dismiss when they do. And they explicitly want to lower it further because even with inadequate standards it doesn't show any positive evidence outside of manipulating outcomes or misrepresenting them.

It's already clearly a different standard and very explicitly so. But it's not low enough, it has to be so low that literally anything could pass. But of course this lowered evaluation would be very selective, it would not be as generous to identical trials of, say, homeopathy, showing the same "evidence" of benefits, all other things being equal.

They not only want the lowest possible standards, they want to apply them as selectively as they need them to be for their evidence to seem credible. It's a direct challenge on the very idea of scientific research, it's horrifying to see that there is widespread support for basically going back to before the scientific method.

 

There is a very strong aristocratic "did you touch me? You put your hand on one of a superior class?!" vibe to it. They speak of us as abstract things, not as people.

 

Is there a link to the grading done by NiCE of the CBT/GET studies? Which study got graded Low and Very Low. Has that grading been published?

 

mic drop

brilliant thank you.

 

everything appears to be going 'psycho...' psychoneurology, psychoneuroimmunology......

 

They rate outcomes (e.g. fatigue) for each comparison (e.g. CBT versus treatment as usual) rather than individual studies.

It's in the evidence review part [G] Evidence reviews for the non-pharmacological management of ME/CFS. It's all a bit confusing though because there were so many outcomes and comparisons.

 

Neuro-first-Psychiatry-2nd.
Functional-1-Neurological-2-Disorder-3. I concur.

 

Momentarily, this Brian Hughes blog post made me forget all the suffering of the ME community and the adversity it faced, managing to get some laughter out of me. It exposes human stupidity in all its splendor! Where is the seriousness of these Colleges of doctors normally required by the importance of their profession? (If this were the arguments made by the College of Physicians of my Province (CA), I would feel unspeakable shame and it would be quickly attacked by criticism.) Yes, their membership in the BPS made them lose their very soul.

Thank you Brian Hughes.

 

Yes!

It's a shame that "Cracks in the Ivory Tower" and "Crumbling Ivory Towers" have been used, as I feel that definitely needs to be somehow worked into the title of @Jonathan Edwards book.

Perhaps something along the lines of "As Their Ivory Tower Crumbled Around Them... A History of the Institutionalised Medical Neglect of..." etc? I'm sure others could come up with much better suggestions (not that he needs them).

[Mods please move to another thread if required]

 

I’ve not got to the end of this thread yet, so apologies if this is a repeat, but I just wanted to highlight this quote from Michiel’s post:

North Bristol NHS Trust - CFS/ME Service:
“Prof Edwards states that ‘unblinded trials with subjective outcomes are specifically considered unreliable.’ If NICE as an organisation were to generalise this opinion across all guidelines for example those for back pain, osteoarthritis and multiple sclerosis, what would the impact of this opinion be on these other guidelines?”

By Jove, I think they get it! Not a valid reason to reject Jo’s argument, of course, but at least they appear to understand the wider implications. I hope NICE has taken note.

[Edit: Pleased to see that it is a repeat and Jo has already taken note: https://www.s4me.info/threads/nice-...21-discussion-thread.23066/page-4#post-386970 Still worth repeating though.]

 

NICE failed to appreciate the scientific evidence.

Have you seen this review of the Lightning Process by Phil Parker?


There are no harms from GET. Everyone gets tired after exercise.

Ok, there are harms but from an inappropriate delivery of GET. If properly supervised then all is safe.

Nobody does GET anymore.

What do you mean by GET, could you give a definition?

We did something different all along.


In our clinic we have seen how GET cures patients from ME/CFS.

The evidence for GET is moderate with modest effect sizes. It doesn’t cure but clearly helps some patients.

Ok, the evidence for GET is of very low quality but we should still recommend it. Low quality is ok.


The committee came to the wrong conclusion because it used the GRADE approach.

The committee must have used GRADE inappropriately. GRADE is good.

NICE inappropriately downgraded the evidence from randomized trials

Ok, the evidence from randomized trials is really bad but that’s because rehabilitation interventions are too “complex”. We need more pragmatic trials, those will give better results.



What is clearly needed is an independent review of the evidence

Jonathan Edward’s testimony must be dismissed! His academic standing is based on laboratory research and pharmaceutical interventions. We need someone who values rehabilitation and complex interventions.


Trials used subjective outcomes because we listen to patients and want to know what they find important.

Why are there 5 patients on the committee? This is so biased.

Patient groups are all doom and gloom, all very angry’ people.

There is no evidence of harm.


The committee is biased, campaigners with an agenda

The guideline will lead to decommissioning of existing specialist services!

This guideline goes against established rehabilitation practices! Have you considered the impact on other guidelines?

You know there is a way…



NICE has not considered our comprehensive comments to the draft guideline

You should use CFS/ME. ME/CFS is wrong. CFS/ME Is better.

This NICE guideline must be wrong because the previous NICE guideline recommended something else.

Jonathan Edwards is a recognised advocate against trials and evidence

You know, there are also people who report positive experiences with the Lightning Process.


This guideline will maintain disability, increase the duration of illness and reduce hope of recovery.

We will not support this guideline and we have good reasons not to.

Oh if you put it like that. Hmm yes, ok, we can work with that. Great to have this talk.

Medical leaders sign statement in response to NICE guideline….

I’m proud that medical leaders have stood up for patients with ME/CFS and for continued access to the evidenced treatments that can help them in the face of destructive individuals and groups who wish otherwise.

 

@Michiel Tack

We had positive responses from patient groups.

It's important to listen to those who have recovered.

 

I'm a bit confused by this post. Is this a collection of direct quotes from all of the submissions, or are you paraphrasing parts of various submissions, or something else?

 

It's a sarcastic re-enactment of the critiques and comments on the NICE guideline.

Sorry if this wasn't clear. It's satire, so shouldn't be viewed as direct quotes.

I wanted to make an overview of all that has been said and done and this seems to be the only way I could do it.

 

It might already be pointed out in following comments, but it goes further than that. They need education on what constitutes as proper science or get out of the branche entirely. Or they already know what and what doesn't constitute proper science and don't care and then they still need to get out.

The level we imo need to be tackling this at is not at the level of misunderstanding ME/CFS which they willfully or otherwise don't do, but a misunderstanding of science. The stuff they do has wider implications than just us. If we were able to get it through to people that their practices are unscientific as @Jonathan Edwards has been doing, then this should help out us, but have implications far beyond ME patients too. This sort of practice needs rooting out root and stem once and for all.

 

I can see why they are all so keen to keep the treatments they have staked their reputations on to carry on being called experts so they still have status and employment. I expected they would fight for that.

What is baffling me is the number of submissions defending LP. Why should they lay their reputations on the line for an obscure, proprietary pseudoscience? Surely not altruism as it is not something they are known for, so what are they getting out of it?

 

EC is planning another trial on LP......might have something to do with it (particularly given her recent involvement in the CloCK trial , kids with LC).
and this recent research paper
"Results
While overlaps with SMC approaches were identified, and CBT-F in particular, distinct elements of LP were its focus on language style, neurophysiological rationale, affective/physiological change technique and mode of delivery.

Conclusion
This theoretical comparison identified distinct elements of LP which could be explored in future interventions or research aiming to improve clinical outcomes for children with CFS/ME, and informs clinicians about treatment options available for families."

https://www.s4me.info/threads/cbt-r...for-paediatric-cfs-2021-anderson-et-al.21335/