NICE ME/CFS guideline - submissions to the draft guideline consultation, December 2020

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NICE ME/CFS guideline - draft published for consultation - 10th November 2020

Physios for ME View on NICE Guidelines

https://www.physiosforme.com/post/physios-for-me-view-on-nice-guidelines

 

Very well done @PhysiosforME .

 

It’s interesting (and I’m really glad) that @PhysiosforME had very similar conclusions about physical activity and increasing physical activity, that most (all?) of us did too.

 

[my bold]

I think this is one of the most important parts of your excellent submission @PhysiosforME. I and others have been discussing much the same in these threads recently. I think the fact that such over-referencing of CBT in a single guideline is discriminatory is a crucial point to expose. If no other guideline does the same, then left as it is, there would need to be a very rational and public justification to keep it in - rationality being an attribute the BPS camp seem very short on. There is no rational justification of course, especially as the rest of the draft guideline provides a strong rationale for not doing so.

As I see it, leaving CBT in, even under the thin guise of being supportive, would be politically and financially motivated - nothing to do with health care evidence. Allowing the bean counters to still justify reuse of the same CBT-driven clinics, merely paying lip-service to any modest and inadequate retraining needs. Whereas in reality the whole shebang needs completely overhauling. CBT clinics would still have a part to play, but no more than for any other illness - not as a primary source of care, but simply referred to such a clinic in the minority of cases who need it.

I believe that leaving CBT in the new guideline, in this way, would be the thin end of a very thick wedge for ME/CFS patients, for many years to come. It's not that we are saying it should never apply to pwME, just that it should have no more prominence than for any other illness group. Now is our one chance to sort this, once and for all.

I very much hope @Science For ME's own submission reinforces this same point, especially the very strong discriminatory aspect of it. I know I and others have raised this issue a number of times in these discussions.

 

Why am I always being misunderstood? I must have a funny way of saying things.

This is what I said:

"As I see it, leaving CBT in, even under the thin guise of being supportive, would be politically and financially motivated - nothing to do with health care evidence."

"CBT clinics would still have a part to play, but no more than for any other illness".

What I intended to mean is that there is no justification for talking about CBT for pwME any more than for any other illness. And given the other illness guidelines make no mention of CBT, then why make mention of it in the new ME/CFS guideline.

Me saying CBT has a part to play is not synonymous with me saying it should be in the guideline, far far from it - everything I'm saying is that it should not be in the guideline. I'm simply saying it should be the same as for any other illness, no more no less. i.e. Referral if deemed appropriate, the same as for any other illness.

Sorry for being unclear.

ETA: Just in case this was the confusion, when I say "CBT clinics" I do not mean ME/CFS-specific CBT clinics, I just mean CBT clinics - the generic sort.

 

The ME Association on their submission.

Code:

https://www.facebook.com/meassociation/posts/3629304463793852

 

MEAction submission, https://www.meaction.net/2020/12/21/meaction-uk-response-to-draft-me-cfs-guideline-from-nice/

 

https://www.actionforme.org.uk/news/our-response-to-draft-nice-guideline/

 

WAMES response to draft NICE ME/CFS guideline
https://wames.org.uk/cms-english/wames-response-to-draft-nice-me-cfs-guideline/

 

Submission from Dr Hng et al

Code:

https://www.facebook.com/DrHng/posts/1120662501687642

Code:

https://drive.google.com/file/d/1dfgfkZLBgWwwYWk2nxtaOqCSMnSHviXW/view

 

From a quick skim: the advice on helping patients to manage their day-to-day lives with ME is generally very helpful indeed. The request for the inclusion of a reference to gradual as well as specific-onset ME is one I hope the committee will take up. The recognition that audits of existing clinics and urgent alterations to medical education are required is probably beyond NICE's scope but very welcome to see in a submission nonetheless. I'm personally gratified to see how many submissions emphasise the unique difficulties of patients with more severe ME.

One criticism that I would make of this submission is that some of the suggestions for testing and pharmacological management are unsupported by the available evidence. The overwhelming majority of new ME cases do not require screening for polioviruses or the enteroviral envelope proteins. The cyclovir antivirals are widely used in chickenpox and shingles, but the evidence quality for their use in EBV is poor (and beyond the scope of an ME guideline). The evidence for the use of antivirals in ME is entirely absent. The recommendations for pharmacological management on the basis of "sufficient experience, if not research evidence" is an own goal; the psychosomaticians claim that there is "sufficient experience" from their own clinics for CBT and GET.

I also think that pushing for the inclusion of POTS, which several submissions have attempted, is a mistake: there is no evidence that the magnitude of increase in HR on head-up tilt correlates with overall symptomatic severity or even the degree of orthostatic intolerance experienced by an ME patient; the use of fludrocortisone, pyridostigmine and midodrine in POTS are unsupported by well-powered dbRCTs; and, furthermore, one of the primary treatments for POTS is aerobic exercise.

 

I agree. I am afraid that there are too many unsubstantiated suggestions in this submission - which means it can be dismissed by the committee in its entirely. The S4ME submission is much more balanced and likely to be take seriously, at least by those members of the committee with open minds.

 

https://25megroup.org/nice-guidelines

https://25megroup.org/nice-guidelin...NA9sB3oF6qTM-Lli87JEXU7rngOD8m18asMokUaLl0WXs