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

Andy

Andy

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

Physios for ME View on NICE Guidelines
The National Institute for Health and Care Excellence (NICE) have produced a long-awaited revision of their guidance: “Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management”.

This guidance document was made public in November with the invitation to review and comment before 22 December 2020. The final publication date is estimated to be April 2021.

Physios for ME have spent a long time reviewing and discussing these guidelines and we have now submitted our response to NICE. Our comments are primarily focussed on our key area of interest in relation to ME; physiotherapy management. We therefore made the decision not to invite the wider ME community to contribute to our own response, but we were aware of several major ME charities providing opportunities for people with ME to contribute to this process, which we wholly supported.

Our views and recommendations are based on the current available evidence base, as well as the valuable insight we have gained from engaging with people with ME, and we’d like to once again extend our thanks to everyone who has worked with us and shared their story since we formed in June 2019.
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https://www.physiosforme.com/post/physios-for-me-view-on-nice-guidelines
 
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We agree with the comments made by Forward ME regarding this:

Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management Consultation on draft guideline – deadline for comments 5pm on 22/12/20 email: cfs@nice.org.uk Please return to: cfs@nice.org.uk In the evidence review at G Page 342 Line 26, the committee summarised the evidence on non-pharmacological interventions for ME/CFS. Their conclusions (from lines 40 – 44) found that: “In addition, the committee made ‘do not’ offer recommendations for CBT ………to treat or cure ME/CFS.”

In the light of this finding, Forward-ME are mystified as to why the draft guideline discusses CBT extensively. This would appear to be discriminatory as the guideline for multiple sclerosis (MS) – a disease that has been compared to ME/CFS, at 1.5.5 states only: ‘Consider mindfulness-based training, cognitive behaviour therapy or fatigue management for treating MS-related fatigue.
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[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.
 
I dont know why you say CBT clinics have to play a part, Barry. There is no good reason for CBT to even get a mention in the guideline, except possibly as one of a list of psychological support methods, including counselling, and then only as an adjunct for those who want it.
 
Trish said:
I dont know why you say CBT clinics have to play a part, Barry. There is no good reason for CBT to even get a mention in the guideline, except possibly as one of a list of psychological support methods, including counselling, and then only as an adjunct for those who want it.
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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.
 
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The ME Association on their submission.
We wanted to say thank you to everyone who sent in their feedback on the new draft of the NICE clinical guideline for ME/CFS. We submitted the formal response to NICE as part of the stakeholder review process last Friday.

We highlighted several items we felt were of particular importance or might be challenging to implement, and many suggestions that would improve the final publication (in April 2021).

In general, the ME Association welcomes the new guideline and believes it will help improve NHS provision for people with the condition, but there were elements that we felt could be improved and we have described these in the formal response.

Link to NICE draft of the ME/CFS guideline:
https://www.nice.org.uk/.../GID.../documents/draft-guideline

All in all the ME Association response contained 171 comments relating to the main aspects of the draft. We highlighted 13 specific areas of concern/improvement that included:
- Healthcare professional involvement
- Covid-19 and ME/CFS Clinical Vulnerability
- Guideline implementation
- Including an introduction and overview of ME/CFS
- Improving Box 1 - the symptoms suggestive of ME/CFS
- Including specifics relating to exclusionary testing and co-morbidities
- ME/CFS Specialist Services
- Home visits and appointments
- Hospital care
- Illness management
- Symptom management
- Psychological support
- Medical reviews

We will issue a summary of the formal response in due course and it will be featured in the next issue of ME Essential magazine. We will also be producing a summary information leaflet for the draft guideline in January.

NICE will be publishing all stakeholder responses at some point in 2021 before final publication of the new guideline.

Wishing you all a comfortable and safe Christmas
The ME Association
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Code: 
https://www.facebook.com/meassociation/posts/3629304463793852

 
Submission from Dr Hng et al
This is what we have submitted to NICE. We have 21 signatures! Including:
Dr. Nina Muirhead
Dr. Nigel Speight
Dr. Jonathan Kerr
Prof. Malcolm Hooper
Dr. Sarah Myhill
Dr. Karl Morten
Natalie Boulton
Millions Missing France
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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.
 
Nightsong said:
research evidence" is an own goal; the psychosomaticians claim that there is "sufficient experience" from their own clinics for CBT and GET.
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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.
 
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