Implementation statement in support of ME/CFS diagnosis and management, NICE, draft published for consultation

[Jonathan Edwards]

Moved from the UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion thread.

Dear Jonathan


Further to the email sent last week, please find attached the draft implementation statement in support of our guidance on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome. These statements are produced following review by the guideline resource and implementation panel of NICE guidelines that have a substantial impact on NHS resources and workforce. Panel members are from NICE, NHS England and NHS Improvement, Health Education England and, if appropriate, Skills for Care. The panel does not comment on or influence the guideline recommendations outside NICE’s usual consultation processes and timelines.


Whilst this is not a formal consultation process, we would welcome comment from stakeholders who were represented at the roundtable workshop held last October. Please could you respond on behalf of Science for ME?


In response to stakeholder request we have extended the deadline for response to 9am Thursday March 24th.


The statement will then go through the NICE editing process and to the GRIP panel for final approval prior to publication. Stakeholders will be advised of the publication date once agreed.


Very kind regards


Heather

 

[Jonathan Edwards]

I hope people can access the document.
I would be interested to know what they think.

 

[Hoopoe]

Since not everyone will be able to open docx files, here is the same file in pdf format.

 

[Jonathan Edwards]

A couple of initial thoughts.

Firstly it talks of LP no longer being recommended. I hope it never was.
It describes Doctors with ME as the international professional association for post-viral disease .. Whether this is appropriate I am not sure.

 

[MEMarge]

@PhysiosforME do you have some feedback for this?

 

[Jonathan Edwards]

I remain concerned about the literature put out by Doctors for ME. The Educational material e.g. 'What is ME' is way off balance. It is likely either to mislead both patients and doctors or to give doctors a good reason for being sceptical about the whole 'physical illness' story.

 

[Trish]

A couple of initial thoughts.

Firstly it talks of LP no longer being recommended. I hope it never was.
It describes Doctors with ME as the international professional association for post-viral disease .. Whether this is appropriate I am not sure.

I doubt LP was ever officially recommended, but I wouldn't be surprised if Crawley and her chums were recommending it with their awful clinical trial as 'evidence'. I'm glad that should no longer be possible, but am concerned that other similar things are still being recommended, for example I understand some doctors refer people with ME to the Optimum Health Clinic, which I understand has an LP like offering on its menu.

As for the Doctors with ME site, I think it's the best we have in terms of organisations for professionals that other doctors might take notice of. And they do have links to some fairly good resources for medical education about ME. What else is there?

 

[Wonko]

The what else is there argument is surely what has taken so long to at least officially overturn.

It seems a tad iffy to say it's not okay that it harmful, for the opposition to use it, but to use it ourselves.

If doctors for me are releasing duff info, or have an incorrect viewpoint, that is not okay, and is likely to come back to bite us at some point
.

 

[Trish]

I remain concerned about the literature put out by Doctors for ME. The Educational material e.g. 'What is ME' is way off balance. It is likely either to mislead both patients and doctors or to give doctors a good reason for being sceptical about the whole 'physical illness' story.

Oh dear, yes I have just read this section on DwME website:
https://doctorswith.me/home/what-is-me/
It's badly written and confusing, with some misinformation.
For example the Karl Morten diagram at the top is largely hypotheses, not established evidence.

And this sentence, admittedly out of context:

Evidence-implied management and risk-minimisation strategies exist, corroborated by general empirical findings that are compatible with patient experience.

I think it's trying to say 'patients find pacing helpful.'

 

[JemPD]

completely agree

The what else is there argument is surely what has taken so long to at least officially overturn.

It seems a tad iffy to say it's not okay that it harmful, for the opposition to use it, but to use it ourselves.

If doctors for me are releasing duff info, or have an incorrect viewpoint, that is not okay, and is likely to come back to bite us at some point
.

 

[Nightsong]

A few random thoughts:
1) There seems to be an assumption throughout this document that there currently exists a pool of ME/CFS "experts" who need to be further empowered in various ways. The people currently claiming to be experts are mainly the same liaison psychiatrists and rehabilitationists that have harmed us to date. I think it needs to be acknowledged that the development of de novo expertise is required, rather than the focus being to keep the same useless people, with the same vested interests, in their cosy jobs.

2) "Lightning Process" is misspelt "lightening process".

3) "Access to dietitians with a special interest in ME/CFS should be assessed" - seriously? There is no evidence for any specific dietary intervention. Those with the gastroparesis-like set of symptoms (that I remember discussing my own experience of previously on S4ME) probably need to see a gastroenterologist or, better yet, a neurogastroenterologist.

4) The document obviously mentions the implementation of the CBT recommendation. In my opinion CBT practitioners should not be part of an ME/CFS MDT; this should be something that can be referred-out for only if the patient explicitly requests psychological support.

5) As Jonathan Edwards says, I am not sure that DwME could be considered the "international professional association for post-viral disease". It has produced too much dubious material to earn such a distinction.

 

[Jonathan Edwards]

An interesting point is that nowhere in this implementation document is there any mention of which specialty clinics should come under (other than paediatrics).

 

[Trish]

Ha, nobody wants us. Except of course the rehab clinics and psych based fatigue clinics who have already made it clear they don't agree with or intend to follow the guidelines.

On the subject of Doctors with ME, I think we should recommend removal of them as the main source of expertise and perhaps replace with Forward ME. The grounds for saying this could include that they are a new and as yet unproven organisation with mixed quality materials.

It does particularly bother me that NICE are recommending training for clinicians without any clear pathway for that training. I suspect most CCG's will ask current services to provide the local training. Which in most cases would be disastrous.

I am also concerned that they specify OT's, physios and CBT therapists to deliver services, without mentioning the possibility of specialist nurses, but I guess we lost that battle with NICE who did not take up that recommendation from our submission to the draft consultation.

 

[JemPD]

I like the examples of good practice in the document, but like @Nightsong i worry about who these 'experts' might be. It'l be likely disastrous if those who argued so vociferously against the GL changes were the ones given the task of implementing them!

 

[JemPD]

On the subject of Doctors with ME, I think we should recommend removal of them as the main source of expertise and perhaps replace with Forward ME. The grounds for saying this could include that they are a new and as yet unproven organisation with mixed quality materials.

Oh goodness yes, it worries me that DwME would be recommended i mean some of them are marvellous & the CPD module from Nina Muirhead is great i think, but yikes some of it, the bits Jonathan referred to, & especially the communications stuff banging on & on with their favourite term 'medicolegal' repeatedly, is very unhelpful imho.

It does particularly bother me that NICE are recommending training for clinicians without any clear pathway for that training. I suspect most CCG's will ask current services to provide the local training. Which in most cases would be disastrous.

Indeed, current services providing it would be potentially catastrophic if they are the 'we still do GET but have renamed it brigade'.

Perhaps it would be better to recommend training that we support - like Nina's CPD module, or maybe a couple of the 'dialogues' videos? What was that MIMS CPD module like? i never watched it but saw we had a thread on it.

 

[JemPD]

I do like the highlighting of social care/adaptations in the document. Although i wish it said 'Access to social care support & aids/adaptations'. Rather than simply social care, as in 20 yrs i only ever met one HCP who thought anyone with ME needed them!

 

[Midnattsol]

3) "Access to dietitians with a special interest in ME/CFS should be assessed" - seriously? There is no evidence for any specific dietary intervention. Those with the gastroparesis-like set of symptoms (that I remember discussing my own experience of previously on S4ME) probably need to see a gastroenterologist or, better yet, a neurogastroenterologist.

Dietitians do not just prescribe dietary interventions, but help assess if dietary needs are met, and that a person's intake of all nutrients are adequate. This is a problem in many illnesses with muscle weakness, fatigue, cognitive impairments etc. For gastroparesis there are dietary interventions (with various levels of evidence behind them) that are being used, and a (neuro)gastroenterologist might well refer someone with these problems to a dietitian to see if dietary changes help.

Otherwise agree with what is being said.

 

[Nightsong]

On the dietician-with-a-specialist-interest recommendation - I thought this was bizarre, but it's specified in the GL ("Refer people with ME/CFS for a dietetic assessment by a dietician with a special interest in ME/CFS if they are (a) losing weight and at risk of malnutrition; (b) gaining weight; (c) following a restrictive diet"; 1.12.22). You might as well suggest that people be referred to a unicorn. As far as I know dieticians with a specialist interest in ME/CFS do not exist.

Looking at the GL again, we're stuck with either physiotherapists or OTs on these "specialist teams" (e.g. 1.11.8 "Refer people with ME/CFS to a physiotherapist or occupational therapist working in an ME/CFS specialist team if they ..."). We're also stuck with physiotherapists overseeing physical activity or exercise programmes (1.11.12, p31). Interestingly, the GL does not say that CBT therapists should be on the specialist teams, only that they currently are (p83).

Undoubtedly NHS England will want "specialist teams" to consist of a physio, OT and CBT therapist. Cheap and congruent with current service provision.

The examples of good practice sound reasonable. They point out useful educational resources, such as the Dialogues videos; perhaps there are others that should be mentioned?

It says twice that there should be "no decommissioning of specialist ME/CFS services". I think this should be reconsidered. The GL says nothing about maintaining existing clinics as far as I remember, only that there should be specialist provision. It may well be more appropriate to decommission some existing clinics and build up new specialist teams e.g. under the rubric of general medicine.

 

[JemPD]

It says twice that there should be "no decommissioning of specialist ME/CFS services". I think this should be reconsidered. The GL says nothing about maintaining existing clinics as far as I remember, only that there should be specialist provision. It may well be more appropriate to decommission some existing clinics and build up new specialist teams e.g. under the rubric of general medicine.

yes, i mean what are they doing anyway?

 

[Sarah]

1.

Local systems should aim to implement what they can of the new guideline, using currently available staff and resource until commissioners and providers agree the appropriate local infrastructure for service delivery.

I think this might ideally be clarified by reminding that interventions the guideline states should not be offered, should no longer be offered, to avoid any ambiguity re selectively applying do not offer recommendations while commissioners and providers work things out.

2. It could perhaps be suggested to include an access to information paragraph that services should review their information and literature, including online materials, to ensure it is guideline compliant and does not mislead in any regard.

3. 'Regular reviews' omits that 1.7.6 and 1.15.3 recommend review more frequently than six months/annually if needed depending on severity and complexity of symptoms (and effectiveness of any symptom management), which may be relevant to funding and capacity.

4. I think Equitable access to care and support could explicitly mention flexible provision for severe and very severe as the document acknowledges a significant percentage of people with ME fall within this category on page 1 - thinking of home visits, for example. It should I think include the recommendation numbers 1.17.5 and 1.17.6. Likewise the section Specialist support for energy management does not give recommendation number. 1.17.8.