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

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

 

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

 

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

 

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.

 

@PhysiosforME do you have some feedback for this?

 

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.

 

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
.

 

completely agree

 

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.

 

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

 

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!

 

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.

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.

 

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!

 

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.

 

yes, i mean what are they doing anyway?

 

1.

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.