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

Yes. He (and others) have also been busily scrubbing mention of 'Graded Exercise Therapy' from their courses now that it is more widely known that GET has a bad reputation and is no longer supported by NICE.

Of course, they still prescribe GET for their clients under different names (and acronyms). That much hasn't changed.


ETA: if I remember correctly, Butler even had an FAQ somewhere to correct 'misconceptions' about the PACE Trial.

 

Yesterday I posted here a question about Brian Hughes' blog article on the history of the review of evidence on ME/CFS commissioned by NICE.

I deleted the post after I had received a reply from Brian Hughes.

He gave me the permission to share his reply here:

 

Via e-mail:

Daily Digest: Chat to NICE ME/CFS guideline committee members

(There are only 100 spaces to attend so register now!)

After too many years of waiting, the final version of the new ME/CFS guideline developed by NICE will be published on the 18th August 2021!

On Tuesday 24th August at 5pm, we’re holding a community Q&A, and will be joined by two of the NICE committee members, who have spent almost 3 years working on this guideline.

Register to attend
We’re excited to welcome:

• Adam Lowe, lay member and person with ME
• Caroline Kingdon, Research Nurse and Research Fellow working with the UK ME/CFS Biobank

This is your chance to delve into more depth around the guideline, ask questions about the processes that were undertaken, or find out what these committee members see as the most noteworthy recommendations this guideline makes. You could ask how they see care for people with ME changing, or what they think the next steps are now the guideline is published.

They can’t tell us what other committee members said during meetings, but they will answer all your questions to the best of their ability.

 

Isn't the point of a committee to discuss things, and hopefully reach agreement on how to proceed?

Virtually everything that happened in the committee will have been in the form of words, spoken or written.

So a talk, where nothing that anyone said in the committee can be discussed/told/revealed, strikes me as..an odd thing.

So, are we to ask what type of pizza they had, or how much various drinks were liked (obviously respecting the confidentiality of not naming committee members in the answers)?

 

There’s an interesting quote which caught my eye in the York report, which makes it very much more explicit that GET is considered an essential part of CBT for ME than I’ve seen stated anywhere else. My recollection and general impression was that they were always talked about by the BPS cabal as if they were two entirely separate “treatments”.

“A controlled trial of ‘modified CBT’ used a different form of treatment without graded activity, which is normally considered an integral part of CBT.” (My bolding)

 

We can talk in generalities ('the committee felt') or even what we personally think ('I felt'), but can't say, 'Charles Shepherd said this...'

It's basic Chatham House Rules: https://www.chathamhouse.org/about-us/chatham-house-rule

We can also say 'this is my interpretation of this part of the guideline' or 'this is what we were trying to do' and 'this is the impact we wanted to have'.

Mainly, though, the value is in discussing what the guideline actually means for patients who aren't necessarily up on NICE lingo and may not be part of a forum such as this.

 

I'm not able to attend virtually, but I'll note here one of the things I'd like to know, assuming there have been no major changes: Namely, are all the current ME/CFS clinics are going to be closed to new referrals, whilst the transition is made to offering patients social rather than healthcare support?

[I realise some folk may disagree, but this seems the obvious way to go. Clinics that are unable to offer any healthcare not already available via GPs are not only a shameful waste of taxpayers' money, they fail patients and present a risk of harm by pressuring them to attend useless appointments. It's worthwhile for people with ME to put energy into receiving support with employment, benefits, housing, education, or managing daily living – but not into being given half-baked advice about pacing that they could read in a few paragraphs at a time of their choosing, and revisit as often as they like if they find it difficult to take in information.]

 

Curious also to know if the changes will apply to MUS/PPS referrals/clinics.

 

I'll note any questions that come up and see how much time we have. But if I don't get to it, I can always answer on here after the 18th.

 

Thank you!

 

I don't see this as likely and I am not sure that it is as simple as that.
If there is going to be any sort of forward-looking care system for ME/CFS that involves people with specialised experience (Caroline Kingdon or Luis Nacul for instance) who understand the issues around diagnosis and continuing care then we are going to need specialist centres. Without these apart from anything you get no research. We need places where PWME can return to check their diagnosis, separate it from intercurrent problems, assess needs for aids in the home, manage severe periods when feeding may be a problem and all sorts of other things. GPs on their own are not going to be able to provide the sort of care that is really needed.

The only way to get to that situation that I can see is for existing centres to shift emphasis and staff complement over a period of time. Shifts in staffing have occurred repeatedly over the last forty years in most specialities (e.g. rheumatology). Physiotherapy used to be the main staff component for rheumatology. Now it is minimal and largely provided from outside. Nursing activities have transformed from ward care to other things. And so on. These changes tend to occur over a period of only a few years - often not more than five.

The situation following the 2021 guidelines clearly looks as if it ought to call for a major shift in staffing from psychology and physio to nursing and OT but closing clinics does not seem to me to be a sensible option.

 

I was not aware that me centers, that actually exist, did any of those things.

I was under the strong impression that they very carefully and specifically did not.

 

Some specialist centres ( eg the one I formerly attended about 10/11 years ago) are now headed by a psychiatrist.

I cannot see that this is appropriate. How can staffing issues like this be dealt with?

 

I would agree if there were any specialists available, or any existing understanding of what needs to be monitored and tested and reviewed, as happens in other specialisms. But these services, and the expertise to run them, need to be built from the ground up. I don't know what the clinics are supposed to offer in the meantime?

If their function were to have interested clinicians listen to patients, learn in depth about the clinical picture in order to improve diagnostic skills, gather information about what people need in order to live with ME as best they can, and facilitate research, that would be very positive (at least for those able to attend). But that requires a level of investment in the future – and clinical humility – that's been conspicuously absent for the 45 years I've been a patient. Maybe it will change?

 

Therein lies the rub!
We had one of the above, Luis....and also had the expertise and oversight for Caroline and the LSHTM under their research programme in East Anglia.
This expertise and backup is very thin on the ground; or CCGs have a resistance to change and a culture which needs turning around.

 

We have some long standing and reasonable practitioners ( GPWSi, OT's physio) within our long standing local Specialist Service which covers Norfolk & Suffolk.

The problem inherently lies with the provider senior management (A CIC arrangement- ie 'privatised' provider), with the controlling Norfolk & Waveney Alliance and 5 CCGs who refuse to prioritise this need or commit it seriously to their long term plans.
Waveney effectively "squandered the professional expertise" of the late Dr Terry Mitchell (his words); someone whose clinically effective approach was adopted by the DOH direct funding of a national ME clinical roll out in 2004!

A consultant led specialist multi disciplinary service, with domiciliary support to plan for for 20% - ie the severely affected, training and support for GPs etc, prescribing rights and budget, and so highly regarded and respected- RIP Dr MItchell....

17 years later, we are still fighting the battle but see tiny a glimmer of light (Suffolk Alliance) at the end of a very, very long tunnel.....

Suffolk & North Essex Alliance will be an interesting test of the new NICE Guidance - because at least they listened in 2007 and tailored their approach to local demonstrated need and a model of co production with us.

We are in conversation as we speak with them and hope Jo Edwards may provide some help and be icing on our cake to make it happen??!!

Watch this space.....! We owe this as a tribute to Terry Mitchell and his family, for his most remarkable insight, skill and commitment.

 

PS the patient tariff for Terry in 2007 was about £350 per patient whereas 'ol PW at Barts was charging £4500 for a limited crap service!
( All data documented and presented to Strategic Health Authority before Landesly and the Tory"reforms" kicked in!)

 

An article about the upcoming new NICE guidelines on a Danish medical/health news site

Sundhedspolitisk Tidsskrift: Kontroversiel anbefaling udskudt efter 4.000 høringssvar
google translation: Controversial recommendation removed after 4 000 consultation responses

quote:
The draft from November calls for a radical change in the treatment strategy, which has caused a furore among some clinicians and professionals in the field. They have criticized the change for not being adopted on a scientific basis. Conversely, the draft has aroused great joy among some ME patients and organizations around the world, who for a number of years have fought for this very change.

 

That is how I have seen services run by people like Amolok Bansal and Luis Nacul. I appreciate that these may be the exceptions but I don't see it being a good idea to shut everything down.

Because that simply would not happen because nobody would have any incentive to start. If you advertised for people for new services you would just get people who had trouble finding any other job. I think there must be some value in keeping people who are at least are interested in the illness, even if up to now things have been handled badly.

I am as concerned as anyone about allowing the same old same old ways to carry on under another name with current personnel. I have serious reservations about having a guideline that says no to CBT and GET and then has lots of other stuff on management plans that look equally poorly evidenced.

BUT, I actually think the committee got the balance right because shutting everything down will simply put an end to any ME/CFS service. All what would be left would be IAPT to refer people rediagnosed as MUS.

 

And that is our greatest fear, MUS, IAPT and FND.....