NICE ME/CFS draft guideline - publication dates and delays 2020

Many US patients still face huge issues because the changes from 2017 haven’t filtered through. Compulsory Medical training is essential. Media coverage essential.

Will the so called CFSME specialist clinics be handing the Psychs their P45 in April?

 

I thought I'd give these a spin for those who never saw them before:
https://twitter.com/user/status/1325930596401614849

https://meagenda.wordpress.com/2007...g-the-nice-guidelines-for-cfs-me-tom-kindlon/

What a bizarre world to live in where a specialist health service would make a submission like this.

 

THanks for posting Tom and reminding us, it reads just as shockingly now as it did back then.

 

Also worth bearing in mind that supportive CBT will, validly for many conditions, include encouragement to exercise as a way of healthier living. Far from a one-size fits all.

 

Question - regarding commenting on the draft in the designated threads - I do not have the energy to write my feedback in a well-written way - is it okay to just note my thoughts and then the people writing the s4me response to the consultation will consider my thoughts when writing the response?

 

Is there a time line for this more detailed than 'as soon as possible'? I know there is a deadline for submitting responses to NICE, but i have a really big unavoidable & non postpone-able thing i have to do regarding my own life circumstances this wk, so i wont be able to read any of it in detail till nxt wk, but i really hope to be able to look in detail at a few of the sections. Havee you (plural) decided how long you will need to collate & write up?

 

Ok thanks @Trish huge thanks to all the committee & to everyone working on it, i am soooo glad to be part of a group that producing what i know will be a sensible, scientifically sound response. I always feel really proud to be an S4 member, but somehow that is esecially true atm.

 

Apologies for the slight off topic.
Is there an archive for any guidance prior to the 2007 guidelines? Wondering if there is a timeline of what 'best practice' has done to clinicians according to guidance before then in the NHS.

 

There were no NICE guidelines for ME/CFS before the 2007 guidelines (I don’t think groups should have pushed for them as the only approaches that were likely to be recommended were CBT and GET and NICE, as a rationing body, was always likely to recommend against some tests and approaches).

The (very biopsychosocial) Royal Colleges report from 1996 was influential.

There was also the CMO working group report in 2002 (the one four biopsychosocial proponents resigned from near the end as pacing had the same billing as CBT and GET) which was sometimes referred to by ME charities but I’m not sure it had a huge influence on medical education, practice, etc.

 

I couldnt agree more

 

I am unsure what basis I was referred, but perhaps a decade before that I underwent what on reflection was an CPET and was diagnosed by two specialists following a psych interview and the diagnostic testing with ME in Edinburgh. Thanks for the comments all, I was under the impression there was prior to 2007 guidance.

 

It can be difficult to know how some of the aspirations of the guidelines that sound good will actually affect patients care, but the NICE guidelines own expectations in the sections on "How the recommendations might affect practice" seem pretty marginal. More money for ME/CFS specialists?

It's difficult to know how to interpret this.

On them saying the guidelines "raise awareness in the recommendations of the current lack of treatment or cure for ME/CFS" they say: "The recommendations reflect current practice so no impact on resources is anticipated."

Really? When did it become current practice to inform patients that there were no treatments or cures for ME/CFS?

They go on to say in a different section that "The committee reinforced there is no therapy based on physical activity or exercise that is effective as a treatment or cure for ME/CFS."

Am I being stupid or is it really hard to know what is going on here? It's a bit like these guidelines are from a different reality. Whenever I don't know what's going on with ME/CFS it has ended up being much worse that I feared... has this made me paranoid or is this a trap?!

 

I suspect that the unreal appearance of the guidelines reflects in part how many different groups of people are involved in cobbling them together. But if one was being strictly rational ne might say that if it is now acknowledged that there is no useful treatment then money can be saved by closing down all ME services. In reality I do not think what NICE says will have much if any impact on the level service provision and spending. In the current NHS those things are entirely political decisions and the trend is to underfund everything catastrophically, as you know. Money mostly gets spent when it is seen as saving other money.

I don't think it is a trap. because none of the people involved in writing it are actually the politicians wanting to cut resources. The political motives of those involved go in all sorts of other directions.

 

I don't think this would be a bad thing when it comes to patient safety. Given the current state of knowledge, what the majority of people with ME would probably benefit from most is well informed GPs, who could refer newly diagnosed or relapsed patients to trained OTs to help them learn to manage energy resources. And for severely ill patients, much better access to home GP and nursing care.

In my experience at least, OTs already have a good understanding of fluctuating, energy limiting illnesses and would probably only need a training update. They'd be well placed to pick up the new guidelines and run with them, if they had enough funding to expand the number of appointments they can offer. Physios could deliver useful services, too, but some of those currently working in the NHS really have no idea! Training up those who have only ever delivered rehab services using structured exercise would be a considerably bigger job.

None of this is in any way adequate, of course, but I'm looking at it from a safety point of view – first cut out the harm, to coin a phrase.

 

More money for ME specialists; @Jonathan Edwards has highlighted how rheumatoid arthritis treatment was turned around by specialists. However, as Jonathan has indicated, I wouldn't get your hopes up about getting more resources (e.g. to fund specialists).

I assume (haven't followed this or read guidance) that the conclusion "no impact on resources is anticipated" is based on the "current lack of treatment or cure". Jonathan also highlighted the risk of promoting "current lack of treatment or cure" i.e. you don't get the consultants who were the game changer in rheumatoid arthritis treatment.

Possibly one way to deal with this is to respond to the consultation:
1) agreeing that currently the disease pathology is not understood;
2) highlighting that "clinicians such as Professor Julia Newton, and the biomedical research teams led by Professor Newton (e.g. Cara Tomas), should be funded. This will enable expertise to develop in diagnosis, understanding the underlying disease pathology and ultimately treatment." I assume you're really talking about centres of excellence (EU ERN system).

Don't assume that those who draft policy have sufficient insight - although I'm reassured that Jonathan has inputted. I work at a junior level in (non-health) policy development (devolved Government). A colleague told me of a former colleague, who had made a mess of a public consultation (he'd missed a lot of relevant information) and needed to turn it around - so he arranged for a consultation response to be submitted --- hey presto the new policy emerged! I suggest starting off thinking inept rather than deliberate.

I suggest that you set out your concerns i.e. in a response to the consultation.

What is the last date for submitting responses to the consultation?