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

Reading Sharpe's comment above makes me realise that being under the ministrations of a BPS psychiatrist is going to be pretty unenviable for those with genuine mental illnesses as well, if the belief is that outcomes can only be measured in terms of patients' self reporting.

 

Gerada is the RCGP's incoming President:

https://www.rcgp.org.uk/about-us/news/2021/august/rcgp-announces-clare-gerada-as-new-president.aspx

"Professor Gerada was College Chair between 2010-2013 and has remained on College Council as a nationally elected member since. She is currently the longest serving Council member, having been continuously on RCGP Council since 1998. Dame Clare will be the first woman for nearly 70 years and the second in the College's history to hold the position of both Chair and President..."

"Her term in office will run from November 2021 until November 2023..."

"The RCGP President is the constitutional head of the College. Unlike the other Medical Royal Colleges, it is the Chair who sets the strategic direction and policy. The current RCGP Chair of Council is Professor Martin Marshall."


Dr Andrew Goddard is current President of the Royal College of Physicians (RCP):
https://www.rcplondon.ac.uk/about-rcp/whos-who/people/dr-andrew-goddard

 

I think O'Neill's logic maybe was to get a positive spin out before SMC pour treacle over everything.

 

Is the article good then? I can't see the whole thing, but the 'angry backlash from the medical profession' bit seems a bit reductive.

 

Questioning professional affiliation is a bit iffy. Every senior medical professional in the UK belongs to one of the Royal Colleges or some comparable entity, so calling out an 'august' body because it might back the view of one of its members doesn't have a lot of strength and certainly isn't going to make any friends amongst any of the Royal College memberships.

At this point I'd be inclined to wait and see how NICE fights its own corner. If there is to be some kind of inter profession conflict it would be best to see who takes lumps out of who before doing anything that might encourage the profession to close ranks against the infidel*.

*Us !

 

Like the patients who have been saying for many years how GET has seriously aversely impacted their health. It's no good arguing a therapy can maybe help some people, if you totally ignore by design those saying they have been harmed by it.

 

Image of print edition version up-thread here:

#1137

Three screenshots of expanded online version here:

https://twitter.com/user/status/1427536240711249927

 

I agree. I realize it is different in the online version but perhaps another piece can run tomorrow (given that tomorrow is publication day) in the print edition that corrects this impression? It's really jarring and misleading, and quite a major publication so it does matter.

 

see:

 

It's the Colleges that matter (RSM is a club).

The psychiatrists may well complain but their competing interest would be obvious. Those who have heard of Wessely, Sharpe and White will already know their links to PACE.

The GPs might complain but in a way they are not 'experts' here. Iamnot sure giving any chairman or president the oxygen of publicity would help!

The College that really matters is the Physicians. These are supposed to be experts and generally speaking (apart from Dr Crawley) have not got involved in therapist trials.

I am a physician. Not many others seem to have given a view apart from Dr Speight (and Drs Weir and Nacul but they were on the committee). Dr Turner-Stokes as a rehabilitationist is also a physician and it will be interesting to see if she gets involved.

 

There's a bit of me agrees with @Jonathan Edwards * if the medical profession do refuse to endorse this then it may simply highlight this fiasco [hope I'm not misinterpreting your statement Jonathan*]

*https://www.s4me.info/threads/nice-...-10th-november-2020.17687/page-59#post-363624

 

blimey. is there precedent for the royal colleges not endorsing nice guidelines?

 

This was really the "news" I got out of this piece - perhaps this was a way of getting ahead of this and framing the issue appropriately on behalf of the writer who seems to understand the public relations shenanigans happening here?

Or was this something that was either known about before, or overblown in the piece?

 

Not that I am aware of.
I wonder if this is being hyped by someone along the chain?
A huge amount of effort at NICE went into being politically correct and doing everything right for this guideline review. To say they were bamboozled would be pretty implausible.

 

I seem to remember MS saying a short while ago that several Royal Colleges were going to make their opposition known. Who might have spurred them on to do so...? I couldn't possibly speculate.

 

The following bodies:

Royal College of Physicians
Royal College of Psychiatrists
Royal College of General Practitioners

published the dreadful Joint Royal Colleges' Report on CFS in 1996.

https://shop.rcplondon.ac.uk/products/chronic-fatigue-syndrome?variant=6335269317

"Please note: this report has been withdrawn and is not for clinical use.

Report of a joint working group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners"


I don't have a PDF to hand on this laptop, but some pages can be read on Google Books.

Edited to add: PDF version here:

https://me-pedia.org/images/7/71/1996_UK_Chronic_Fatigue_Syndrome_report.pdf

 

Some posts from the public page of ME Association on Facebook:

https://www.facebook.com/meassociation

(I have inserted para spacing for ease of reading.)


ME Association
Publication of a completely new NICE guideline on the diagnosis and management of ME/CFS on Wednesday this week is going to be a major event in the history of this illness.

There is likely to be a lot of press interest (Times coverage already) and we will be providing extensive coverage on MEA social media all through the week.

The ForwardME group has been preparing a comprehensive public statement and a press statement on the guideline to co-incide with publication of the guideline.

I will be available on Wednesday and Thursday to take questions on the new guideline on MEA Facebook
Dr CS MEA


ME Association
The Forward ME group of charities and individuals has prepared a comprehensive general statement on the new guideline and a press statement

The press statement has been distributed today to all major news outlets and regional news outlets

I am currently dealing with several enquiries from the national media as a result....
Dr Charles Shepherd
Hon Medical Adviser, MEA


ME Association
RE IMPLEMENTATION OF RECOMMENDATIONS IN THE NEW NICE GUIDELINE
That’s a very good question!

This is something that the MEA will be considering in great detail once we know the reaction of people with ME to the recommendations that are contained in the new guideline

In very simple terms, NICE has also prepared comprehensive background information on various practical aspects relating to the implementation of the new guideline - including staffing and cost implications

If we assume that the new recommendations are very similar to those in the November draft, then this will clearly involve significant changes to way in which existing hospital based referral services diagnose and manage people with ME/CFS

I would hope that this process will involve meaningful consultation with people who already use these services and with the ME charity sector

As far as timescale is concerned, I would hope that any significant changes in management protocols will start to occur fairly quickly
And where there is a recommendation to stop using any form of treatment that is in the current guideline this will be acted on without delay

One very important point is that these are guidelines - doctors are not forced to rigidly follow every NICE recommendation and can still use their clinical judgement

But this obviously becomes very difficult if a doctor decides to use a treatment that is not recommended by NICE and a patient experiences harm as a result

In this situation such action could be regarded as medical negligence
Dr CS MEA

 

On the point about the Royal Colleges, what practical implications does it have if they speak up or don't speak up? What kinds of trouble could they cause to blunt any effect of the new guidelines?

 

NICE has just written to stakeholders explaining that the guideline has been 'paused'.

I don't know what to say! I am fuming.

This post has been copied and discussion is being moved to a new thread:
NICE pauses publication of updated ME/CFS guideline hours before publication - 17th August 2021

 

Does the RCPG produce training materials for GPs or commission the production of training materials?