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

Status
Not open for further replies.
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.
 
Peter Trewhitt said:
  • Dr Clare Gerada - Former Chair of the Royal College General Practioners (wife of Simon Wessely)
Click to expand...

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
 
Peter Trewhitt said:
If any of the Royal Societies do explicitly reject the new guidelines would it be worth pointing out the links of prominent GET/CBT proponents to these organisations? However my memory is terrible and I am struggling to draw up the list:

  • Prof Sir Simon Wessely - Former President of the Royal College of Psychiatrists and the Royal Society of Medicine.
  • Prof Michael Sharpe - Previous Royal College of Psychiatrists’ Psychiatric Academic of the Year
  • Prof Peter White - ?
  • Dr Clare Gerada - Former Chair of the Royal College General Practioners (wife of Simon Wessely)
Click to expand...
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 !
 
upload_2021-8-17_13-15-59.png

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.
 
Arvo said:
Indeed. I would not call this "opaque". Jonathan Edwards is presented as an expert in clinical trials, and then by (weirdly) placing the word NICE instead of e.g. "those" in his remark it refers (or seems to refer) directly to the NICE review being "deeply flawed". Even more so because the whole clear point that the article is trying to make is that the NICE review is no good and the whole medical profession is opposing this en masse. @Jonathan Edwards , if I didn't know who you were I would have thought you were deeming the NICE review deeply flawed as someone with extensive knowledge in these things; you are portrayed as one of the experts opposing the guidelines, and your expertise explicitly used to give weight to that. I know you can't run after everything, but given that this is a big paper and your expert opinion carries weight, it might be a good idea to insist on a clarification or rectification.
Click to expand...

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.
 
youngscum said:
Is the article good then? I can't see the whole thing
Click to expand...

see:

Dx Revision Watch said:
you need to click through to Adam's post on Twitter then click on the left hand image to view it enlarged, then click on the arrow on the right of the image viewer screen to view the second and then third image (apologies if I'm teaching grannies to suck eggs).
Click to expand...

Dx Revision Watch said:
There are three screenshots of the online article in this Twitter post:

Click to expand...
 
Peter Trewhitt said:
If any of the Royal Societies do explicitly reject the new guidelines would it be worth pointing out the links of prominent GET/CBT proponents to these organisations?
Click to expand...

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.
 
Sean said:
Wiborg (2010)

https://pubmed.ncbi.nlm.nih.gov/20047707/

1. Summary: CBT does not increase physical activity in CFS patients, as measured by actigraphy. In particular, the self-report fatigue and actigraphy results did not correlate, so there is simply no possibility of CBT having a causal effect on activity levels.

2. It came out before PACE (Feb 2011).

3. @Tom Kindlon asked the PACE authors why they dropped actigraphy for the outcome (after collecting a full set of baseline data). Their answer (on the public record, in a formal journal), was that the patient organisation involved in the trial (Action for ME) had agreed/advised (?) that the actimeters themselves were "too much of a burden on patients".

Actimeters are deliberately designed to be as unobtrusive as possible, and weigh less than 50gm (1.75 oz). I have a light short-sleeved summer cotton shirt that weighs 151gm. Wearing that is no burden.

4. Subsequently, information that came out of an FOI by @JohnTheJack revealed that the reason PACE gave to the Trial Steering Committee (?) for dropping the actigraphy was that results of the Wiborg study were negative, they did not support an effect from CBT. PACE argued that they should only be required to use measures that gave positive results.

Let that sink in. They are claiming to be exempt from falsifiability. To be allowed to use a methodology that can never prove they are wrong.

And so here we are...
Click to expand...

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
 
youngscum said:
blimey. is there precedent for the royal colleges not endorsing nice guidelines?
Click to expand...

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?
 
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
 
Last edited:
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
 
Status
Not open for further replies.
Back
Top Bottom