UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

ukxmrv said:
I was thinking of what we need to concentrate on now post publication. Not sure if we have one or need a new thread?

This was my list but sure to be more. Not in order of priority

1. Stop the clinics being able to carry out poor quality or dangerous CBT and GET research
2. Stop the clinics carrying out bogus surveys
3. Commission new better services
4. Audit current services to see if compliant to the new guideline
5. Join Commissioning groups and Patient groups to try and influence
6. Check when the new NICE guideline will be updated (10 years?)
7. Cochrane - keep plugging
8. Commission proper research
9. NHS webpage - update to current guideline
10. Educate GPs on the new Guideline
11. Educate current patients and new patients to make them aware of new guidelines
Click to expand...

May I add statistics on ME
 
dave30th said:
that page is gone. did anyone archive it?
Click to expand...
Esther12 said:
@Sean - was it still online when you posted it? Would be interesting if it was being changed due to NICE.
Click to expand...
I don't know, didn't check. But certainly it isn't there now.

I took that quote from the letter to the BMJ by Dr Charles Shepherd, responding to Chalder.

https://www.s4me.info/threads/uk-ni...lication-discussion.22996/page-20#post-387559
https://www.bmj.com/content/375/bmj.n2643/rr-1

I have saved his comment direct from the BMJ website.
 
Last edited:
Hutan said:
I thought the people who worked to make the 2021 guideline happen and those worked to make it good might like to know:

A link to the 2021 NICE ME/CFS Guideline will be added to the Resources sections in the online guidance documents about ME/CFS that we have for medical professionals (doctors, allied health professionals) in my regional health authority in New Zealand. The benefits of the good outcome go beyond the territory covered by NICE.

I also shared @Michiel Tack's very nice summary of related issues; @dave30th's blog and @Brian Hughes' blog about LP with my contacts in the regional health authority. Of course, some medical people do understand that there is a long way to go in making medicine more evidence-based, but, like us, are working towards it.
Click to expand...
That's fantastic news!
 
Still only able to skim --not sure if it's clear that there were two BMJ news articles,
both published 29 October 2021:

- the one Charles Shepard responded to (4 responses to date):

"ME/CFS: Exercise goals should be set by patients and not driven by treatment plan, says NICE"

https://www.bmj.com/content/375/bmj.n2643

- and the one about the 'medical leaders' feeling not being listened to (0 responses to date) :

"NICE understates role of exercise and CBT in managing ME/CFS, say medical leaders"

https://www.bmj.com/content/375/bmj.n2647
 
Last edited:
Esther12 said:
I always liked this bit from their old pages, as a possible explanation for patient surveys showing disatisfaction with CBT:

'The problem may well be that some of our treatments are too evidence based'

https://web.archive.org/web/2019041...c.uk/ioppn/depts/pm/research/cfs/health/index
Click to expand...

That is quite hilarious but also makes me sad. These are supposedly professors of psychology but they clearly have no idea what "evidence" is or what "evidence-based" means. They *nearly* get it when they say that being so "thoroughly convinced" by the "evidence" can lead to poor decisions, but they don't follow through to argue that maybe this is because the evidence is just not all that reliable. Instead, they rationalise their own poor clinical records by blaming themselves -- for their clinical enthusiasm -- instead of blaming the poor quality studies that they have produced.

These are very straightforward foibles that any undergraduate psychology student will be taught about in Research Methods 101. It saddens me that so many senior academics just ignore all that discourse in order to trot out their rubbish studies as if there are no problems to discuss.
 
Dr Alastair Miller, things to know for anyone being interviewed or engaging with media

BBC, Guardian (links previously posted on this thread) and others describe him as:
an NHS consultant physician in acute medicine and infectious disease in North Cumbria, said exercise programmes could be helpful​

Reality: Yes technically his role but entirely unrelated to ME/CFS treatment in North Cumbria or anything else.
Reality: These interviews are misleading because the public will assume there actually ARE doctors treating ME/CFS across the UK - this is not true in North Cumbria, South Cumbria or many other areas.

His context-less quotes are misleading because
  • He doesn't work in or have any role in ME/CFS any more and has not for I believe around a decade
  • North Cumbria does not have ANY infectious disease specialists in their "specialist ME/CFS service"
  • North Cumbria does not have ANY doctors of ANY kind in their "specialist ME/CFS services"
  • North Cumbria's ME/CFS service does not diagnose, it used to but they scrapped that, it does not offer any medical advice and does not advise on medication at all (links below)
  • South Cumbria does not either have any ME/CFS clinic doctors either, this is probably true of North Lancashire too
  • North Cumbria's old ME/CFS and fibromyalgia clinic morphed into a general service a little over 10 years ago, which was then renamed Persistent Physical Symptoms, all treatment was refused unless you agreed to a psych session on the 3Ps
  • Persistent Physical Symptoms is now part of the Physical Health Psychology unit, but it is not the part that deals with MS, stroke, or well understood diagnoses
  • It is held at community (cottage) hospitals, at least one of which is in the only non-wheelchair accessible part of the hospital - and upstairs.
  • Diane L Cox of PACE trial is in this area, and in-patient "rehab" is the North Yorkshire / Leeds BPS hospital unit which published a paper on their "successes" which involved a lot of removing diagnoses. I believe she's an Occupational Therapist. Severe and very severe patients with chronic fatigue syndrome: perceived outcome following an inpatient programme (2000)
So tired of hearing a doctor NOT impacted quoted and of the misleading impression that there are actually doctors involved when there aren't.

I would really like to see Dr Miller challenged on his role within the ME/CFS clinincs at present (he doesn't have one) and asked how many doctors are in his NHS trust for ME/CFS (none). Number of home visits is also zero unless something has dramatically changed.
https://php.cumbria.nhs.uk/

https://php.cumbria.nhs.uk/about-our-services/ppss
https://php.cumbria.nhs.uk/about-ou...lth-and-rehabilitation-psychology/cfs-service

I am unsure how it is ever possible to get media corrections or clarifications when such misleading content is published. I feel the public would feel very differently if they were aware that doctors were not part of these clinics.
 
Tilly said:
He needs to be reported for already going against the NICE guidelines and as he runs a centre that NICE say patients should go to and DO NO HARM most definitely needs a slap with a wet cold fish. I have one ready
Click to expand...
He doesn't run a centre. There are NO doctors at any ME/CFS centres anywhere in Cumbria, that's been the case for at least 8 years, since the North Cumbria and Northumberland Trust merger was called out... a once a month BPS doctor from Newcastle area did diagnosis only. (And botched mine by inventing a term not in SNOWMED).

Reporting for speaking as if on behalf of a clinic he does not represent in a field he does not work in is essential. Also undermining those who do work there.
 
Many patients with ME/CFS have other conditions including chronic pain and fibromyalgia which are improved with exercise as recommended in other NICE guidance. It is important that a holistic approach is taken to ensure that other conditions do not deteriorate.
Click to expand...

If thats the case why not bring all those conditions above in line with the new ME guidelines seeing as it and not the other conditons named, have just gone through the most thorough evidence gathering process in recent times, which took 4 years, and concluded that the proponents of the CBT and GET claims failed to provide evidence of their own claims despite being invited in as stakeholders and then went on to convene a round table wherby they were given another chance to do so and still failed.

It's basically saying this:

Well you may have given us all 4 years to review the worldwide literature on reiki, homeopathy and faith healing to treat or cure arthritus and to show even a modicum of efficacy but we, in the homeopathy reiki and faith healing societies, have already proved these methods cure and treat cancer, diabetes and MS. Therefore after our model and methods failed a review examination in ME why aernt NICE just treating ME with homeopathy reki and faith healing?

On one hand they say this..

Many patients with ME/CFS have other conditions including chronic pain and fibromyalgia
Click to expand...

.......yet elsewhere they claim that chronic pain and fibromyalgia are the same thing. In the NICE guildlines ME review of the past few years that has provided the new guidlines wasn't there any chonic pain outcomes included in the reviewed studies that have now been shown to be of low evidence?
 
daftasabrush said:
I feel the public would feel very differently if they were aware that doctors were not part of these clinics.
Click to expand...
And the media, who could affect this, either:

- Don't actually check the background of these eminent doctors who they have been quoting for years, or;
- Simply don't care who they are quoting as long as they are doctors/professors (because these titles gives them gravitas and were likely quoted in the SMC where they have got the quote from in the first place, so that makes them ok).

Or, both.
 
daftasabrush said:
Dr Alastair Miller, things to know for anyone being interviewed or engaging with media

BBC, Guardian (links previously posted on this thread) and others describe him as:
an NHS consultant physician in acute medicine and infectious disease in North Cumbria, said exercise programmes could be helpful​

Reality: Yes technically his role but entirely unrelated to ME/CFS treatment in North Cumbria or anything else.
Reality: These interviews are misleading because the public will assume there actually ARE doctors treating ME/CFS across the UK - this is not true in North Cumbria, South Cumbria or many other areas.

His context-less quotes are misleading because
  • He doesn't work in or have any role in ME/CFS any more and has not for I believe around a decade
  • North Cumbria does not have ANY infectious disease specialists in their "specialist ME/CFS service"
  • North Cumbria does not have ANY doctors of ANY kind in their "specialist ME/CFS services"
  • North Cumbria's ME/CFS service does not diagnose, it used to but they scrapped that, it does not offer any medical advice and does not advise on medication at all (links below)
  • South Cumbria does not either have any ME/CFS clinic doctors either, this is probably true of North Lancashire too
  • North Cumbria's old ME/CFS and fibromyalgia clinic morphed into a general service a little over 10 years ago, which was then renamed Persistent Physical Symptoms, all treatment was refused unless you agreed to a psych session on the 3Ps
  • Persistent Physical Symptoms is now part of the Physical Health Psychology unit, but it is not the part that deals with MS, stroke, or well understood diagnoses
  • It is held at community (cottage) hospitals, at least one of which is in the only non-wheelchair accessible part of the hospital - and upstairs.
  • Diane L Cox of PACE trial is in this area, and in-patient "rehab" is the North Yorkshire / Leeds BPS hospital unit which published a paper on their "successes" which involved a lot of removing diagnoses. I believe she's an Occupational Therapist. Severe and very severe patients with chronic fatigue syndrome: perceived outcome following an inpatient programme (2000)
So tired of hearing a doctor NOT impacted quoted and of the misleading impression that there are actually doctors involved when there aren't.

I would really like to see Dr Miller challenged on his role within the ME/CFS clinincs at present (he doesn't have one) and asked how many doctors are in his NHS trust for ME/CFS (none). Number of home visits is also zero unless something has dramatically changed.
https://php.cumbria.nhs.uk/

https://php.cumbria.nhs.uk/about-our-services/ppss
https://php.cumbria.nhs.uk/about-ou...lth-and-rehabilitation-psychology/cfs-service

I am unsure how it is ever possible to get media corrections or clarifications when such misleading content is published. I feel the public would feel very differently if they were aware that doctors were not part of these clinics.
Click to expand...

I can tweet the information if that will help? embarrass the BBC and journalists. I'm just about to do that with the services in my area as it is a joke. They have belittled and made the link child like and don't mention well anything medical it is all given headings of well look https://me.ecch.org/rough-guide-to-me-cfs/
 
daftasabrush said:
Dr Alastair Miller
Click to expand...
"
For my last 10 years of full time practice, I was a Consultant Physician at the Royal Liverpool University Hospital, an Honorary Senior Lecturer at the Institute of Infection and Global Health at the University of Liverpool, an Honorary Fellow at the Liverpool School of Tropical Medicine and an Honorary Consultant to Public Health England.

I retired from full time practice in 2014 and since then have been Deputy Medical Director of the Joint Royal Colleges of Physicians Training Board (JRCPTB) based in London 2 to 3 days a fortnight and a Consultant doing 1 day a week on the acute medicine unit at Cumberland Infirmary and occasionally at West Cumberland Infirmary. "
https://www.ncic.nhs.uk/consultants/alastair-miller
 
ME/CFS guidance from NICE seeks to improve awareness and understanding of condition
Suspecting ME/CFS

NICE accepts the absence of a specific diagnostic test for ME/CFS and instead indicates that healthcare professionals should rely upon a clinical diagnosis where the following symptoms have persisted for a minimum of 6 weeks in adults and 4 weeks in children.

  • Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest
  • Post-exertional malaise after activity in which the worsening of symptoms, is is often delayed in onset by hours or days, is disproportionate to the activity and has a prolonged recovery time that may last hours, days, weeks or longer.
  • Un-refreshing sleep or sleep disturbance that may last hours, days, weeks or longer and might include feeling exhausted, feeling flu-like and stiff when walking.
  • Cognitive difficulties which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking.
Click to expand...

The updated guideline is extensive, covering areas such as assessment and support, the importance of multidisciplinary care, symptom management as well as the need for healthcare professional training. Perhaps one of the most important sections in the guideline is the recognition that previously, people with ME/CFS “may have experienced prejudice and disbelief and could feel stigmatised by people (including family, friends, health and social care professionals, and teachers) who do not understand their illness.”
Click to expand...
https://hospitalhealthcare.com/news...seeks-to-improve-awareness-and-understanding/
 
Barry said:
Not sure they find it that hard ...
Click to expand...
wolf_in_sheeps_clothing___set_it_off_featuring_wil_by_dgoldish_dcy91pv-pre.jpg
 
You must log in or register to reply here.
Back
Top Bottom