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

May I add statistics on ME

 

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

 

One thing that struck me about the pulsetoday comments is that there was some discontent about a largening workload for GP's where patients couldn't just be sent through to the clinics anymore. That those clinics actively hurt pwME didn't seem to be a consideration.

https://www.pulsetoday.co.uk/news/c...ecommends-personalised-care-and-support-plan/

Post from "The Prime Minister" is what I meant.

 

I don't think this has been shared yet?

Short video:
Nina Muirhead: Updated NICE ME/CFS Guidance

https://www.touchimmunology.com/imm...b/nina-muirhead-updated-nice-me-cfs-guidance/

 

search tags 'magenta' brings up this thread
https://www.s4me.info/threads/magen...gers-and-pre-adolescents-esther-crawley.4808/
link to review is last one in first post.

 

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.

 

https://twitter.com/user/status/1455233453910286336

 

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.

 

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.

 

The Sussex & Kent ME/CFS Society working hard to maintain their status as maybe the worst group in the UK
https://measussex.org.uk/royal-colleges-respond-to-nice-guidelines-october/

 

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..

.......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?

 

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.

 

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/

 

"
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

 

I bet that one day a week is a Friday or Monday.

 

ME/CFS guidance from NICE seeks to improve awareness and understanding of condition

https://hospitalhealthcare.com/news...seeks-to-improve-awareness-and-understanding/

 

Not sure they find it that hard ...