Articles on NICE guidelines 'pause'

Yes (you are correct). Because there are no services for patients with severe ME/CFS in the UK, most CFS clinics state they only accept mild and moderate (ambulant) patients. Some very severe patients do end up in hospital, but you only need to read Jessica's book to see how inappropriate and harmful this 'specialised' rehabilitation approach is.

 

Unsurprisingly, when we carried out our Freedom of Information trawl of ME/CFS clinics in England, we found that virtually none of them would have been able to report on their outcomes. Follow-up was very poor, where it did happen the dropout rate was enormous, and independent follow-up didn't exist.

I doubt if there is a clinic in the land who could claim that they surveyed most of their patients 6 months plus after finishing treatment, let alone used anything other than questionnaires, to find out if their treatment was effective.

Most of the feedback seems to have been where the therapist chats to the patient on the final session, or hands them a form to fill in before they go. The whole thing depends on the "thank you very much doctor, I'm sure you have been a great help" syndrome.

 

Did the Liverpool clinic respond? I suspect he is referring to the clinic he used to run. EDIT: I meant the clinic Allister Miller used to run, as obviously this is who is feeding the President of the RCP the information.

If GET and CBT are so effective, why are there so many long term sufferers of ME/CFS? And why is the cost to the state for this patient group so high?

 

And the IAPT outcome measure are highly misleading, so I'd anticipate any ME/CFS patient receiving treatment via this route is going to be deemed 'recovered' however ill they are...

 

Liverpool "No formal follow-up due to the limited resources and our remit to cover the North-West Region. Patient can be re-referred and contact us for advice."

Patients are treated on an individual basis, which suggests that there is no collation of results.

 

So the clinic that Mike Beadsworth, one of the professionals who resigned from the guideline committee, now runs?

Michael Beadsworth a consultant in infectious diseases and clinical director specialist in academic medicine at Royal Liverpool University Hospital, and clinical lead for ME/CFS regional service

https://meassociation.org.uk/2021/08/bmj-article-about-nice-committee-resignations/

 

Of course the patients Millar et al do have contact with will be in a position where they'll need to keep the clinic onside for fear of upsetting their GP and because they'll need letters of support for.employers and benefits agencies.

So those patients within their orbit of influence will tell them what they want to hear - assisted by weasel wording on questionnaires.

Those who've gotten out of dodge will be reluctant to go back for more of the same - best case wasting your time and energy for no benefit.

Funny how they'll listen to those patients who have a conflict of interest (however understandable)- a conflict caused by the clinics themselves.

Yet the patients who filled out 4 different patient surveys that demonstrated a significant majority were harmed by GET.....

 

Mail online:
U-turn as health watchdog pauses publication of updated ME guidelines

Miller gets the last word again.

https://www.dailymail.co.uk/health/...-NHS-guidelines-chronic-fatigue-syndrome.html

eta: dreadful piece in Huffington post (Miller gets the last word again, again)
"Patient groups agree with the NICE recommendations, saying these therapies have left some patients feeling worse than before.
However, scientists and medical groups say otherwise, arguing that GET and CBT are the only evidence-based treatments for ME."

https://www.huffingtonpost.co.uk/en...over-me-treatment_uk_611cccd7e4b0c696810328fd

 

"The draft guidelines were predicted to stop the use of GET and limit the use of CBT which have served most chronic fatigue syndrome/ME clinicians and patients well for many years"

I'm gutted to hear that individuals like him still have the power to stop institutions in their tracks. And maintain the status quo

 

So, right there, is very good reason Miller would not want this to go through, because attention would then become more sharply focussed on why the safety of these treatments, including worsening of symptoms, was not more stringently monitored, recorded and assessed. I suspect there are significant players very scared about potential litigation fallout down the line, amongst plenty of other things of course.

 

Article from a Danish news site about health.

It has some good quotes from Peter La Cour, a psychologist who has written some brilliant texts about ME and the psychosomatic approach. But the article seems biased when it says the changes in the NICE guidelines are supported by "some ME patients and organisations" and adds that professor Per Fink says there is no evidence supporting a removal of GET and CBT as treatments.

Sundhedspolitisk Tidsskrift Sundhedspsykolog om udsættelse af anbefalinger: Patienter bliver ladt i stikken
google translation Health psychologist on postponement of recommendations: Patients are left in the lurch

Quote:
NICE's November draft was aimed at eliminating graduate rehabilitation and cognitive therapy in the treatment of patients with myalgic encephalomyelitis (ME). A radical change in the treatment strategy that professionals have criticized for not being adopted on a scientific basis. However, Peter La Cour believes this is a flawed and outright wrong critique, in which he supports the changes in the draft in line with some ME patients and organizations worldwide.

“There is no evidence that rehabilitation has any effect at all, and it was gratifying that the draft finally called for radical changes, which could be of great benefit to the extremely ill ME patients in particular. The treatment of ME is extremely halting in Denmark, and we need to look at the disorder in an innovative and not outdated way, ”he says.

 

Two more articles from the same news site:

Professor: Chokerende at se NICE bevæge sig ud på et skråplan
google translation: Professor: Shocking to see NICE moving towards a slippery-slope

Quote:

Per Fink, professor and chief physician at the Department of Functional Disorders at Aarhus University, is pleased that the English prioritization institute NICE chooses to postpone recommendations for the treatment of myalgic encephalomyelitis (ME) - in Denmark often called chronic fatigue syndrome (CFS) - on indefinite time.
He believes that the postponement of the recommendations is a sign that part of the committee does not want to compromise on medical science.

“There has been a tremendous amount of criticism of the draft from several professionals, including myself, and it seems that the criticism has been taken into account. It is gratifying that they have decided to keep the science alive and lean on the evidence in the field, ”he says.

Kæmpe skuffelse for ME-patienter verden over: Stridigheter sætter nye anbefalinger på pause på ubestemt tid
google translation
Huge disappointment for ME patients worldwide: controversy puts new recommendations on hold indefinitely

quote:

The ME recommendations from NICE can be of great importance for Danish practice, as the English Institute of Health is highly respected, of which several Danish guidelines are based on the English recommendations.

Now, professionals, politicians and patient associations need to look further into the future after NICE postpones publication indefinitely following internal disagreements within the committee. According to NICE, it has not been possible to draw up guidelines that are supported by everyone on the ME Committee.

 

I've analysed the responses to a few policy consultations (I work at a very junior level in planning policy in a UK devolved administration). These guys [Paul Garner — Lynne Turner Stokes] or whoever needed to make a reasonable rebuttal of the evidence and thereby the conclusions in the draft Guidelines. If you have folks like @Jonathan Edwards, and I gather the chair of the NICE Committee was a sharp cookie, then some vague generalisations rebutting the conclusions e.g. we know some people improve after CBT and GET because they filled in a questionnaire --- aren't effective. I can imagine the tedium of wading through that crap - so there are limits to what you can do in responding to "concerns that the draft Guidelines don't align with my self interested and unsubstantiated views".

I have some sympathy for the folks in NICE who carried out this review - they should have had some backing i.e. those in Government/leading NICE should have held their nerve and defended NICE/published the final Guidelines. Like Jonathan, I'm hopeful that sense will prevail and the Guidelines will be published without significant change.

 

https://bjgplife.com/2020/11/25/todays-best-practice-will-be-rubbished-tomorrow/
my emphasis

'.....Why do we continue to peddle outdated concepts and useless or even harmful treatments for so long? There are many reasons. Inertia, resistance to change and the conservatism of the profession are well documented. These come in part from our belief that this is what we’ve always done and it’s worked, or it’s what the patient wants. Institutional misogyny has been blamed for the continued use of valproate for treatment of epilepsy in women of child-bearing age and of pelvic mesh for surgical treatment of prolapse for years after evidence of harm emerged........'

'....We owe it to our patients to listen to their preferences, and to be as open and honest as possible about the potential benefits and downsides when recommending treatments. We must remain constantly critical of accepted practice and keep our minds open to the possibility that things can be done differently....'

Why indeed?!

 

Exactly.

 

@Jonathan Edwards these folks seems to be conspiring to create the public interest for you to publish that book --- are you orchestrating this debacle?

https://www.s4me.info/threads/guard...-pariante-april-2021.20332/page-4#post-342140

 

The National Carol Monaghan hits out over delay to guidance for ME diagnosis and management

quote:
Monaghan said: “I have watched the media dialogue around the new NICE guideline heat up during the months following the release of the draft. While I recognise that it may require time for the new guideline to be acknowledged by some within the medical community, it is of vital importance that medical professionals take notice of the patient voice and the science.

 

Is it really just a pause?

 

I think one of the challenges will be to try to manage the optics --- Royal College of Physicians will have to back down from their currently untenable position --- I'm not sure what you can give them --- suggestions welcome!

There's a good synopsis of the problem here [Prof Hughes] - sorry for the poor screenshot.

https://twitter.com/user/status/1427966144279990279