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

https://twitter.com/user/status/1454400956423081988


https://twitter.com/user/status/1454564295392567299

 

https://twitter.com/user/status/1454788331959693313


https://twitter.com/user/status/1454836410528186375

 

It's a pity that when a NICE guideline is rewritten (particularly after such a long time) it is not a mandatory requirement that medical staff/experts dealing with that particular patient group have to complete a CPD.

I would like to see all those involved in ME/CFS clinics at least do Dr Muirheads training course. In fact it would make an interesting research study.

 

crikey. wish i lived in Bolton

 

https://twitter.com/user/status/1454848065886695425

 

As Dr Wall is the director of clinical commissioning for Bolton CCG, perhaps someone on Twitter could flag this to the charities for their liaison efforts? Could be a useful ally.

Another aspect to the coding issue is that large coded data sets are increasingly being used for research; e.g. there was a recent long COVID related population-based cohort study that used coded data acquired from the TPP SystmOne and EMIS systems used in primary care, so, if people with ME are being coded incorrectly, that has the potential to affect future research.

 

Sorry I am just catching up. Why is PH tweeting that he is "retiring at 60" (and is it anything to do with his quite odd (the pictures?) denial of patient harm)? Is he really retiring? Is this new information?

 

I assumed this was a largely financial issue, as he complained about all the paperwork involved in retiring then start again to work for the NHS the next day on a new contract.

So an administrative retirement rather than a real retirement.

 

https://twitter.com/user/status/1454408825344339972

 

https://twitter.com/user/status/1454889667766128642

 

https://www.bmj.com/content/375/bmj.n2643/rr-1

Rapid response to:

ME/CFS: Exercise goals should be set by patients and not driven by treatment plan, says NICE
BMJ 2021; 375 doi: https://doi.org/10.1136/bmj.n2643 (Published 29 October 2021)Cite this as: BMJ 2021;375:n2643

30 October 2021
Charles B Shepherd
Physician

Medical Adviser - ME Association
ME Association, 7 Apollo Office Court, Radclive Road, Gawcott, Bucks MK18 4DF

Rapid Response:
Patient reports of harm from GET cannot be ignored
Dear Editor

Professor Trudie Chalder from King’s College Hospital states that:

“The NICE guidelines for CFS/ME are at odds with the research evidence. Researchers from different institutions in different countries have found graded exercise therapy and cognitive behaviour therapy to be effective for some patients with CFS.

Evidence has shown they reduce fatigue and improve functioning without harm, if delivered by trained therapists in specialist clinics. Being a clinician and researcher in this field, I can’t help but think clinicians will be confused by this message from a respected organisation.”

Having carefully reviewed all the very extensive evidence on efficacy and safety for graded exercise therapy (GET) from relevant clinical trials, medical experts and from people with ME/CFS, the NICE guideline committee concluded that in addition to there being no sound evidence for efficacy for GET there was also consistent patient evidence of harm, sometimes serious and persisting, occurring

Patient evidence on the use of GET that was collected by the Forward ME group of charities during the guideline development process (1). This was independently analysed at Oxford Brookes University. 67% of people who had been prescribed GET reported a deterioration in physical health and 53% reported a deterioration in mental health. Many of these people had been under the supervision of NHS referral services for ME/CFS.

Furthermore, the website for the King’s College Hospital ME/CFS service (2) states under ‘Information for Patients':

"There are some side effects associated with the treatment of CSF (sic). These may include the following:

You will experience an initial increase in symptoms. This is natural, as in being consistent you will be being active when you don't feel like it. You will get more muscle ache, more fatigue etc. Remember - this is the bodies normal response, it does not mean a relapse of your illness. Providing that everything has been done gradually, and you have not been over ambitious, this should not be too painful, and it should pass after a few weeks at most".

Treatment programmes that result in symptom exacerbation are not recommended in the new NICE guideline.

This new NICE guidance should now be acted upon without delay by all health professionals who are managing people with ME/CFS.

References:

1 Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET intervention programmes. Forward ME, 2019

https://meassociation.org.uk/wp-content/uploads/NICE-Patient-Survey-Outc...

2 King’s College Hospital CFS/ME service - Information for Patients:

https://www.kcl.ac.uk/ioppn/depts/pm/research/cfs/patients/self-help

Ends

Competing interests: Member of the NICE guideline committee on ME/CFS from 2019 to 2021

 

Dr. Phil Hammond has now read the guideline:

 

Absolutely bloody hilarious that he tweeted reactions that morning, before he'd even bothered to read it...

 

Oh my, he and his team just went full on troll mode. This is wonderful. The norwegian LP'ers don't even want to be associated with this guy.


The case of the spider woman

We undertook a course of two sessions of hypnotherapy; after the first session she felt happy to touch her children’s toy spider and visit London Zoo’s spider house to observe the inmates. She rang a day later to say she had had a great time in the spider house, staying in there for over an hour, peering at the creatures and tapping the cages to see how they moved. She realised that she hadn’t actually seen a spider close up for decades, as usually she would be running fast in the other direction.

After the second session she said she would be happy to go home, find a house spider and touch it. She again had no trouble accomplishing her mission and was last seen happily heading off for India and Pakistan, secure in the knowledge that when she next met one of the furry eight legged creatures which are numerous in those parts, she’d be fine..


He sounded so cute back in 2003, whatever happened to him

 

https://twitter.com/user/status/1454604035462467591

 

Nice to see that someone standing up for pwME and the science-based guideline review, is accurately describing detractors as a "small but vocal minority". Something they have so often accused us of being.

 

What treatments proven to work? There are none yet. Feel he is implying here there are some, not hard to guess what he thinks they are.

 

Yes, I've wondered what it was that made them think the guidelines were "implementable" and what if any wording tweaks /concessions were made. I wonder if they still believe that now after the rc joint statement.

Even more shocked at the blatant bias of BMJ simply republishing it verbatim. Is it always that prejudiced?!!!
Wherever is journalistic integrity, fact and evidence based reporting (forget its a medical discipline) or at least a modicum of the balanced reporting principle gone?
And omg the comments under the pulse article (presumably by GPs), positively rabid virtually every one needing moderation. All this hatred.

No wonder treatment of MEeps is so horrendous if the main (?) medical magazine has been shamelessly doling out propaganda like that for decades.

I knew it was bad, but not this bad.

I'm not sure reading this twaddle is good for my sanity! Before, I suspected it might take a decade. but thought if NICE came up trumps we'd get a fresh start (however bitterly and won at high cost) and prejudice, dismissal, stigma, and maltreatment, would eventually die out as the PACE trial influencers gradually retired.

Seeing the extent, just how endemic its become now I fear it will just self perpetuate like other 'learned prejudices' for want of a better description. No wonder we get traumatised after gaslighting and try to avoid medical doctors!!

How on earth do you all here manage to stay positive??

So very grateful for the doctors, other practitioners and professional voices who have had the courage to speak up this week, defended the brave committee's (evidence based) conclusions and challenge the lunacy. You couldn't make it up.

 

Following on from Brian Hughes incisive piece on the role of the medical Royal College, @dave30th has publish tonight a further Trial By Error blog pulling apart the defences mounted by two PACE authors and the contents of the joint Royal Colleges statement:

see https://www.virology.ws/2021/10/31/...28Lx6gYGCqysEaBcjJV2phKxMOHdZJvdtttUnfDsjBL-s

As always a joy to read. Let’s hope these ‘medical leaders’ are reading Brian and David’s pieces and feeling suitably foolish, though unfortunately logic and even ridicule may be unlikely to dent their misplaced sense of entitlement that is positively Old Etonian in its scale.