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

He might be referring to Live Landmark as a recovered patient, rather than himself. Not very clearly stated..

 

Trial by Error by David Tuller Lightning Process Star Complains About NICE; Struthers Nudges Cochrane to Keep Up

Quote:
Landmark and her comrades in the GET/CBT/LP ideological brigades have been humiliated publicly by NICE, so it is understandable that they are throwing tantrums–even one as divorced from reality as this article. Landmark’s arguments can’t be taken seriously–except perhaps by those whose core financial and reputational interests are threatened by NICE’s in-depth analysis of the deficiencies of the evidence.

ETA: Article is also shared at the Cochrane review thread here

 

https://www.rcpch.ac.uk/resources/me-cfs-nice-clinical-guideline-member-briefing

.Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) - Member
briefing on new NICE guideline

On 31 October 2021, the National Institute for Health and Care Excellence (NICE) published an updated version of the ME/CFS clinical guideline.

The RCPCH consulted on the guideline and met with NICE as they worked with patient groups and representative organisations to finalise the guideline.

This briefing, which includes our view on some of the new recommendations, aims to support paediatricians in taking the new guidance forward, which is now applicable across England and Wales.

Last modified
16 November 2021
Post date
16 November 2021.

NB LOcalME note they are 'Changing the wording again............'

RCPCH briefing notes

‘The NICE definition of GET describes increasing activity in fixed increments which is not how it is commonly implemented in current clinical practice by paediatricians.

Instead, paediatricians use an individualised approach to gradually improve physical abilities.’

 

I've tweeted at the RCPCH and RCPCH President to ask why they think it's acceptable to use a treatment without a protocol evidenced in research on children and young people.

 

Thank you Adam. Please copy in NICE NG206 Chair and vice chair..... I have... plus others....

 

Hardly merits comment (as you indicate) but if he was a genuine researcher then he'd be looking to do some sound research e.g. using actimetry to address the flaws identified in the previous studies. Oh but then the actimetry was dropped from PACE ---. Hardly worth responding to this nonsense.

 

My understanding is that this is not consistent with NICE guidelines.

The guidelines make it clear that exercise is not to be used as a way of improving physical abilities -since this implies the assumption that it is overcoming deconditioning.

 

That is why I have flagged this with you all as it was spotted by vigilant LocalME people.... some who went to Roundtable....

 

MAY BE REPOSTED

LocalME member advisory;

'I would suggest requesting a clarification rather than going immediately to challenge.

The statement does not overtly say that exercise is being viewed as a way to “improve physical abilities”.
It is that most general of terms - “an individualised approach” - that is stipulated.
This would be consistent with advising patients to do less if they were exceeding their limits, thereby increasing what the person is physically able to do overall.'

 

OK but that is not good enough. Individualised approach could mean absolutely anything. If it is designed to 'improve physical abilities' there is a claim of some therapeutic efficacy, which we do not have.

The problem is that we know that service units who are presenting their policy in this way still believe that they can make people better by increasing their activity. (Fixed interments are a red herring.)

Put differently, I see no justification for the RCPCH overlaying the NICE guidelines with this spin. The NICE guidelines are perfectly clear. If the RCPCH don't like them they need to provide some evidence, not just quote what they have been doing (while claiming to be following the old GET guideline!)

 

Absolutely, @Trish.

The therapist community need to wake up to the reality that e have no reliable evidence that their management increases the physical abilities of PWME. My understanding of the guideline is that it recognises that it is sensible to help people balance their activities, and do more if they are well enough but that has nothing to do with increasing physical abilities. The justified management is not a therapy or a treatment, it is help with coping.

 

Do you mean on Twitter? I'm not sure it's a good idea to bother Peter and Ilora with this. Their job is done.

 

The NICE definition of GET describes increasing activity in fixed increments which is not how it is commonly implemented in current clinical practice by paediatricians.

Instead, paediatricians use an individualised approach to gradually improve physical abilities.

 

It seems that PWME under these clinics should enquire as to the rational behind the offered 'therapies' and what the therapist anticipates the outcome will be. This would reveal whether or not the clinic has actually embraced the intent of the the new NICE ME/CFS guidelines or not (as per JE's post above). If it were me, I'd be asking for the response to be given in either a letter or an email, not just verbally.

 

• making flexible adjustments to their physical activity (up or down as needed) to help them gradually improve their physical abilities while staying within their energy limits

There is a crucial but subtle difference there.
I admit that I think the guideline gets muddled here but the objective here is to help people make the most of their abilities and improve them. That is conceptually different from intending to increase abilities through a programme of activity. If therapists have made that conceptual shift we have no problem. However, all the evidence I have seen so far is that a large proportion of units have not made this shift. They claim to have made the shift long ago, yet PME are still running into difficulties. You cannot have it both ays.

 

The other thing is that the guideline is saying IF the patient wants to take up an offer of an exercise programme which as far as I know is not being recommended but might be reasonable to offer to someone wanting to know how to increase their activity safely then they should be helped to achieve this in this way.

That is a very long way from saying that your main policy is individualised treatment aimed at increasing activity.