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

Peter Trewhitt said:
Prof Garner tweets “Nice Guideline for CFS/ME derived from activism, not research - from a recovered patient. I have never seen such a corruption of the evidence-informed guideline process.”
Click to expand...
Prof Garner:
1. You seem to have both the name of the disease and the guideline muddled up - it's ME/CFS.

2. 'from a recovered patient'. But didn't you develop your fatiguing condition after Covid-19? The NICE guideline for Managing the Long Term Effects of Covid-19, firmly in the hands of BPS proponents, makes no mention of ME/CFS. Or even CFS/ME. They have refused to even look at any evidence related to ME/CFS. So, are you saying that they were wrong do that, and that the evidence base for ME/CFS actually is relevant to Long Covid? Otherwise, I fail to see what relevance your status as a recovered patient has to do with anything. If they are completely different conditions, you being a recovered patient of Long Covid has as much relevance as you being a recovered patient of, say, appendicitis.

3. 'corruption of the evidence-informed guideline process'. You mean corruption like ranty texts from influential people suggesting that NICE subvert their processes of careful evaluation and just write what they are told? Now that you mention it, I did see that. Luckily, NICE managed to mostly ignore such activism for the ME/CFS Guideline.
 
Hutan said:
2. 'from a recovered patient'. But didn't you develop your fatiguing condition after Covid-19? The NICE guideline for Managing the Long Term Effects of Covid-19, firmly in the hands of BPS proponents, makes no mention of ME/CFS. Or even CFS/ME. They have refused to even look at any evidence related to ME/CFS. So, are you saying that they were wrong do that, and that the evidence base for ME/CFS actually is relevant to Long Covid? Otherwise, I fail to see what relevance your status as a recovered patient has to do with anything. If they are completely different conditions, you being a recovered patient of Long Covid has as much relevance as you being a recovered patient of, say, appendicitis.
Click to expand...
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
 
Last edited:
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.’
 
Another reply to LL's opinion piece on forskning.no, this time from Sigmund Olafsen:

Hva må vi gjøre med forskningen på ME?
What do we need to do with research on ME?

Quote:
"Publication of the guidelines has been postponed several times to ensure that there were no compelling arguments against implementing them. The starting point is the best available relevant research, and the patients have been listened to.

Two offers are now explicitly discouraged, partly because there is no good research that supports them, partly because many patients report having become ill from them. This applies to both the Lightning Process and graded training, see for example the ME association's user survey .

The NICE guidelines provide a positive, and from what I have seen of data correctly, space for cognitive therapy. It does not cure ME, but it can provide a better quality of life for some patients."
 
Suffolkres said:
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.’
Click to expand...
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.
 
Last edited:
Peter Trewhitt said:
Prof Garner tweets “Nice Guideline for CFS/ME derived from activism, not research-from a recovered patient. I have never seen such a corruption of the evidence-informed guideline process.” Though what follows is my attempt at teaching my grandmother to suck eggs, I think it is worth repeating some very basic points about scientific methodology.
Click to expand...

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

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!)
 
Suffolkres said:
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
Click to expand...
I'm not sure who is being quoted here, or in what context. It makes no sense to me. If someone is exceeding their limits, the advice is to do less. But the reason for this is to prevent crashing and deterioration. It doesn't mean the person will be able to do more overall.
 
Trish said:
But the reason for this is to prevent crashing and deterioration. It doesn't mean the person will be able to do more overall.
Click to expand...

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.
 
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.

Bullet 5 1.11.13 of NICE guideline said:
If a person with ME/CFS takes up the offer of a personalised physical activity or exercise programme, agree a programme with them that involves the following and review it regularly:
[..]
  • 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
Click to expand...
 
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.
 
You must log in or register to reply here.
Back
Top Bottom