NICE ME/CFS guideline - draft published for consultation - 10th November 2020

It look like this might be a victory (at long last, something to be happy for) but we also need to think how they will read the new guidelines and how they plan to adapt to essentially circumvent the rules to continue what they want to do. No “fixed” increments of exercise allowed? No problem they will say, it was never fixed anyway, etc.

if it isn’t watertight and can be abused, that’s where feedback needs to be given.

 

I am genuinely looking forward to seeing Vogt’s reaction to this. He won’t be able to stop himself from digging even deeper into his already ocean deep hole of unscientific bs.

 

I see talk of people and teams experienced in the management of ME but surely, if they have been following the guidelines, they are only experienced in incorrectly managing and 'treating' ME. Where do these people with the correct experience come from? Obviously in the future we hope that they exist but currently?

 

As mentioned, there are also many references to a management plan, therapists and therapy. This is still very biopsychosocial and make-believe treatment. The sad truth is that there is no treatment, and pacing doesn't require a management plan created in collaboration with a therapist or other such nonsense.

We don't need to replace CBT/GET with some weird form of therapist-assisted pacing for which there is even less evidence (in fact the guidelines could be attacked from this angle).

We patients don't exist to create jobs for therapists.

 

What we need is a CARE plan, not a 'management' plan. In the autism guidelines they refer to a 'Personalised Plan', which is centred around ensuring the person has the right care and support.

https://www.nice.org.uk/guidance/qs51/chapter/Quality-statement-3-Personalised-plan

 

https://twitter.com/user/status/1326101825074900992

 

Is this a misprint or an Americanism?

"the guidance will shift bit back"

 

Good spot

 

The devil is in the detail. I'm off to have a closer read - ideas about 'baseline' is, for me, often a red flag for people not getting ME.

 

Is there any mention of having consultant based care? I have a gastroenterologist for my gastroparesis. A neurologist for my spinal fluid leak, I would like a consultant for the m.e. (just like m.s. or arthritis folks have). I don't want a multi-disciplinary team made up of wishy washy therapies. If you have a consultant who specialises in m.e. they very quickly develop knowledge from seeing lots of patients with the same condition. GPs aren't suitable as your main care giver because of time constraints and lack of specialism, they will never see enough m.e. patients to develop a deep knowledge of m.e.

 

Commenting on my own comment: I hope there's some decent guidelines on structures for diagnosis, there's too much refusal to diagnose and mis diagnosis going on.

 

shift [a] bit back ? ie, shift back a bit.

 

The wording for this could have been a bit tighter.... There is potential for misinterpretation here me thinks - or am I being a tad unkind?

It is necessary from time to time for a pwME to access physiotherapy for another musculoskeletal problems that needs to be addressed and the symptoms/limitations of ME and increasing activity issues that arise taken into account in any treatment plan. Having a physio knowledgeable about ME is vital here - and when that happens it goes very well. I'm lucky that I can confidently refer ME patients to local excellent physio (private) who understands ME. And I've worked in hospital environment with physio who I think is now part of Physios for ME. On the back of this guideline they will be able to get their message far and wide. That's great news

 

#MEAction press release sent out yesterday: https://www.meaction.net/2020/11/10...could-help-long-covid-patients-press-release/

https://twitter.com/user/status/1326094401353998336


We actually just heard via a couple of journalists yesterday afternoon that NICE had put out a press release, so we rang NICE and asked for a copy and they said we could have the draft guideline too, as long as we strictly stuck to the 00:01am embargo. We very much weren't expecting this, and NICE didn't reach out to us. We got the same email to stakeholders as S4ME did this morning.

 

Stop telling people with ME to increase their exercise, new guidance says
Graded exercise therapy is currently listed on the NHS website as a 'specialist treatment' for ME and chronic fatigue syndrome
Needs a subscription to read the full article.

https://www.telegraph.co.uk/news/2020/11/10/stop-telling-people-increase-exercise-new-guidance-says/

 

Well, in a decade old BMJ podcast Sir Simon did say that in 100 years' time their current approaches might be considered "puny and pathetic."


My, how time flies.

 

Hooray, this is the first one I've seen so far which doesn't have Alistair Miller rebutting it at the end. Kudos to the Telegraph for that!

 

From the ME Association website

 

My view on CBT s laid out in my expert witness statement. There guideline has not taken my advice. There has been significant acknowledgment of the need to keep away from ME style CBT but I still see a problem.

In essence my concern is that under psychological support we immediately have CBT - for no obvious reason, since psychological support is not normally CBT. s someone asked, why not call it counselling?

I also see a confusion in the detail. Its talks about adjusting management plans for activity and sleep and so on.
That is not psychological support. It is practical advice on self-management. A good thing to have but why would it come from a psychologist with no physical expertise and in what sense is it psychological support?

I don't think I would want to make further comments to NICE on this myself, as I have nothing more to say than I said before. But others might.

 

This

i must have missed that, do you recall where can i find it? sorry if it's obvious i not well today struggling to keep up.

In general i feel still very problematic & in danger of being re-written - see on the other thread @Tom Kindlon share of Bart's comment on the draft for the previous GL. So just cos this is what the draft says doesnt mean the GL will say the same.

However I am still just so wonderfully surprised that it isnt simply a ringing endorsement of the status quo with a few nice words thrown in as a sop - which is what i was expecting. I was wrong, thank God!

Massive thanks to everyone involved so far