Feedback from Stakeholder Engagement Workshop for the NICE guidelines on ME, Jan 2018

Very interested in this topic of "OI in PwME" (from recent experience) but will take it away to another thread in Symptoms....... somehow .......may need techie help.......please?!

Edit - ohhh, managing the tech stuff, slowly......

 

Rigorous evidence that they don't work, or that they cause harm, or both? (Apologies if this has already been asked/answered)

 

Great to see that at least one table raised HR pacing. It is also necessary to get food/chemical/environmental intolerances into the guidelines and the ease of identifying them with HR monitoring - these are a nightmare especially for anyone needing care outside the home and/or medical/dental work done. Sleep- hopefully the unique sleep issues ie under sleeping or too much exertion = tired and wired. Only using the bed for sleep doesn't work when you live in bed. Rest = a set range within resting HR (nominally 110%) - surely there is some research somewhere on this? If not can some be done quickly?

 

This would be helpful. Welcome to the S4ME

 

ME Research UK's feedback

Quote above looks to be their opinion on the meeting, the rest seems to explain the processes involved http://www.meresearch.org.uk/news/nice-guideline-review-stakeholder-workshop-jan-2018/

 

“First, do no harm” from an ethical standpoint and acknowledging the exercise intolerance (SEID) that the IOM included in it's 2015 report. Removing criteria such as the Oxford criteria as the NIH Statement is unambiguous that the Oxford criteria are flawed and lack reliability, thereby confounding the ability to interpret results drawn from studies which used them to select cohorts and noting that use of the Oxford criteria may impair progress and cause harm, therefore no research using them can be considered rigorous or valid for the patients the guidelines are written for.
Service provision for the severe and very severe that cannot attend clinics or partake of the currently issued advice that fails roughly 25% of the patient community is another elephant in the room.

 

Nice .

Inevitably. This is just the beginning, but a very important beginning by the sound of it.

 

Given that the clinics and the currently issued advice is harmful doesn't it fail 100% of pwME?

 

The UK Biobank have put out a brief statement

 

Probably... but I suspect it will be hard to get widespread excitement for a campaign like that, particularly in the face of other people promoting questionable but exciting 'science', and the prospect of rapid access to effective treatments.

I agree with Edwards & co that there's a real conflict between anyone 1) wanting to remove CBT/GET because there's no good evidence that they're useful and 2) wanting to insert some speculative treatment with no good evidence of efficacy.

If people do start trying to promote unfounded treatments, it gives Wessely/Sharpe/etc something to exploit.

 

I take your point but I think there could be a 'Tell us honestly there's nothing' when it comes to RCT-backed therapies.

 

I think one of the major failures of the system is that adverse reactions are not identified, reported, tracked, investigated, nor results published; be it normal doctor/patient interactions, trials, whatever. It's disgusting. In the aircraft industry, which has parallel safety responsibilities, an operator is legally bound to report any serious incident. The AAIB (Air Accident Investigation Board, which also covers serious incidents a.k.a. near misses) may then investigate that incident. If we had the equivalent in the medical world, people would be much better protected, and science might acquire crucial data currently denied them. It's probably why civil air transport is so safe, and I'm sure much more so than PwME at the hands of the medical experts.

 

Agree @Barry Also I think it is a concern that there is a yellow card system for pharmaceuticals, but not for psychological/psychiatric therapies. So how can GPs and patients officially report problems with GET/CBT?

 

Sorry, I was meaning insisting on no recommendation without rigorous evidence for efficacy (which we are without).

 

I think that one got through to the facilitators and I think we can be optimistic it will be allowed through on new guidelines - an emphasis on regular checks to ensure something important is not being missed.

 

I'm hopeful we'll end up getting much improved guidelines, but I think we have to be cautious and remember the past to be sure we do get these improved guidelines and not be taken in with NICE nice speak.

The MERUK report mentions how there will be patients advocates and all these noble things NICE sets out to do with their guidelines and the whole process, blah blah.

These were all in place in 2007 and it made not a jot of difference, they steam rolled their way through the whole process making sure their agenda was fulfilled.

So real hope but caution.

 

Never knew about this. So we can report adverse incidents regarding all kinds of medicines and medical devices, yet no mechanism whatsoever for reporting adverse incidents form psychiatric interventions? I would have thought there should be a reporting mechanism for all kinds of medical interventions, be they psychiatric, physiotherapy, whatever. To me that seems barmy. You did say you were looking forward to getting stuck in @Carolyn Wilshire ( ), so can ask for your thoughts on this?

 

Absolutely. I tend to worry about this one re my wife.

 

Yellow card: https://yellowcard.mhra.gov.uk/the-yellow-card-scheme/
I "think" this implies that therapies are not part of the yellow card scheme.
@Barry (Does this maybe need a new thread?)

 

Yes, that's what I understand ... my post maybe was a bit confusing. Yes, I agree. As we sort issues out here ( ) maybe that could be an area to focus on.