NICE announces next steps in updating its guideline on ME/CFS

This will also have an impact in the United States. Healthwise, a major medical content provider which continues to recommend GET and CBT, has stated they are watching NICE guidelines closely.

Healthwise apparently considers NICE just as authoritative as the CDC.

 

These days, @Webdog , with the rate of flu deaths for kids at an all time high, and increasing coverage of the Lyme debacle grabbing the spotlight, CDC repute may be not something NICE wants to hang its hat on.

 

"Additionally, we will include a lay member on the recruitment panel for the chair of the guideline committee.”

I wonder how one applies for that. I thought that they were already underway with that process anyway? Weren't applications for the chair due in at the end of January?

 

Not too much inclusion, obviously Presumably the lay member will be issued a nice rubber stamp along with their seat at the grown-up table.

 

I "think" I read somewhere that the Lay members are a people who have applied to be on the Lay team (or something like that). They are not specific to anyone guideline or purpose, but can be asked to act as Lay participants when and where required. So maybe the post on this panel was advertised amongst that group and not openly.

Perhaps we missed a trick not having people apply to be Lay people for NICE. Hmmmmmm..... wonder what the background of that Lay person is?

 

NICE need to take responsibility for their part in the unhelpful framing of this illness. The direct consequence has been lack of research interest which ironically Mark Baker has said is a tragedy.This ofcourse has been the vicious circle - no research , no robust single evidence for disease or medical treatment - guidelines and centres focus on broad umbrellas and behaviour intervention - medicine doesn't take it seriously - no research.

Give an illness an naf name, loose the serious ME in a fatigue plus one criteria and claim most mild - moderate will be helped by behavioural intervention and guess what serious researchers stick with respected diseases. It's why I liked SEID & the IOM report , it enabled a break from the perpetual debate to a fresh start, to talk about a more specifically defined, more seriously taken illness. I'm just not sure UK will let go of a vague CFS or recognise ME - then what we might get is just a vaguely improved guideline that just waters down the CBT/GET , adds in a tilt test and a few other bits and otherwise it's the same. It will reduce harm to the newly ill but will it change the way ME is cared for, respected and researched?

In terms of a treatment section if we get rid of fatigue disorders and have a section on basic management of the rest, I'd like there to be a glaring lack of them so that Drs can see the stark truth. That doesn't mean the newly ill are faving despair, because well managed and early diagnosed they have good chances for a reasonable life, the rest of us need action though, and the hype over CBT and rehabilitation - a nd the severe are under rehabilitation pressure - is masking the reality.

 

Apologies for lack of clarity. I didn't mean to suggest any relationship between NICE and the CDC.

What I intended to say is that Healthwise itself considers NICE and the CDC top level authoritative sources for its own ME/CFS treatment recommendations. Changes to NICE guidelines could affect Healthwise's ME/CFS treatment recommendations.

 

And the hugely helpful answer is

 

Such a shame that even the "repliers" to emails, presumably a low pay grade, have learnt the art of answering a question that wasn't asked.

 

Exactly that. Perhaps not a sensible thing to do but I sent a further reply,

as I am still unclear as to whether he has confirmed the 25th as the correct date or not.

 

This is the law of bureaucracy, which is the same as a rendering plant: what matters is the process, the people being processed are of mere feedstock.

 

There's a list of the steps taking in a review at https://www.nice.org.uk/about/what-...ice-guidelines/how-we-develop-nice-guidelines

So it sounds like we're done with Step 1 (Topic Chosen) and this is what it says regarding Scope:

More details of establishing the scope are at https://www.nice.org.uk/process/pmg20/chapter/the-scope

Stage 3 of the scope may be most relevant in establishing that this is about ME/CFS, not CF:

But NICE is generally handling all of this internally, up until Stage 5:

So from what I understand, the previous meeting of stakeholders was an optional preliminary meeting used to help them determine the scope before they draft it. Then their drafting of the scope will be reviewed by stakeholders to make sure we're all on the same page, and that they are understanding what patients and other stakeholders are wanting out of this.

It'll be interesting to see if their draft of the scope really does reflect patient concerns, or if they're trying limit the scope to retain most of the old guideline. After the May 25 meeting with stakeholders about the scope draft, they'll come up with a final scope statement. Then we get a month to comment on the scope from June 21st to July 19th, to let them know what we like and what needs to be changed. This is especially important since the evidence review will be determined by the scope to a large extent.

The Committee of practitioners and patients/carers won't come into play until later typically, during the evidence review. Though it sounds like sometimes the chair and few members can be recruited earlier to provide guidance to NICE's people.

 

It sounds like the next meeting of minds will likely be the Scoping Workshop then.

 

Finally got a further response.

So it would seem that it is more important to them to have their website updated than it is to keep the stakeholders informed. Is it just me or is that the reverse of what it should actually be?