NICE ME/CFS draft guideline - publication dates and delays 2020

https://www.nice.org.uk/guidance/indevelopment/gid-ng10091

 

So, another year of PwME likely to be harmed by current approaches and the ongoing stigma and disbelief.

 

And right in to the busy pre-Christmas period when any complaints/criticisms will go unheard.

 

Not even advice or a warning on GET/CBT that they are under review. Sometimes warnings or cautions are placed on drugs, but not it seems on psychobabble.

 

Technically, the most recent extension was only 3 months.
And in principle, the new guidance draft could be great and available in summer.
But yes.
However.
There is a considerably greater body of evidence now, than there was when the last decision (to update the guidance) was made. So that's something.
Thinking of stuff like the tracking treatment harms paper, and piles more biomedical.

 

I meant a year from now. (sorry if not clear)

Still no signs of any warnings about harms, or letters to clinics saying there should be agreement between patients (or parents if it is a child) about any "treatments" to be undertaken, as per current GDL.

 

This is not acceptable while harmful misleading guidelines stand. Getting things right is fine and proper but not while recommendations that are unfit for purpose remain in effect during that time. The pace was already ridiculously generous, it frankly points to mismanagement to have to extend. The reasons given could be somewhat acceptable but we have to take their word for it without any facts. NICE has rather shown to be mismanaging the whole thing so without transparency, yet again, this reeks of politics.

Retract the current guidelines and extend or don't extend and do your damn jobs. In fact, just retract, it's been made clear that they are unfit for purpose. As is typical it is the patients who are getting harmed and the very organization responsible for this harmful advice extending its own failure is morally bankrupt.

The NICE-commissioned survey showing that the current guidelines are harmful to over half of patients is already months in the past. This means NICE is aware, even more so than usual anyway, that their own recommendations have been and are still harmful and choose to extend the process. Typical malpractice.

NICE even appears to be doing something similar on other BPS guidelines. They have guidelines of CBT for psychosis and schizophrenia, for which the evidence has also been dismantled as being ineffective and misleading, that have stood since 2008 and should have been updated last year. Did not happen. There is a very real problem with NICE carrying water for CBT and the BPS ideology, all to feed the IAPT monster.

https://twitter.com/user/status/1201966374089822210

 

December 9, 2020, can easily be rolled along well into 2021.

 

I'm still not expecting much of an improvement... which would be worse than nothing. This means I'm in no great rush. I think that they gave themselves too little time to get this right, with a committee that includes too many happy to get it wrong. If a delay means that the guidelines will be less harmful, that's the main thing (I've no idea if that is what this means).

 

Just to give an update: I don't think this is supposed to bury the guideline (it'll still have a 6-week consultation period and people will see a draft as usual). I think it's just generally due to the sheer amount of evidence.

We're currently doing double day meetings to fit it all in, and we've had about three drafts of the pharma and non-pharma evidence reviews (over 900 pages for each draft!). There are summaries for everything too, but I think everyone wants to be super-thorough with this.

 

Ironic considering the 2007 guidelines were rubber-stamped in 2017 because "no new evidence had come about" or something like that. Two mutually exclusive truths at the same time. Splendid.

This move would be more meaningful if the current guidelines at least had a stamp of warning that major changes are being processed, at a minimum. But it's their show and at least we know you are holding them to it, thanks for the update.

BTW are you gagged from commenting on substance only during the proceedings or does that apply forever?

 

Only during the proceedings, I assume.

I'll add that the 900 pages include pre-2007 studies too, but also that the decision not to update was recommended by the *old* guideline committee group, not NICE, specifically.

 

Gawd. That explains a lot!

 

Am hugely appreciative of all the hard work our representatives are doing.

But i'm afraid i'm with @Esther12 - i'm not expecting much of an improvement, in fact despite all the efforts of those on our side, i'm still expecting them to pretty much rubber stamp the old recommendations but with slightly different language. That will be so much worse than the current situation, so i'm in no hurry either.

I will be overjoyed to be wrong.

 

#MEAction
Another No from NICE – Take ME Seriously

https://www.meaction.net/2020/02/05...eriously/?mc_cid=9472762749&mc_eid=c1fdea04b1

__________________________

Moderator note:
For discussion of this action, go to this thread:
#MEAction UK: "Take ME Seriously" project needs comments & signatures to send to NICE

 

From an email received today from NICE

Dear Stakeholder,

We wanted to update you on how NICE is working to support the NHS and wider health and care sector at this challenging time, and to provide more details on how the COVID-19 pandemic is affecting our normal ways of working.

During this period of emergency, NICE has adapted its priorities to support the NHS, local authorities and the wider health and social care sector to tackle COVID-19. We will only publish guidance that is therapeutically critical or focused on COVID-19-related issues.

The stakeholders and advisory committees involved in the development of our guidelines include a large number of frontline staff. We know that their priority in this crisis is caring for patients. We do not want to draw them away from this vital work.

For this reason, we have cancelled all guideline committee meetings and we will not be publishing any draft or final guidelines until further notice (except for COVID-19 rapid guidelines – see below).

At present we are not able to confirm the revised timelines for each guideline. We will be in touch to provide further information as soon as possible. For more information in the meantime, please visit our dedicated webpage https://www.nice.org.uk/covid-19


COVID-19 rapid guidelines
We are working closely with NHS England and NHS Improvement to develop rapid guidelines on topics relevant to the management of COVID-19. These will be published weekly and will focus on a range of clinical settings.

In addition, we are producing rapid evidence reviews on medicines used to manage COVID-19 and its symptoms.

All of our COVID-19 guidelines and evidence reviews will be published on the NICE website. Enquiries about this work should be sent to nice@nice.org.uk​

So it looks very possible that the ME/CFS guidelines will be delayed.

 

Making the indefensible decision to keep clearly misleading and harmful guidelines in effect all that much more reckless and irresponsible. It's beyond clear that they are kept for a mix of ideological reasons and political CYA, not because they have any value or conclusive evidence.

Expected. Disappointing, but sadly expected. Playing with lives as if we're lego figurines. Disgusting.

 

I don’t know in terms of M.E and conference calling etc how essential this was. I mean it’s pretty devastating given how much on hold everything has been because of waiting for NICE to change things, the RCGP guidelines, just generally forcing the UK to put in place a new approach and send out a strong signal that this is a serious physical illness without much benefit from rehab

it might well be fair enough but I think that our Community have to try to move things forward where we can, especially regarding education, awareness, maybe sending drs & physios professional looking info on M.E (when Cvd is over) to encourage research interest, targeting media to get coverage, instead of just waiting, because if this is set back 4 months or more that brings review to now May - July 2021. Tick tock.

 

It’s very disappointing but understandable.

However, what is stopping NICE making the decision to at the very least get rid of the graded exercise therapy and CBT recommendations from the guidelines?

They know it’s horrendously harmful and is leading to long term damage. And there’s no evidence for it to remain on the guidelines. We all know if it was a pill it would’ve been withdrawn. People may well be told to do GET over the phone or email like I was. It also affects ME people’s care in other ways. Why hasn’t it been removed, still?