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

No, that's an assumption you've made. I haven't said that and couldn't say either way. It's probably not helpful to say things like this based on speculation, at least at this point, as it could cause a lot of worry.

What I will say is that I feel cautiously optimistic about the guideline. That doesn't mean we don't need better evidence next time around.

 

@adambeyoncelowe . Will publication now be delayed because of the pandemic?

 

Yes. We have two more meetings to finalise the draft for consultation, then there's the 6-week consultation itself, followed by one or two additional meetings to make final amendments.

 

From Dr Charles Shepherd’s latest ME Association blog on guidance for coronavirus:

https://www.meassociation.org.uk/20...-me-cfs-by-dr-charles-shepherd-30-march-2020/

 

The guideline development as a considered independent process is a separate issue to a warning about GET going out in the interim based on patient reports and concerns over the evidence base.

Afaic it’s basically down to politics and face saving And the problems of an in place GETCBT empires, why they Want to go through their process BEFORE revising anything.

If there was a food safety concern then there would be action whilst it was investigated, to be safe rather than sorry. It’s pretty obvious from Nina muirheads research that the GPs currently managing people, possibly prescribing exercise , aren’t broadly informed enough.

 

Email from NICE.

Dear Stakeholder,

Since mid-March, we have focused on supporting the health and care system with a new series of rapid COVID-19 related guidelines, and with other therapeutically-critical guidance. For more information, please visit our dedicated webpage www.nice.org.uk/covid-19

We have been actively working on other topics in the background. As the NHS and wider health and care system starts to make arrangements for the next phase of its response to the pandemic, we will plan a phased restart of publishing draft and final (non-COVID) guidelines from 1 June.

We will publish finalised guidelines as soon as possible. We will prioritise other topics according to those that will best support the system in its return to normal working.

As we restart our committees, we will take into account continuing pressures on our committee members, such as those with frontline clinical or care roles, and on our stakeholders who we need to participate in consultations.

We are conscious that the COVID-19 situation is changing all the time and will continue to review our plans and update our stakeholders accordingly.

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.

Kind regards

Jon Littler, Guideline Coordinator, NICE Centre for Guidlines [sic]

 

Yay! I’m so happy it’s re starting! Please let us know when you get more information.

 

I think it is also valid to argue the evidence that GET does not cause harm is also weak. PACE was set up to not detect one of the most common modes of harm.

PACE especially, trialled GET and CBT-a-la-GET on a presumed physical dysfunction of deconditioning for ME/CFS; now thoroughly debunked. Consequently the PACE protocol and design was never set up to recognise or record the most common mode of harm that pwME experience - progressive deterioration of symptoms due to GET etc. So there is a valid argument that a key reason for lack of evidence of harms, is that PACE and other trials have a huge flaw in them (yes I know there are bucket loads of them, but I'm just on about this particular one at the moment!) - they were actively misattributing evidence of the harms patients report, because such harms were not deemed possible from being deconditioned.

I really do think we should maybe pursue this, because absence of evidence does not mean the evidence was not there, but more likely that it was misinterpreted as just something that had to be pushed through in order to recondition (!!!). Pretty sure a PACE participant spoke of this some time back, saying their heart rate symptoms were not believed, and the trial staff wanted to not report it, assuming it to be equipment malfunction or something.

Two of my other posts on this:

https://www.s4me.info/threads/my-comments-to-the-cochrane-review.15154/#post-261200

https://www.s4me.info/threads/my-comments-to-the-cochrane-review.15154/#post-261255

 

Not only did PACE not adequately define and record harms but many CFS clinics don't either under the assumption that their treatments can't harm. This flaw has been propagated through the health care system, despite the overwhelming evidence from multiple patient surveys by AfME, the MEA & the one specifically carried out for the guideline review.

 

[my bold]

This! 'Propagated' is the word, sourced primarily by PACE and the BPS ideology.

 

I just came across this NICE pathways:
"Chronic fatigue syndrome myalgic encephalomyelitis overview"

https://www.google.com/url?sa=t&rct...overview.pdf&usg=AOvVaw28rQaZlrpLlck1LjotP5rD

c. 2020

the first link:

doesn't work.

in fact most of the links don't appear to work.

why was this produced given that the revision of the guidelines was well underway?

 

I can't be sure but I think something like this came up some while back. That there was some updating to some documentation going on, and that it was not specific to ME/CFS but it was included along the way. Just rings a faint bell.

 

Talk of Pathways here, HealthPathways, RACP & NICE guidelines - how do they fit together?

 

This is what I was thinking about:

https://www.s4me.info/threads/nice-pathways-flow-charts-for-cfs-me.9749/#post-172488

 

Further email from NICE.

Dear Stakeholder,

As you will be aware, because of the need to prioritise work on COVID-19 guidance and to avoid drawing frontline staff away from their clinical work, NICE cancelled all guideline committee meetings. This included meetings for the ME/CFS guideline. We have now rescheduled the remaining committee meetings for this guideline and agreed a revised timeline. This means that the consultation on the draft guideline will now start on 10 November, and the guideline will now publish on 21 April 2021.

Kind regards,

Katie Stafford, Senior Guideline Coordinator

 

Such good news!!

 

Does this mean the draft guideline will be actually published in November for everyone to see, or will they only send the draft guidelines to stakeholders (ie we won’t get to see it) at that time?

 

It's a public draft. Everyone will see it.