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

So, it is sounding as though there is not yet enough evidence to prevent GET being a recommended treatment.

I'm not really understanding that. Surely there has to be evidence that a treatment helps, in order for it to be recommended? And surely the PACE results, together with the subjective nature of outcomes for studies of a similar ilk, (not to mention all of the other problems) mean that there is no good evidence for GET being a useful treatment for people with ME/CFS?

I understand that the evidence for GET causing harm is anecdotal/weak. But, I would have thought, there is no need to prove harm, because why would NICE recommend a treatment that doesn't work better than a placebo?

Smart people with no axes to grind that I have discussed this with and who have taken the time to look at evidence have had no trouble agreeing that GET should not be recommended as a treatment for ME/CFS. Where are the holes in a statement that there is no good evidence that GET is a helpful treatment for ME/CFS?
 
Hutan said:
So, it is sounding as though there is not yet enough evidence to prevent GET being a recommended treatment.

I'm not really understanding that. Surely there has to be evidence that a treatment helps, in order for it to be recommended? And surely the PACE results, together with the subjective nature of outcomes for studies of a similar ilk, (not to mention all of the other problems) mean that there is no good evidence for GET being a useful treatment for people with ME/CFS?

I understand that the evidence for GET causing harm is anecdotal/weak. But, I would have thought, there is no need to prove harm, because why would NICE recommend a treatment that doesn't work better than a placebo?

Smart people with no axes to grind that I have discussed this with and who have taken the time to look at evidence have had no trouble agreeing that GET should not be recommended as a treatment for ME/CFS. Where are the holes in a statement that there is no good evidence that GET is a helpful treatment for ME/CFS?
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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.
 
From Dr Charles Shepherd’s latest ME Association blog on guidance for coronavirus:

9. The new NICE clinical guideline on ME/CFS

In my capacity as a member of the committee that is preparing the new NICE clinical guideline on ME/CFS I took part in two days of video conferencing meetings on 17 and 18 March.

However, NICE has decided to halt all further work on this guideline due to many of the clinical staff on the committee (myself included) being heavily involved with our duties in relation to coronavirus.

My personal view is that it now seems very unlikely that we will be able to meet the current target of publishing the new NICE guideline in December 2020.

NICE has also been contacted about guidance on how people with serious pre-existing health problems should be managed if they must be admitted to hospital with coronavirus infection.
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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]
 
Hutan said:
I understand that the evidence for GET causing harm is anecdotal/weak. But, I would have thought, there is no need to prove harm, because why would NICE recommend a treatment that doesn't work better than a placebo?
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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
 
Barry said:
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
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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.
 
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:
They are updated regularly as new NICE guidance is published. To view the latest
version of this NICE Pathway see:
http://pathways.nice.org.uk/pathways/chronic-fatigue-syndrome-myalgicencephalomyelitis
NICE Pathway last updated: 29 November 2019
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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?
 
Sly Saint said:
I just came across this NICE pathways:
"Chronic fatigue syndrome myalgic encephalomyelitis overview"

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&ved=2ahUKEwjfsPmar9HpAhUjQkEAHR8ZClgQFjAFegQIBhAB&url=https://pathways.nice.org.uk/pathways/chronic-fatigue-syndrome-myalgic-encephalomyelitis/chronic-fatigue-syndrome-myalgic-encephalomyelitis-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?
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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.
 
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
 
Andy said:
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
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Such good news!!
 
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