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

Just one example but I'm seeing a lot of agreement from long haulers that post-exertional symptom exacerbation is a preferable term. Even in those who are not quite aware of the context and history of PEM.

So, easy to argue this is an acknowledged improvement. Now if only they could understand there is a good possibility to make this happen and that they can influence it positively, that would be nice. As she says it's not established but there is an effort to make it happen, whether they agree with the ME/LC overlap or not.

https://twitter.com/user/status/1408713305728954371


https://twitter.com/user/status/1408717184730386434

 

https://twitter.com/user/status/1408805997179777033


glad you got this reply in @rvallee ;

the term Post exertional symptom exacerbation is quite well described in the new guidelines. my worry now is if the long covid community start using it before the guidelines are published that its specific meaning, with regards to ME patients, will get skewed.

(they've already appropriated much of the existing ME terminology)

 

Minutes for a series of four guideline committee meetings in late April have just been uploaded: https://www.nice.org.uk/guidance/indevelopment/gid-ng10091/documents

It looks as though the meetings were to consider the recommendations in light of a new 'post-exertional malaise re-analysis', alluded to in my blog post, here: https://domsalisbury.github.io/mecfs/nice-mecfs-guideline-delay/

 

Minutes for meetings 29 and 30, in which, respectively, the analysis of PEM in GET trials and the recommendations were reviewed (including for physical activity), seem rather worrying but fair:

The Chair and a senior member of the Developer’s team noted that previous interests declared meant that Luis Nacul would step out for decision-making on the research recommendations and Gabrielle Murphy and Luis Nacul would step out for decision-making on GET" (29) / "physical activity" (30)
​

Gabrielle Murphy was the chair of BACME until recently (who are pro-graded activity management). Of note, Jo Daniels, who is a proponent of CBT, had to step out for decision-making on CBT (minutes 27).

The committee seems to have reviewed the entire contents of the guideline at the last meeting (30) on 29 April. Presumably, any significant change should have been discussed by now, and the guideline should be in the process of being finalized.

ETA: Gabrielle Murphy no longer chairs BACME (thanks @Sly Saint).

 

I don't think this is worrying. This 'stepping-out' generally happens to at least one member at each meeting, due to conflicts of interest.

 

Indeed. It is interesting to see that Dr Charles Shepherd had to withdraw from all meetings (24 onwards) after his letter was published in the Guardian on March 14th.

The minutes explicitly state that the following recommendations were "amended" or "edited":

- CBT (23, 28)
- approach to delivering care, managing co-existing conditions, access to care and care for people with severe and very severe ME/CFS (28)

The following recommendations were only "discussed and reviewed":

- baseline tests, training, rest and sleep, and pain (21)
- suspecting and diagnosing ME/CFS, time to make a diagnosis of ME/CFS, indirectness in GRADE ratings, diagnostic criteria and symptoms of ME/CFS, awareness of ME/CFS (22)
- mental health and social wellbeing (23)
- dietary management, principles of care, safeguarding (24)
- energy management, physical maintenance, managing ME/CFS, information and support (25)
- investigations to carry out if ME/CFS is suspected in order to exclude other diagnoses, orthostatic intolerance (26)
- flares and relapses (27)
- PEM in GET, Lightning Process and other non-pharmacological interventions (29)

 

I had missed that. He was a co-opted member, wasn't he.

 

That's odd, not a single GET trial even had any mention or consideration of PEM, they literally don't believe in it. Should be done in a split second. I guess this is where semantics get discussed whether "boom-and-bust" is just code for PEM, which it obviously isn't, and neither is "post-exercise fatigue", if science has lower standards than the TV show Jeopardy just cancel the whole thing it's done.

 

I received an email earlier today, pointing out that the minutes noted above had been uploaded to the website.

 

The minutes do note that he was a co-opted member.

I have edited my post above with more information on the parts of the guideline that have been amended or not. PEM in GET, LP, exercise therapies and non-pharmacological interventions was "discussed and reviewed", but this does not seem to have led to changes in the recommendations -- it is not stated explicitly --.

 

I don't think we know what exactly the PEM 'issue' is i.e., what was said that prompted a reanalysis, and by who? I can't quite work out the most probable explaination. If this was BPSers, what must they have said? what are they arguing for with respect to actual changes to the evidence base? and what could be the outcome?

 

That's not quite right. The 2011 PACE paper has four mentions of "postexertional malaise", though I suspect they bandied the term around without any real insights into its implications. Would love for the full PACE data to be made available so that such things could be more deeply critiqued.

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/fulltext

 

Struggling with my memory this afternoon, but since the delay to the publication of the guidelines, haven’t White and others made claims that they had adequately addressed the PEM and GET harms issues in the unpublished data from PACE? (Can’t remember my source, but it must be either the Lancet or BMJ or newspapers stuff that has all been discussed here.) Presumably they at least had been pushing for any further analysis by NICE to include that supposed data.

Thank you @InitialConditions for all the work you have done in relation to your FOI requests relating to aspects of the NICE extended date, etc.

 

Uh, never noticed that. But those are just passing mentions hinting at a question that is not specified. And another one of the mentions calls it post-exertional fatigue, which White usually does. They have clearly no idea what it means, but I'm sure they can argue otherwise for more than a minute.

 

was this because of her public tweets about this issue?

 

It looks like it. The Register of Interests has an entry for the tweet:

Interest arose: 6 October 2020, declared October 2020. Direct non-financial.

 

I had not appreciated that Daniels had been tweeting out of line. That looks like a pretty damning admission: 'strong proponent for #CBTworks in medical conditions'. Hardly what Ilora Finlay called interested but disinterested.

Why on earth was she not down as having a competing interest right from the start?

 

I'm genuinely surprised they made something out of it at all instead of pretending it doesn't matter. I fully expected this to be overlooked entirely when she wasn't rejected for having obviously biased views to begin with. Small bit of progress.

 

Quite. If the full PACE data were available I'm sure much better insights could be gained about how meaningful - or meaningless - there claims regarding PEM really were.