BMJ: Rapid response to 'Updated NICE guidance on CFS', 2021, Jason Busse et al, Co-chair and members of the GRADE working group

Also yes please @Jonathan Edwards.

 

Sent.

 

I do find it interesting that detractors are falling out amongst themselves, as they disagree about how they should be disagreeing.

 

It seems that a lot of peoples' views are shaped by their social connections and personal loyalties. Asking Garner's well respected friends to weigh in on PACE at this point sounds unlikely to be useful to me.

 

My prejudiced view is that some of these peoples social circles/establishment friends might be avoiding publicly supporting them --- but maybe I'm wrong on that!

 

I met Wallman in Perth. This is definitely a misnomer to classify her study as GET, in my view. It's combined GET and pacing, I guess, but the ceiling is when people have symptoms, they drop back, not push through. It's trying to find if there was a marginal amount more that patients could do within their energy reserves than they thought and get more fit if they could do a bit more than they had realized. It was not designed as a way to recover from the illness.

 

That sounds greatly more sensible because it is event driven not time driven. Sensitive closed loop feedback control based on symptoms, not insensitive non-control based on misguided optimism. My wife seems to have good pacing instincts (she is mild these days), and she has always pushed herself to a degree, but learned to not over-push herself. It is one of the reasons I realised, back in 2016 once I got to understand about PACE, how daft the deconditioning theory is, because if that had been my wife's problem she would have incrementally worked her way out of it long time previous.

ETA: In fact I'd say it sounds far closer to pacing than to GET.

 

Yeah, I discussed this with her. I said I considered it a modified pacing study. She seemed to consider it a GET study modified by pacing. At that point in time, perhaps the debate and the meanings of the terms might not have been viewed the same way, especially in Australia.

 

Who exactly conducted the NICE evidence review? I mean, the committee members received the review that was done by others contracted for that project, right? Did the committee have input into which assessments were given?

 

As I understand it the evidence review was conducted by the full time professional staff at NICE who make use of a standard in house procedure. A number of these staff were present at the prior scoping meeting which several of us attended. The initial assessment was presented to the committee who then discussed issues arising with the staff, who went back and reviewed the process. Members of the permanent staff were present at the committee when I gave my testimony. The patient representatives who are members here may be able to give more accurate details on procedure although they are bound by confidentiality on matters relating to how decisions were made I guess.

 

Just looking at that Wallman trial ...

https://sci-hub.se/10.5694/j.1326-5377.2004.tb06019.x

... it says ...

[my italics/underlining]

So far as I can see the main similarity between this Graded exercise program and GET are the words "graded exercise". It's not exactly pacing, but it's a lot closer to it than GET. The notion of graded exercise encompasses a whole spectrum of possibilities.

Also in this paper, Table 4 confuses me, with n=128. Am I missing something?

 

Yeah, it's more like within your current energy levels, can you engage in modest increases in activity? I didn't view it as GET--the core element of which is that you stick to the plan no matter what.

 

Exactly.

 

She came to a talk I gave about PACE--a small group of maybe a dozen. When she introduced herself she tried to defend "GET" as not all the same. I didn't really understand what she meant until I looked at her study and saw how she was using the term GET, which was definitely not a la PACE.

 

Ok, that's what I meant. It was under the aegis of NICE operations and not the committee. I guess the argument against the evidence review would then have to be that the professional staff were unduly influenced by certain unscientific members of the committee in negatively tweaking how GRADE was applied to suit the interests of those opposed to the interventions, I guess.

 

Ellen Goudsmit, myself and others wrote a review of GET for ME/CFS. This was around the time of an upcoming Cochrane review, I vaguely recall. Ellen didn't want to submit it to a journal citing this other review as I reason. I had put a great deal of effort into it and I disagreed. In the end, it never saw the light of day. I'm in a rush this morning but I am sure that it is available in my Research Gate files, if anyone would be interested in it. I recall we viewed Wallman as pacing, not GET.

 

Makes it all the more important to define and communicate well what it is that is being done / researched.

 

I like the title.

Only able to have a quick look -- so apologies if my comments are redundant.

I forgot about that. Makes their response even more absurd.

Not important for your response @Michiel, I just wonder and don't remember now whether this was different in the previous reviews?

If the grading of the evidence had been more generous before, then it would show that Cochrane at least acknowledged the failures in the previous assessment / application of the GRADE system, brought to their attention criticism from outside of Cochrane, mostly patients' criticism.

Given that even Hilda Bastian misunderstood similar wording as if it was meant that just the use of subjective outcomes among other outcomes was criticized, I think it would be good to add here that this refers to the use of primary outcomes.

Important point.

I still think it could be misleading to say the premise is to "understand“ the intervention – I didn't explain my previous suggestion – along the lines: it's necessary to understand how the intervention is supposed to work and to impact the patients in diverse ways.

Not able to explain now, but if one already knew how an intervention works and impacts the patients, then they would not need to do a trial?

Perhaps others see and can better word what I find problematic?

Important point. Although ideally, it shouldn't discourage any sound scientist – who should be aware about the premises you explained.

 

Thanks will do so.

Would this work: "The first and foremost principle of rating quality of evidence should be to understand the specifics of what is being assessed. One has to understand the nature of the intervention and how it is supposed to impact patients.

Thanks for all the helpful suggestions @MSEsperanza