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

Interestingly we are hearing lots of descriptions of GET which actually isn't GET at all but is pacing - it may explain why some people are saying that GET works because they aren't actually doing the purist form of GET!

 

Yes, I think many people just presume it to be a generalised description of a pretty vaguely defined form of therapy involving exercise, and then also assume that GET is just a shorthand way of referring to it. From that they then come up with their own variant of exercise therapy, and just colloquially refer to is as GET. Which then runs the risk of giving true GET way more street cred than it deserves (i.e. zero).

When trials seek to reproduce results of other trials, it is presumably pretty simple to identify if the treatment being tested is the same as in other trials, if the treatment is medicinal. The medication and its dosing simple to reproduce presumably. But for other therapies it can be far from obvious, yet scarily easy to presume the treatments to be the same. This is a really fundamental sanity check that should be done when designing any trial attempting reproducibility. I mean, what is the point of seeking to reproduce the results of a trial that tested the health benefits of eating apples, if in your reproducibility trial you test the health benefits of eating pears!

And by the same token, one of the first sanity checks that any systematic review should do when assessing trials, is to ascertain whether any of them fell into this trap, and failed to actually test what the authors asserted they were testing. And that means the reviewers really do need to know their stuff, and not fall into the same trap everyone else has along the way.

It is fundamental to any testing that the test specifications are right in the first place! Suppose someone writes up a flawed test specification for a repaired bicycle wheel, stating that when you turn the wheel the rim must not run out of true by more than 1.0 cm, when in fact the rim is supposed to stay within 1 mm. The wheel could be seriously damaged, but still pass the test because the test is wrong. Although my example here is blatant, it is actually a very easy trap to fall into in many cases if not careful.

I find it mind boggling that such elementary mistakes seem to be happening. I thought engineering had its share of such problems, but some areas of medicine seem to have a hell of a lot to learn.

 

Indeed! OTs I've worked with have explained pacing to me in various ways, but all could be summarised fairly as 'removing activities'. There seemed to be a recognition that people with ME need encouragement to add activities like Labradors need encouragement to eat.

 

Because the only NICE recommended approaches were GET and CBT, these were generally the only ones that would be funded by CCGs, therefore any clinicians who realised that GET or directive CBT didn't work still had to use those terms.

 

There are books with chapters on what GET is written by the people who started it all.

https://www.qmul.ac.uk/wolfson/media/wolfson/current-projects/6.get-participant-manual.pdf

 

Especially if as a new patient you are inevitably naive about all these things, and assume the professional would never guide you wrong.

 

One of the issues I am beginning to see with GRADE is the idea of a graded recommendation to be dispensed to GPs. That seems inconsistent with the policy that doctors and patients should make shared informed decisions. Basically, GRADE should aim to identify the arguments in favour of using a treatment and the arguments against. Those should be crystallised in such a way that GPs can present the arguments to the patient and they can decide the strength of the evidence. If the patient wants the GP to advise r'recommend' then the GP should be in a position to explain why they do so strongly or weakly, not just say 'oh well people using GRADE come out with a medium recommendation, although goodness knows why'.

 

This.
I don't think.people realise how difficult it us to not do things.

For children especially , the urge to regain abilities can be acute.
Schools push and try and ramp up, friendships are strained when promises are broken: the deliciousness of a good day, and the accompanying adrenaline rush are so dangerous .

It's a hard lesson that's learned, made harder by official guidance.

 

Unfortunately the GRADE handbook does not explicitly suggest that clinicians should know (the quality of) the evidence behind a graded recommendation in order to give their patients an informed explanation. For weak recommendations but not for strong ones, it merely gives a wording that could be interpreted as such:

 

That seems to be waffle and the strong recommendation advise looks pretty close to coercion.
I wonder who these GRADE people think they are to give this advice?

 

But, but, there is more than one problematic part of that sentence!

 

They have evidence that doctors like their advice:

From:
Ignacio Neumann, Holger J. Schünemann (2020), Guideline groups should make recommendations even if the evidence is considered insufficient
CMAJ Jan 2020, 192 (2) E23-E24; DOI: 10.1503/cmaj.19014, https://www.cmaj.ca/content/192/2/E23

 

Because clear practice recommendations are highly valued by clinicians and may prevent the use of unproven interventions, we believe that guideline panellists should always endeavour to make recommendations in the context of uncertainty.

Yes, this is parentalism, which I have discovered is the way to say paternalism without being sexist and without using maternalism either.

But there is some confusion here. I had raised the point that grading recommendations looked suspect. I am not against a guideline panel giving their opinion in terms of yes or no. But that should be accompanied by a resumé of the reasons. That resumé may make it clear that the case is strong or weak but nothing needs to be graded. Grading is a pseudo-concept here. And grading is all that GRADE is really about beyond making rational decisions after careful consideration evidence, which is obviously what should be done anyway.

Grading gets you into the business of 'you've got to have it to make you healthy' or 'I'm not going to offer it because we are skint and I don't think you deserve it'.

 

Mind you there are certain forms of finger lifting, involving two at a time.....which may be quite appropriate for patients to use!

 

Then you could progress to raising just one eyebrow at a time. Takes a lot more concentration and practice. I never got beyond one eyebrow, but my husband can alternate.