NICE ME/CFS guideline - draft published for consultation - 10th November 2020

I am going through trying to catch up, but if this is glaringly obvious @Esther12 I am wondering if you have lost touch with what is going on! He is supposed to be an expert on evidence. He tweets pseudoscience and unprofessional interpretations.

 

This

 

And this.

 

Given what we've seen, is that a reasonable assumption?

From his blog (and subsequent tweets) it seemed that he may have been sympathetic to the Recovery Norway narrative of ME activists harming peoples' health by insisting on only 'biological' explanations for symptoms and not listening enough to those who've recovered. Then his blog about his personal recovery story received unfair criticism. It wouldn't at all surprise me if he now assumes the worst of ME patient advocacy efforts, and believes claims that this is distorting 'science' in a way that would deprive people like himself of the sort of positive information about exercise and recovery that he needed to recover. He may be sympathetic to people like Barry, but think that they're under enormous pressure from unreasonable patients and that NICE have buckled. In that case, the forces of 'EBM' would need to be roused to stand up for good medical practice or risk dooming patients to medical practice shaped by unreasonable views. I think that the response to his blog was likely to encourage him viewing things in these sorts of simplistic and ideological terms, and to have encouraged others he knows to support his efforts.

 

Lets' be fair. Paul Garner, together with his friends at GRADE have impugned the integrity of Peter Barry, Ilora Finlay and myself amongst others in a way that is simply not acceptable in a profession like medicine unless you have some arguments. Busse et al. raise not a single argument because they don't have any. They have made complete fools of themselves and can expect to have that made very apparent. I may be a little unusual but I am not the only medical professional with a bit of common sense. Garner and the GRADE people have blown their cover.

This to me looks like the Proud Boys storming the Capitol. OK make believe on social media will continue but if we are to get anywhere we have to go with something that makes some sort of sense.

 

It is in plain sight.

 

Oh come on @Esther12, you are suggesting that he has so little respect for Barry that he thinks he has 'bowed to enormous pressure'? Peter Barry is a tough cookie. I learnt that straight away. To underestimate someone like Barry is not very clever.

It is not very hard to see the reality of what is going on here. My wife, as a casual observer is in fits of laughter over Garner's behaviour. Just as one might be over the man with the horns in the Capitol. We are watching people who think they are entitled to say what is true being told that they may not be right. Human nature is quite simple but it is remarkable how many people, especially professionals trained in human nature, fail to see it.

 

Strange you should say that. I came across a paper by George Torrance who seems to have set up the department at McMaster from which the GRADE system would seem to have emanated. My reaction was that that was not someone I would want anywhere near my medical care. On the other hand, were I the finance director of some health board his opinion might be sought.

 

NICE has made summaries of qualitative research (such as studies that performed interviews to see how they experience GET etc.). It also commissioned surveys on experiences on GET/CBT, experiences of children with ME/CFS and patients with severe ME/CFS - I suspect that's what he is referring to.

So when he accuses authors of being conflicted perhaps he doesn't mean the NICE committee itself but the authors who performed these surveys.

 

If that's not acceptable then what sort of response to this RR do you think that there will be? We've seen people behave much worse than this without problem.

I doubt that we'll see a radical reversal from NICE at this point but I fear it's now going to be even more difficult to make progress beyond that rather clunky compromise, and that many of the people responsible for the worst problems we've seen are in more secure and influential positions than ever. This risks causing problems in future decades. It has become pretty clear that medicine is often shaped more by the interests and personal connections of those with power, particularly when there is little clear cut evidence to go on, as with ME.

 

Yes, I had assumed he was referring to the studies of interviews etc but in what sense was this 'synthesised'. What does that mean? It was commented on but the decisions on guidelines as I see it are based on the formal trial evidence.

And yes, the comment about conflict refers to the authors of the qualitative studies. But how does he arrive at that? He seems to think that the absence of some sort of statement is what matters. I do not see what conflict there is in reporting that lots of people say they got worse if you are worried about people's wellbeing. This is the myth about conflict of interest by patients. There is only a conflict of interest if you are a malingerer. So is he accusing the authors of being malingerers? It seems probably he is. The level of gratuitous rudeness is unbelievable (or would be if one was ne to this field).

 

I am not a quitter @Esther12, even if others may be. When things get tough, as they do when you get close to winning (something by Ghandi?) you push through. The RR by Busse et al. is a completely new level of unprofessionalal rudeness to colleagues. I cannot think of any previous situation where one lot of quality police has said another lot have produce something disastrously bad. If this is the future of society then maybe it's just as well that I am over the hill but I have a bit more go in me for the time being.

However much what we have seen is like before this sort of rudeness to colleagues seems to me quite new and a sign of a defensiveness from which there is no clear route out.

 

I don't think it's possible to make progress without upsetting anyone. ME/CFS being moved out of the influence of CBT/GET therapists, mental health sections, psychiatry departments, certain Cochrane authors and so on is going to upset people who view it as theirs or who are tied in some way to the same flawd research methods. In my opinion the chance that any of them would admit that they tried and failed is zero. PACE and derivate work clearly shows that there is an inability to admit null results.

 

I would really like to win and then quit!

 

Yes, quite apart from anything else, Barry would surely know that NICE decisions based on anything other than evidence quality, would be so readily exposable these days.

 

what was this?

 

I don't see it in terms of winning. I see it in terms of achieving the best result possible at the time. I think NICE will be close to that. It may loo a bit messy but if all physios and psychotherapists had to pack their bags and go home the justification for any ME/CFS service would collapse. That might be for the best but my guess is that it would be very hard to get things going again or provide support on the side where it exists.

I am confident that NICE will not move substantially on the draft. The next battle will be when people start appealing. But they are doing a great job of making themselves look incompetent in advance. It now seems that GRADE works however the people using it fancy to work it. And if you read GRADE you can see why. You can only go on selling a dud product for a certain time.

 

Appealing to whom? There is no formal appeal after the final NICE guidance is issued, is there?

 

Of course it's possible to be excessively aggressive on social media, and it is possible to over-interpret most things on social media as well. The CBT/GET folks are losing their grip on the situation and are scrambling to do whatever they can to hold on to their domain. Of course they'll jump on offensive tweets or whatever, but they will jump on inoffensive ones as well and continue making their bogus arguments no matter what any patients tweet.

There have been many tough but cogent responses to the recent BMJ blogs, Garner's included. For the most part, the responses have seemed entirely appropriate. While the CBT/GET folks will rally round each other, I assume there are also neutral observers reading these cogent responses. To focus on some off-color tweets as the problem or as anything other than some off-color tweets seems off-point to me.

Of course Garner was writing personal posts. And of course his role as a key evidence-based decision-maker writing his personal posts in a high-profile venue for clinicians endowed his posts with more perceived authority than patients writing what they think in social media. In his last post, he blurred that line in a way that smart editors should have prevented. Since they didn't, it seems entirely appropriate to call him out. If that further induces him to make unwarranted claims, it is not inappropriate to counter those as well. Whether it matters in the end is another question. But patients are not at fault here in responding in strong terms.

 

Perhaps his new persona involves mimicking a ventriloquist's dummy, or a puppet like Punch?... "That's the way to do it..."