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

It is useful to have examples of evidence based opinion making as ininterpreted by the EBM school." I don't like the decision therefor the decision maker must have been conflicted." How exactly? What other interests were involved? Of course he might have to be careful in what he woofs.

 

Do you think that this instance of removal of junk scienc from NICE guideline will be the first domino piece to fall in a series of many others?

Maybe Garner can see the domino pieces next in line better than we do. At least that's the explanation I give myself to explain why now so many people without a background in ME/CFS are commenting on the ME/CFS guideline.

 

I think that some people responded poorly and unreasonably to Garner's January 'personal story' blog. It's now more understandable for his colleagues to interpret critical responses to his tweets as an attempt at bullying and for Garner to view his condemnation of changes at NICE, etc as a form of bravery. The response to his blog supported claims of unpleasant ME activists trying to oppress those patients sharing their experiences of recovery and hope, particularly if they seem to encourage a psychosocial understanding of ME. If you felt that you were being targeted in that way, wouldn't it make you want to fight back?

I wonder if some people were so used to challenging misrepresentations of evidence from figures with power that they failed to understand how different this situation was?

There can be a moral conflict between speaking out against problems and alienating people with power and influence. In this case, the problems with Garner's blog were so relatively trivial, and so easily misinterpreted unless very carefully explained to those not familiar with all the background, that the way some people over-reacted always seemed likely to be a problem. I don't really understand what anyone ever thought would be achieved here. We know how incestuous lots of EBM is, and how important social connections and personal experiences are. That's not going to change, and if it was thought we really needed to challenge fundamental aspects of EBM then that hugely difficult task (always likely to end in failure imo) now seems even more of a challenge.

 

From the various people showing increasingly shrill panic, I think the biggest implication here is not what this means for treatment for ME but the snowball effect this could have in EBM. Because let's be frank here EBM has revealed itself to be a completely incapable process, one that produces outcomes based mainly on who produces the evidence and what they want out of it, not what the evidence actually shows. Even with GRADE, put it in different hands and it will produce completely different outcomes. No better than a dowsing rod or a deck of Tarot cards.

Cochrane is the main edifice of EBM, it has showed itself to be remarkably inept and unwilling to acknowledge faults even based on their own rules and principles. Especially as unlike the secretive deliberations elsewhere, we have internal acknowledgment of all the flaws and how it is unsustainable to keep this alive.

I don't think any of these people care one bit what happens to us or what it means for an illness they don't recognize. If NICE actually corrects its own mistake from 2007, it exposes the entire process of EBM as fundamentally incapable. I don't think it will have this effect immediately but it will definitely snowball into a huge problem that can only grow. It will be cited as a massive failure.

So it really has nothing to do with the NICE guidance or specifically the Cochrane exercise review. The whole process of EBM is revealed as fundamentally flawed, even by the admission of the people who are the "thought leaders".

 

just waiting for MS to retweet.

In the meantime

https://twitter.com/user/status/1366062466468315141

 

Michael Sharpe has liked Paul's recent tweet (see above). I noticed from Paul's twitter profile that he's been retweeting six-month-old Henrik Vogt (Norwegian BPSer and Recovery Norge founder) tweets, in case anyone wants to connect the dots here....

 

Just for an example I thought I'd search for your response: https://www.s4me.info/threads/paul-...-me-cfs-bmj-articles.15629/page-8#post-319778

That was a pretty fair comment imo. I thought that there were bits that were probably too strong, eg asserting that "the deduction that it is changing thought processes that leads to recovery is, I have to say, nonsense" when we really do not know what was going on with Garner and without more knowledge it could be best to be more cautious in challenging his personal story. At the same time, if this was the strongest criticism made I think we'd be better off.

I doubt that many of Garner's colleagues will agree with this though: "I think Garner has, through his own words, completely destroyed any scientific credibility he may have had." What words of Garner's do you think will have completely destroyed any scientific credibility he may have had?

I'm not blaming patients for Garner's behaviour, but I do think some patients have behaved unreasonably and in a way that is likely to have influenced Garner's behaviour and that of his colleagues.

 

There is a non too subtle distinction. Patients are patients. Professionals are supposed to be "professional".

 

We've seen how professionals have behaved. It's a bad idea for anyone to assume that they're going to suddenly start being better than that imo. We've also seen how any unreasonable behaviour from patients can be used to distract from problems with the behaviour of professionals - this is also likely to continue. For advocacy efforts decisions need to be made on the basis of how things are rather than how we want them to be.

Also, with Garner he had largely been writing his blogs in his role as a patient.

 

When he was writing his blogs as a patient he generally received the sympathy to which he was entitled. When he offered his professional opinion that people should ignore a substantial part of the evidence available he received a response which he probably expected.

If professionals fall below professional standards they should be judged on that basis.

 

For what it's worth, I do agree in that there are a handful of ME patients who are not doing the community any favours. This seems to be an issue especially on Twitter. At times I have fallen into this trap, though I have never been abusive. We must tread a fine line. Be clever. They are waiting for you to be abusive.

 

But he's been clear that he's radically changed his mind, saying that he believes he got caught up in unreasonable beliefs while unwell. I don't think that undermines his scientific credibility.

Can you quote the part of his blog where he gave his professional opinion that people should ignore a substantial part of the evidence available?

 

That's true. But also, he was given that opportunity when he was still ill. He went on to complain about the institutionalised prejudice surrounding ME/CFS and the over-promotion of exercise. Then he changed his mind. IMO his blogs always mixed personal story with questionable folk science. People should have either always had a problem with that or else accepted that is what they were when his January blog came out. Personally, I thought it was always pretty clear what they were and that they should be read as something like public diary entries so didn't have much of a problem with them.

In terms of the way the stories of people who are part of a particular social group are promoted, that is a bad thing and could be part of the problem here. eg: It's quite possible that Garner felt uncomfortable challenging those he was connected to, and the system he was a part of, when he was ill. That could have increased his desire to view his own recovery in a way that fit in with the narratives of those people. I can imagine a huge relief of not having to be part of the ME/CFS rabble. Who knows, there are lots of things that could be speculated on like that, but in general I think it's fair to say that the stories framed by those from a particular class/culture/profession will tend to support the interests of that group. It's only going to be part of the problem here though imo.

 

This is an uninformed opinion and speculation but as I imagine it this whole episode with Paul Garner would have played out exactly the same regardless of anything any person with ME might have said ill considered or otherwise. All those comments were irrelevant to what was on the line for the BPS people to have PG say what he initially said.

And while they are sending out panicky messages that sound like they're responding to people in the ME community I think what might be really happening is that they have become aware of all the policy people who have gone to take a shower to clean off any muck before it sticks to them with regards to the exposure that now we all see the emperor has no clothes. And they are responding with panic to that. Or such is the hope.

 

He's made clear that he doesn't think that he was making sound scientific judgements when he was ill, and instead presents himself as saying unreasonable things unsupported by the evidence: "I started telling my friends that long covid was a metabolic disease that had damaged my mitochondria".

It may have made no difference but if the response to Garner's blog made any difference then I don't see how it can be anything but one that helped Wessely & co. Given what we've seen previously, and also since the blog was published, I suspect it has made a difference (though that is my own uninformed opinion and speculation).

 

It is understandable if we assume that these people have no real idea what being a doctor entails in terms of knowing about human relations. That may well be the case but I was asking genuinely interested to know what people thought rather than what was 'understandable'!

I am not clear what is different here?

And I am not quite sure what your comments have to do with Garner wanting to discredit NICE? Insulting people like Peter Barry seems a pretty naive way of trying to vent one's feelings. The original BPS crew seem to have gone pretty quiet. Maybe what we are seeing is a result of recruiting friends but I wonder since the friends seem to be making such a dog's breakfast of it.