Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

I thought this was ...thought provoking. I’ve always tried to adopt an appropriate arguing style to suit an occasion ...it’s generally ended up very blunt and direct or slightly softer direct though. I think that might be my personality. I’ve always worked on that principle that articulating passionately with emotion is different to arguing with your emotions driving the point where emotions can mask or confuse the good points you are making.

Reading about tone policing in this article I would say it came across as just as bad as the gas lighting it’s trying to fight against ...if someone can effectively loose their argument by calling someone a “****” they have lost some credibility regardless of whether others told them to “tone it down”. Equally though they should be allowed to express themselves without condemnation or being effectively told to argue in a style that the other person finds acceptable. I don’t want people to think they have carte Blanche to trade insults Willy nilly because others are supposedly suppressing their views. The article falls into the trap of taking an extreme position.

I think it’s a matter of balance. A bit of passion is a good thing well used. Trading insults though ...not so much.

it seems in this case that the insults are very low on one side, high on the other (including gaslighting). And there are a variety of styles which I think is good.

I don’t think picking one historical tweet and overanalysing words to find double meanings is really relevant when you need to look at the whole content from all of the participants. The meaning of previous tweets are much clearer as the content expands. Well they are to me.

Equally, overstating one or two badly made insulting points isn’t the whole content either.

I’ve made up my mind about PG after following this discussion and I know what I would call him if I met him in a pub, but if he chose to showboat in front of others with his badly reasoned views, I would have to coldly and unemotionally put him in his place, probably upsetting people on the way with my blunt style.

horses for courses.

 

Sorry to harp on, but "folk science"? I had to look it up on Wikipedia, and it's as bad as I thought:

https://en.wikipedia.org/wiki/Folk_science

 

Is there a not missing from your first sentence?

 

Indeed. I don't remember Noel Edmonds being invited by the BMJ to tell his cancer story. Of course PG was invited because he is a doctor, and his views will carry the authority of a doctor. Whilst doctors seem to be as susceptible to quackery as everyone else, their profession gives them a platform of authority which other proponents of quackery don't have, which is why it's so annoying when they abuse their position to peddle such guff.

 

Well said, Trish. You speak for me.....

I for one am tired to continue listening to a 'Devil's Advocate' interpretation and approach by others here.

Although I concede initially in spirit of fairness, initially it may be necessary, after a while, especially after so many powerful views have added personal justification for their concerns and a medical professional perspective too, I find it has become counter productive to try to argue a case with those who seem not to be hearing or accepting an alternative view. I do find this alternative view and justification is insulting to certain forum members and professionals . Just my personal take on the matter.

 

This lays out the problem exactly. What message will his readers take from the article of they know nothing of the background. They will conclude that people with ME are still sick because they are not willing to do what they need to get better. This is the idea that has been spread about us and is why we CBT and GET are still the only treatments being offered to us despite nearly forty years of it leaving thousands devastatingly ill.

It is acceptable because the treatment works, it is only the patients who are not willing to take their medicine.

When children were being dragged from their parent's arms by the police I wondered why the parents of all the children who had recovered with the treatment did not talk to the ones who were fearful as happens with other diseases. I could only conclude that these children who recovered in locked wards with no contact with family did not exist. But now we have a learned, highly respected, medical doctor who was just as sick as us with the same disease (he claimed he fit the CCC) who followed BPS methods and made a full recovery. Vindication at last.

 

To be fair, who would believe them?

 

Yes, there should have been, thanks for pointing it out, I've now added it in.

 

I respect your opinion but I, unsurprisingly, disagree. Posts, at great length, explain why we should be accommodating towards Garner, while seeking to highlight alleged poor behaviour of a tiny minority who, as you suggest, might not even be patients. That looks very much like defending to me, lifting blame from one party and seeking to put it on another.

 

It is striking how mild much of the criticism is - you really have to go through so many fairly measured replies to find anything that might be classed as particularly aggressive toward individuals - in the case of the one cited earlier, the offending tweet talked about "the c word". It did not specify which word.
Still fairly polite!

Perhaps pointless and not constructive as a commentary, but if only all abuse looked like this.

 

https://twitter.com/user/status/1367070650918141955


Stubbs is "a clinical-academic physiotherapist with an interest in physical activity & mental health, the mind-body interface, healthy ageing and meta-research" in the department of psychological medicine at King's College (where Wessely, Chalder and Pariante are based). He works as a "NIHR clinical lecturer" at the NIHR Maudsley Biomedical Research centre that Hotopf leads.

He has been baiting ME patients on Twitter for a few months now.

This should be an interesting study to dig into if comes from the same "specialist clinic" as that in Chalder and Wessely's CBT paper from last August (discussed here: https://www.s4me.info/threads/cogni...in-the-uk-2020-adamson-wessely-chalder.16242/, and deconstructed by @dave30th & Brian Hughes: https://thesciencebit.net/2021/02/1...ck-of-control-group-the-study-wasnt-that-bad/).

 

@cassava7
It’s upsetting tbh that all these people are coming out of the woodwork. I guess it’s to be expected.

 

Rather than sophistry, I think it's helped show how what you've said there is a much fairer criticism than complaining that Garner said that we should not listen to patients who are still ill. He does imply that to aid recovery it is better to listen to patients who have recovered and not those who are still ill. There are problems with that considering i) we do not have good evidence indicating that particular approaches aid/harm recovery, and actually the evidence we have indicates that the approaches tested have little impact on recovery rate, ii) it's quite likely that within ME/CFS people may have different problems that have different rates of natural recovery, iii) those who have recovered can develop poorly supported theories to explain their recovery, just as those who are still ill can fall for poorly supported theories to explain their ill health, iv) it risks encouraging the assumption that those who are still ill with ME/CFS are lacking an insight into and understanding of their ill health, even though this view is not supported by and good evidence, v) those who are still ill can certainly develop and informed and reasonable understanding of the available evidence; and so on. At the same time, it's an idea that has some intuitive sense to people. There's a reason why attractive people can making money hawking over-priced beauty products on instagram. And given the lack on knowledge around ME/CFS we cannot know that some of those who recovered from ME/CFS did so as a result of developing a useful form of understanding of their own ill health.

I'm criticising some of the complaints about Garner that I think are unreasonable. I've also made criticisms of Garner. I've contributed a clear minority of the text in this discussion, and I'd started by arguing that it would be silly to put effort into drawing attention to Garner's personal story, which should be no more important than the stories of anyone else. I think it's been a counter-productive waste of time and energy, but if others disagree then I'm interested to find out why.

Even given how little we know about ME/CFS, are you saying you think it's impossible that anyone could fall within one of the more respectable ME/CFS criteria and then recover with assistance from positive thinking? I'm definitely not certain of that. I also think that there are lots of ways positive thinking can be harmful, and certainly the history of exaggerated and misleading claims about the power of positive thinking to aid recovery from a number of illnesses is good reason for scepticism. But I don't feel that I have anything like the knowledge needed to say that a claim of recovering with assistance from positive thinking must be false. It could be that Garner is largely right in his understanding of his ill health.

No. Or at least, not much of one beyond it being useful to them for dismissing their critics and gaining support from colleagues.

Why would you think I was saying you deserved to have Garner tweet Kelland's piece? I've said nothing like that.

It does seem that I'm viewing some of the controversy around Garner differently to many of the others here, and I'm surprised to find I have such a different perspective. To me, it looked like some of the response to Garner was almost designed to help support Kelland's work. That this was being sent to someone well connected in EBM at a time when we knew other well connected researchers would be trying to encourage the sort of narrative we've seen from Kelland to undermine progress for us, and support their own positions, was not cheering. To me it seemed an obvious move for them to be sharing links amongst their colleagues, on private lists, etc to Kelland's work, Garner's blog and some of the responses to Garner. It seems like a tactic that would help encourage support from their colleagues and that has helped them previously. Some people here then seemed genuinely shocked to see Garner share Kelland's article, and that again highlighted to me how different our perspectives were.

Just because I want to understand peoples' views here and explain my own doesn't mean that I think some stupid tweets are the most important thing going on right now. In terms of how it affects our lives, and our ability to make progress, the offence of powerful people is more important than the offence of patients though. I'm probably not someone who naturally takes offence much in my personal life. I tend to just be amused when people are rude to me, unless they have real power over me. It could be I just don't get much of the emotional response some others are having here.

I've been explaining why I think that some of the responses to his initial blog were unreasonable. Since then there have been more reasons to criticise his actions, but I also think that they now need to be understood in the context of his initial blog receiving some significant unreasonable criticism. Generally, I think that putting time and effort into criticising problems with what Garner writes as an individual is an unusually poor idea for advocacy, and unusually likely to backfire.

I don't want to offend anyone here, I just want to explain why I disagree with some of the things that they say.

I think that I probably do see the progress we've made as more fragile than some others. Also the forms of progress we've made, and those we have not, often seem to indicate that the way some of the systems that have power over our lives work is even more biased against us than I'd previously realised. Despite that progress we've made I think that I feel less optimistic for the future now than I did four years ago.

I certainly feel that another major setback would be something of a strain, and that it would be best to avoid doing things likely to backfire on us.

"The issue for me is not people expressing anger, that will and should happen. The issue is how they do it, and how the rest of the world sees it (or at least how the people with the power to make changes to our benefit see it)."

I really agree. A lot also depends on context.

I see a massive difference between expressing anger in these ways:

Expressing anger about the accurately described poor professional behaviour of a researcher.
Expressing anger about the inaccurately described poor personal behaviour of a researcher.

The main concern I have with the response to Garner is that some people were expressing anger about him having said things that were not exactly what he said, increasing the risk that others would believe that was what he said and the problems would increase. Regardless of ones views on tone, civility, etc, that's not good.

They should realise that this is just one persons story to be understood in the context of previous information indicating that most people suffering from post-viral fatigue go on to naturally recover. But it does seem that people can be unduly swayed by a personal story. If instead they take the message you're concerned about then I suspect that many of the responses to Garner will do more to entrench that view than challenge it.

I don't think that we should be accommodating towards Garner. I do think that responding to Garner's personal story blog was unlikely to be a useful form of advocacy and I am concerned that some people were making criticisms of what they felt was said, rather than what was actually said. I think that it makes sense to try to be understanding of others, and that there's particular reason to do so if we know they've had a difficult year, but that's not remotely the same as feeling we should work to fit in with what they want.

That was a tweet sent in defence of sending abusive messages after the tweeter had been swearing at Garner and another patient had asked him not to be abusive. I agree that something like that is very rare, but I think that there is more of an issue of people expressing anger directly to Garner in poorly explained ways. There were also a couple of tweeters repeatedly sending messages implying he'd been paid off - silly things like that from a tiny number of patients do feed in to a view of ME patients that is harmful to us, and people like that being around is one reason why I think it was a bad idea to draw attention to something like Garner's personal story blog.

If there are just two or three people sending lots of messages like that, that alone means that any incautious behaviour from others is more likely to cause problems and be interpreted as part of an abusive pile on.

 

Funny, though, that he doesn't say who these 'numerous v experienced ppl' are who apparently say '@NICEComms caught in a corner'.

Why on earth would NICE be caught in a corner anyway? They can take any view they want on ME, because they make the rules.

People tweeting this sort of codswallop are just in need of attention as far as I can see.

 

I think it is remarkable how few people have put their heads above the woodwork parapet. Once NICE decided there were bound to be various 'Disgruntled of Tunbridge Wells Rehab Unit' messages. All of the comments I have seen so far are from people otherwise never heard of. Busse dragged Guyatt and Garner and Floptop along to add gravitas but the only one of note is Guyatt who is presumably narked by criticism of GRADE. The teacups hosting these storms would fit on my granny's rather small teatray.

 

Right now perhaps you could summarize that and put it into a tweet? Or some other social media platform where Garner chooses to post?

I'm afraid I still think it is sophistry. Indeed by using the example of those who have recovered and equating them with a person in authority who educates such as a teacher or parent you risk causing offence.

Edit - my autocorrect went a bit peculiar and mangled the 2nd sentence in the 2nd paragraph so edited it.

 

I think that's the paper he's talking about. Saw him comment on it a few days ago, of course getting every detail wrong and cherry-picking things that the paper doesn't support. As is tradition.

 

My initial point was that this is a complicated issue and that tweets, etc about it were unlikely to be useful. I can't summarise it for a tweet and I doubt there's any value in interacting with Garner on social media about it.

I didn't equate those who've recovered with teachers or parents.