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

They do have the power to strengthen the position of people like Wessely, White, Crawley etc by swearing at them on social media, making other stupid comments, and helping them gain further support from their colleagues, or even just making some of those who may be sympathetic to our concerns feel that this is not something that they want to get involved in.

The situation that we're stuck in is exasperating. That's not a reason to make things worse for ourselves and others.

At least something good came of this.

https://twitter.com/user/status/1366828183006273538

 

I'd misunderstood this part. I wasn't saying Wessely's career was largely built on being trolled on twitter (though that narrative is of some significance to his reputation imo), but that the way he has used this narrative has effectively distracted from a lot of real problems with his work.

 

Which is what they have attempted since PACE was published, yet we continue to make progress, which you seem determined to ignore. As a reminder, NICE issued a draft guideline that specifically warns against GET. The USA has officially rejected GET. Other countries have committed to reviews and changes. The funders in the UK, recognising that there is a need for it, funded DecodeME. Cochrane are desperately trying not to withdraw their review of GET.

All of this has occurred despite a tiny minority of social media saying things that you personally don't agree with. I prefer to be proud of the progress that collectively the patient population, with the help of our allies, has achieved, and will continue to achieve in the future, rather than focusing on individual social media posts that don't actually mean a thing.

 

What has that got to do with anything @Esther12 ? Who cares if Wessely is going to be a Lord? Crawley was moved out of ME research into a non-job for politicos. These people's personal progress is not important. What matters is firstly patient care and so far we have probably achieved as much as possible, and secondly real research, where we have GWAS not organised by Crawley. We would all like to see more progress but I find it hard to see in what sense patient noises have impeded anything or strategy has failed. Life is a constant battle against the stupidity of the human race and we cannot expect that to stop any time soon.

I am not at all convinced that Wessely has a 'strong position'. Decisions being made in the NHS have little or nothing to do with him. They are a reflection of the convenience of doctors either too dim or too busy to take another route. He is a symptoms of a social problem, not its genesis. I actually think that significant progress is being made in challenging that problem.

 

I'm not ignoring that progress has been made, but considering how bad some of the problems around PACE were I still think it's worth thinking about why more progress has not been made and what tactics have been successfully used to slow/prevent progress.

I agree that random tweets from tiny accounts shouldn't matter, but they have done, and here I was asked for an example.

It would be less of a constant battle if fewer rubbish people were promoted to the top. Crawley's still steadily putting out CFS papers, gaining funding, 'teaching' other researchers, and I'm still expecting her and her ilk to have influence for years to come.

It is possible that I'm really not resigned to the constant battle. That could be foolish.

 

I don't suggest being resigned. Just get used to the rhythm and battle on!

I may be wrong but I get the impression she is just getting her name on work in her old unit. She was forced out of CMRC and I think that was an important change.

After all one of the main complaints Sharpe and co have made about patient complaints is that it drives people out of bad research.

 

But you aren't providing any analysis. You are simply holding up isolated examples of posts on social media that you don't agree with and explaining at length why they are bad. It ends up looking like you are trying to undermine patients efforts to advocate for themselves.

How have they mattered? Who have they mattered to? What progress have they impeded? What research funding has been lost? Which researchers have been lost from the field?

I'm certain that when I'm in the next DecodeME meeting with the representatives of the MRC and the NIHR, they aren't going to question me why random Twitter users said something that some people may, or may not, take offence. They won't even know about these tweets, and in the extremely remote possibility that they did, they will see them for what they are, unimportant in the grand scheme of things and not worth bothering with.

 

I suspect one of the main objectives of the BPS propaganda is to demoralize patients aware of the bad science so that they lose the will to fight back.

 

I'm not sure it's even this any more, to be honest, although I agree it may have served their purposes in the past. Now it looks more like death throes.

 

I think it's well worth bearing in mind that when the patient smearing started & the image of the threatening patient activist was created the likes of twitter & so on hadn't even been thought of yet.

One of the reasons IMO the patient smearing was so successful was because patient voices weren't heard. We were a great unknown quantity so it was a lot easier to make all sorts of assumptions & claims and get away with it.

Social media has gradually enabled more of our voices to be heard. Discussion on forums like this one show we are interested in the science. We do genuinely want to get well and engage in life. We are capable of intelligent and reasonable discussion.

If the cost of having patients be heard means that the odd person on twitter goes too far then that's a small price to pay.

If anything it highlights how unusual that is, given the number of patients there are and how surprising given the injustices we have faced.

 

Some people thought there was no problem with the response to Garner and I disagreed. We discussed it. I was asked for an example, I provided one. What analysis do you want?

That is one way of interpreting my view that it's not helpful to have patients swearing at academics on social media.

It's difficult to know exactly what importance these things have, but my impression from the people I've spoken to is that they have had an important role in slowing progress.

Have you spoken to them about the NIHR's continued funding of Crawley, the funding they gave PACE, and why it is that they've failed to properly investigate the problems here? They removed one Crawley blog on FITNET:

https://web.archive.org/web/2017021...g-what-is-right-in-a-controversial-field/5370

While another remains on-line: https://www.nihr.ac.uk/blog/worries-that-keep-you-awake-at-night/11067

I'm too old!

I agree with a lot of that, but a few years ago it seemed like when I searched then tweets criticising PACE were pretty consistently good. Now it seems like when I look on twitter there's a lot more poorly expressed anger. I understand why that would be - I'm much angrier about things than I was a few years ago. I also worry that patients' sense of powerlessness might be leading to some people feeling like they want to act 'tough' online, and that the notoriety around PACE, NICE, etc is leading to that being an outlet for people to imagine they're 'activists' when really they're just making things worse. To me it seems like this is an area where things are getting worse, even though it's already something that has clearly caused us problems in the past. I don't want to ignore that when just speaking more openly about it as a potential problem could be useful.

 

Any academic who doesn't like been sworn at, or who is unwell or feeling vulnerable, doesn't have to make provocative posts on Twitter. They could just keep quiet and get on with their job.

And yet...they don't. They quite deliberately poke the bear.

I wonder why that is?

 

@Esther12 when I look under Paul Garner’s tweets, or any other tweets responding to similarly minded people, I see vanishingly few tweets that are abusive or filled with vitriol. The vast majority make sound points, yes some of them are angry but not abusive. I would probably say less than 5%, if that. I really am not sure why you keep labouring this point. After all that these people have done to us, I would have been surprised if there weren’t a small minority of people who let their anger lead them into ranting or name calling or swearing. I can see why people are so angry.

If Sharpe and Garner (who holds up these researchers as a good example, and belittles patients) and others want to use that to further their agenda, that just shows what kind of people they are. One day in the future when a lot more is known about ME, I’m sure people will look back and be astonished as to how much patience and courtesy we even showed to these people who hurt us so much and how the mistreatment caused by the research even led to the deaths of some people with severe ME. There’s only so long they can carry on with their “we’ve been victimised, boo hoo, death threats”. One day it’ll all be shown to be a lie. I don’t think we should be focusing our worry and attention on those few ME patients who just out of genuine anger and pain, resort to swearing.

 

It's difficult to be sure, but based on a few things I suspect that Sharpe knew it was in his interest to get some stupid tweets sent to him. I think it's more likely that Garner was naive, and maybe encouraged by others to present things in a particular way. That's all a bit of a blind guess.

To me, that sound like an awful lot. I don't think things are that bad, though there can be ambiguity between criticism, anger, error, rudeness, vitriol, etc and generally the tweets in their replies seem less abusive than those sent to controversial politicians, etc - but it's still a problem imo. Also the problems around ME/CFS are often complicated and tweets seem to encourage the sort of simplifications and over-confidence that works against us, particularly when it's seen as 'patients vs professors'.

Also, I think that there's a huge difference between being angry with Sharpe over the problems with PACE, and being angry with Garner because you didn't like his personal story blog. Even ignoring concerns about the way this can cause other patients problems, particularly given Garner's place in EBM, I think that the response to his blog was often just unfair.

 

Maybe we are at cross purposes? I fully agree with you, 100%. I just don't think NICE needs nor should engage in a war of words with these people; I think silence on the part of NICE says much more than seeking to refute, what anyone with an iota of common sense can see, is a ridiculous cheap insult to NICE. Yes, they should respond to proper scientific statements, through the proper channels; but responding to cheap insults?

 

I think things are rather different in this modern social media savvy world. Smear campaigns in the past have relied heavily on the smear campaigners being able to cherry pick their examples, and massively skew the perceived balance of evidence of such "activist behaviour". I think it will be much harder to skew their story like that now, because these days people see examples all the time of such outlying behaviour on social media, and they know it does not represent the majority, and that it should not be used to pretend it does.

The smear campaigners will still try it on of course, the can't help themselves. But that is not so much the issue. It is that people are far more likely to recognise their smear campaigns for what they are.

 

No, but just as we want to be treated with some compassion and understanding as a result of our health problems and the difficulties we've faced, we should have treated him similarly. There are certainly ways in which it seems he has been in a less difficult situation than very many patients, but it's always easy to find ways to believe oneself has a particular right to being treated well compared to others, and generally it's worth trying to be kinder than seems necessary.

Garner's ill health and the fact that he was not responsible for things like the problems with PACE or anything like that is important.

He said:

There are problems with that in the context we are in, but he didn't say "don't listen to people who are still ill" or that what those who are ill say has no value. A lot of the responses to his blog seemed to be people being upset about things that he almost said. When people are sending angry tweets about their misinterpretation of something, that's much worse than angry tweets tied to an accurate criticism imo.

It could be that he believes our patient community offered nothing of value to him and only made things worse for him. He could be right. We don't know, and it's very difficult for anyone to say on the basis of one person's story. It could be that he was helped by some early advice on pacing, went on to recover, and then was desperate to distance himself from the ME mob? Maybe some advice from ME patients was useful, but then he got sucked into some of the nonsense claims some people make and an LP practitioner helped him break free. Or maybe his ongoing symptoms were never anything but a result of his anxious symptom focusing in the midst of a pandemic. We can't know and there's not much point in us trying to judge his personal story.

If it's seen as important to look at the claims Garner has made then there are some odd things in the way he now presents his story, and they can be carefully explained in boring lengthy posts (I wrote one just to show how not worth reading they are). It shouldn't be important though.

 

That is not the way 'people' work, and it's also not the way rigorous testing has suggested is a successful way of dealing with people.

It has been suggested, by someone on the BBC, so it must be right, that if you start off treating people nicely, and with respect, and then essentially reflect what you get back (so nice for nice,nasty for nasty) then you are likely to have more successful outcomes generally.

Being nice when people are being nasty does not work.

Being nasty when people are being nice also doesn't work.

It is accepted that if someone is nice, and reasonable, then it is not 'on' to be nasty or unpleasant - but if someone is doing so to you, after you have helped them, been nice etc. then all bets are off, within the bounds of 'polite' society i.e. no matter how unpleasant someone is most people wouldn't see barbequing them alive as an acceptable response.

Obviously this is a fairly recent rule, a few hundred years ago this was seen as not only acceptable but required behaviour.