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

Cheesy though it may sound, I'm genuinely proud to know you on S4ME exactly because of that, and how you put it into practice for pwME. I'm sure I'm not alone in this.

Exactly! Those who spin it out of proportion and context, primarily do so to cover for their own failings and inadequacies. And in doing so, their behaviour is far more abusive in its way, but less obvious to many.

 

They don't really have a right to be abusive, but any sane and compassionate person would have an understanding of why it might be happening ... unless they are scientists so far up their own behinds they cannot see beyond the muck of their own making!

A real scientist is supposed, above all, to view things objectively. Any objective observer would see, that focussing only on the occasional abusive comment in order denigrate all and every critic, is incredibly unscientific, unprofessional, duplicitous, cowardly, etc., etc.

So no, I don't think it does strengthen their positions, unless their cheap and nasty misrepresentations are allowed to go unchallenged.

 

You are absolutely not alone in that Barry!

 

Regardless of whatever ideals you think should prevent this being the case, I think it's pretty clear that in the reality we face patients sending stupid and unpleasant messages on social media have made life worse for patients and made it easier for academics to get away with behaving badly. I don't understand how anyone following the history around ME/CFS, and looking at the way those with power over us respond, can think otherwise.

'Real scientists' are still flawed humans. Those who get the the top of the pile tend to have the traits of those who get to the top of piles. We can wish things were different but we've seen how they are.

 

I really don't see the validity or relevance of that E12. We are dealing with a quite unusual group of charlatans who have preyed on the ME community because the rest of the medical profession have no interest and find it convenient to let them do so.

The scientists I know who I consider at the top of the pile don't behave like this at all. They tend to be humble and considerate. Those who get to the top of the political pile are often not real scientists in the sense meant.

Listening to the BPS people I doubt patient remarks have done much harm. Their responses have made it easier to see just how disingenuous they are. Things were going to be the way they are anyway. I thought that Simon Wessely had actually moved on because of patient remarks. And the others in the UK have gone pretty quiet.

 

[my bold]

Exactly how it seem to me. I think from hereon the more they respond in this vein the less and less convincing their subterfuge becomes to more and more people. They are in the process of blowing their cover to the wider world, beyond those who have been aware of it for a long time.

 

Good find! Given that recent reporting, perhaps Garner should get the benefit of the doubt over this specific misstatement. I assume he had this recent claim in mind and conflated "Spanish flu" and "Russian flu" when speaking. I doubt very much he believes the Spanish flu was actually coronavirus. I could be wrong, of course. But I know from personal history it is very easy to misspeak sometimes in this way. That doesn't absolve any other concerns anyone might have about his television ruminations.

 

I agree that sending abusive messages can cause problems, and if people do that they should be asked not to or blocked or whatever, but in reality it is social media open to all, and that is simply going to happen no matter how much anyone pleads or asks people to refrain. That's not condoning anything, but people are going to ignore the very sage advice to not be an asshole online. Most but not all of what I've seen in our domain is what I consider legitimate expression and not remotely "harassment" or "abuse." The question for me is how much time should be spent trying to prevent it or to convince people not to do it when the very few who do it are likely going to do it anyway.

 

On the topic of the Russian Flu, this article came out in The Tyee, a Canadian progressive online news magazine, last week.

Is Our Pandemic the Ghost of the 1889 Russian Flu?
The ‘dreaded disease’ that claimed 1.5 million looks a lot like COVID-19, including the long-term threat posed by ‘viral promiscuity.’

Andrew Nikiforuk 14 Feb 2022 | TheTyee.ca
Tyee contributing editor Andrew Nikiforuk is an award-winning journalist whose books and articles focus on epidemics, the energy industry, nature and more.

https://thetyee.ca/News/2022/02/14/Pandemic-Ghost-Russian-Flu/

 

The ones at the top of the political pile still hold a lot of sway. The recent 'medical leaders' response to NICE shows that they're not that quiet. I get the impression that these sorts of people prefer working behind closed doors anyway.

We can say that the people we choose to respect agree with us on key issues, but the fact remains that a lot of the people with the most influence in UK medicine are sympathetic to Wessely and co, and I think that stupid and unpleasant social media messages from patients have helped him gain/maintain support from colleagues. I think that real harm has been done by patients behaving badly, and that even very mild or ambiguous examples of poor behaviour have been used to the benefit of PACE, Wessely, etc.

We're certainly never going to be able to stop the entirety of any group from behaving like assholes on-line, and the fact that many patients with ME/CFS have been treated very badly means that they're more likely to behave in a way that could be unfairly interpreted as asshole-y anyway. There is a limit to what can be done. But I think that we should at least recognise that there's a problem here that is making progress more difficult. Even just as individuals we could make an effort to avoid any behaviour that doesn't bring a clear benefit and could be interpreted as asshole-y by others.

I'm sure I fail at this, especially when reacting to some new irritating thing, but it is something that we should encourage a culture of awareness about. I used to message with a few other people who aren't around anymore to point out when we may have let our frustration get the better of ourselves and I think it's useful to have people rein one another in, especially when social media 'likes' and stuff can often seem to encourage the most abrasive way of expressing a point.

With ME/CFS being such a stigmatised condition it makes it easy for groups of us (and their welcome guests) to drift towards a shared consensus and way of using of language amongst ourselves that is far from the what is used by those we need to be engaging with. Any patients who are ruder or less well informed than most are particularly likely to get in trouble if they're absorbing comments from others that have a reasonable chance of being interpreted as misguided, ignorant or offensive by those outside of patients. I think that this is an area where it's really easy for people to not realise that they are getting it wrong.

 

It's possible that you're right @Esther12 and that the people who speak without checking their attitude and the facts don't do us any favours. But IMO they don't do any actual harm either.

The people who read the comments and then stand behind Wessely and co were always predisposed to do so I think. It's to me really a matter of people being followers and Wessely is the authority and therefore garners all the default support. People follow the leader even as they believe they are thinking for themselves.

It's even the case that many people have now spoken up either with ME or now recently from covid who confessed that they would never have believed us if it wasn't for the fact they got sick. People default to the authority, the easy thing.

It also seems to me that if there is a point to be had against the BPS approach as not scientific (and there is) any assholery on a poster's part really ought not to enter into it. I know that people are people and so it might but I also think it's fair to expect better from people who supposedly are supposed to know better. They should be able to look past any sort of post that comes off as frustration. After all we are talking about people who are very ill and frustrated. A sensible and grown-up sort would be able to be reasonable about some posts like that. Again all IMO.

We keep hoping the BPS will go away if we just behave well. I'm fairly certain they won't. We will have to wait for them to retire. And they will have mindless replacements.

Although it's a rather different sort of affair, I think of what it took to finally get justice for all the victims of Jimmy Saville. He was untouchable for decades. People knew what he was about but he continued to harm children despite that for a very long time. He was important. He was connected. He was knighted.

For me the truth is people don't want to see a train wreck of this magnitude as it happens slowly and continuously. A real train wreck in real time would keep them fascinated for days. But something like this is just to big and too remote to care. They use people letting off steam as an excuse for not believing. Because they are inclined already to not be bothered and to trust in authority. It makes them feel better. It might even help them feel superior.

If I had any energy at all I'd be pleased to be a continuous thorn in their side. Because they aren't going away. It will take brave people who work hard struggling for funds looking for the science behind our illness to cause the BPS to at least become background noise. Even as they double down on some other unfortunate illness group.

The idea of BSP might be fairly recent but the ideas they espouse are very old indeed. They go way back. Early shamans would be taking notes if they could.

 

In my opinion it's fairly clear that rights are not won by behaving nicely. You have to fight.

 

I just don't see this E12. I can't even think of an example of an unpleasant social media message right now. Maybe I just don't see them.

What has become clear to me since the 'pause' at NICE is just how ingrained the BPS approach is in the profession anyway. Wessely is popular because what he says suits doctors to a tee.

I don't think his influence has anything to do with abusive messages. What I do think has been unhelpful has been charities, advocates and private practitioners claiming things about ME that are so easily shot down. What doctors get annoyed by is patients coming along with masses of evidence for their needing anti-virals or supplements or treatment for mast cell activation or goodness knows what.

And as I have said, dealing with angry people is part of the job of being a psychiatrist. It is laughable that these people feel a need to moan to colleagues about how they are treated.

I am not supposed to say what anyone said at the Round Table but listening to Carol Black and Ilora Finlay it was clear that the level of injustice involved was understood. There was no hint that patients had blotted their copy book - they had given a wake up call.

 

And who is making a claim, or has ever made a claim, that there isn't a small section of the patient population who respond in a way that could be viewed as unhelpful?

Such as complaining about the actions of a small section of a patient population that is already stigmatised and is chronically ill with an energy limiting condition?

What really pisses me off in general is whenever someone takes a "high-ground" approach and is able to punch down at vulnerable parts of a patient population.

 

I personally struggle to gauge how comments I make (and other people make) criticizing certain people or certain research would be received by more disinterested people - whether they would see the way I'm responding as appropriate, and the tone and language as appropriate and persuasive. It's a really difficult thing to tell - I could ask people I know personally to give me feedback, but 1. That'd be a bit weird 2. They may not be honest. It's a tough problem. But people should keep in mind that just because something looks okay to them and those in their community, that isn't necessarily how it's seen by others. I think generally because most people wouldn't understand the full context of everything, it may be off putting to them if harsher language is used, since they probably don't understand the full context that's justifying that harsher language. That was certainly my initial response to seeing parts of the online ME/CFS community.

On a related note I don't think there is actually any harm in being a bit self critical, and I think for the most part it would only make patients/people look better than worse. Saying things like "Well, some patients have used language that was harsh, and some have occasionally said thing that weren't correct, and we're open to any suggestions on how to do better or fix any mistakes" isn't going to make a neutral party think less of patients - it's natural that things like that occur in any community/movement/whatever-the-right-term-is. It might make people with a negative view think some patients are more reasonable, and wouldn't change those with a positive view too.