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

Speaking of, does anyone know why the StopGET website/campaign disappeared? It had lots of personal stories, if I remember correctly?

 

I don't really know where else to put this but have to share. They really do think we are so stupid we can't even read, I guess. Or more likely they just know there's nothing we can do about it and so there's no point actually pretending they believe in their own crap.

It's all just projection with them. This narrative is for themselves, to justify their lack of evidence. They just project their own failure onto us, we can't do anything about it anyway so it doesn't even matter to reveal the con, nobody who can do something about it cares.

https://twitter.com/user/status/1368534426984927238

 

I think that's an interesting point for why I disagree with the approach some people are taking.

Generally, I would want to do what I could to remove myself and my personal interpretations from my criticism of someone else's writing. No-one can do that completely (or anything like), but I think I see that as a limitation and ideally I'd want anyone reading my criticism to be focussed on the text I thought warranted criticism rather than my interpretation of it and how this differed from exactly what was written. The idea that people would think that there's an issue with looking at exactly what was written hadn't really occurred to me. Trying to respond, so much as is possible, to exactly what was written was drummed into me as a child and it hadn't even occurred to me to question it - to me it seems like a clearly good thing to do.

Explaining and exploring the context in which something is written is often useful, and that can include assessing how different group are likely to read something, but to me that's a different issue and is again something that is strengthened by trying to respond to exactly what was written.

Doesn't it piss you off when criticism of PACE is interpreted according to the assumptions of Wessely/Sharpe/White/BPS colleagues, and then instead of responding to exactly what was written they respond to society's problem with Cartesian dualism, or stuff like that? Would your approach let them justify that by saying that their history and personal understanding of this dispute provides an insight into the intent behind the words? I guess that almost no-one seems to care about them misrepresenting their critics anyway.

Just in pragmatic terms: when those with power over us will tend to not share our context and history so much as they do Wessely's, Garner's, etc, doesn't allowing things to move away from exactly what was written and onto personal interpretations favour our opponents rather than us? One can say that there's a problem with people in power often not understanding the context in which someone like Garner is being criticised, but at the end of the day it's a problem that's likely to damage us more than them. On the other hand, it seems clear that things are already largely driven by the personal assumptions of those with power.

I probably need to consider it some more. All my instincts are that it sounds bad. Also I suspect that any approach which endorses having discussions move away from exactly what was written (rather than tries to limit it as an inevitable problem with human communication) is likely to favour those who have more power than us.

 

That is the key, @Esther12.

I think Ruth Kempson has shown mostly elegantly with her 'Dynamic Syntax' that meaning does not lie in what is written alone. Natural language never operated like that. Charles Travis spent years showing how much truth value of language depended on context in the view known as Radical Pragmatics but Kempson and others have shown that meaning itself is entirely context dependent. Thus the the meaning of 'Yes please', which isn't even a sentence will arise from the question it responds to 'would you like a scone?'

The doctrine of 'The Text' so popular with English Language academics in the 1960s (promoted by George Steiner if I remember rightly) was empty wishful thinking. There is no defined meaning of the text alone. Everything is context.

And I think the interpretation of Garner's words is not analogous to the interpretation of patients' remonstrations as Cartesian. I don't think there is much doubt about what patients want to mean or what Garner wanted to mean. Whether or not that meaning is scientifically sound or belongs to some particular cultural meme is a quite different issue.

Meaning does not lie in just what is written in a vacuum.

Edit: cross posted with Adrian, but yes there is a sound theoretical basis for rejection of the doctrine The Text.

 

This was originally intended as a reply in the "Possibility of ME or PVFS after COVID-19, Long Covid" thread but then I decided to post it here instead:

This is how it ends, describing Garner as the voice of millions with ME/CFS, who were previously unheard.

This may have been written before Garner's views changed because at the end it says it is excerpted from the book "Pain and Prejudice: How the Medical System Ignores Women — And What We Can Do About It," by Gabrielle Jackson.

 

I agree with a lot of this, but am not sure how much of it really applies to Garner's blog or the concerns I'd been trying to raise.

For 'trying to respond to exactly what was written', I've always meant that in terms of the common usage of language, which I don't think supports the view that he said "don't listen to patients who are still ill".

I wouldn't disagree with this either: "the criticism should be about patients saying when you say this given your history of action (as a whole not individuals) we see the language as disempowering and aimed at removing our voice". But that is not the point many people have been making, and it seems a complicated one for tweets. In just practical terms, I suspect that any piece of writing that laid out the history in a way that would let this point be understood by those previously ignorant to the context would be of such length, and include so many more substantive reasons for concern about the way ME/CFS has been treated, that it would end up seeming a bit pointless to tie that history to something as relatively trivial as Garner's blog.

There are ways in which the experiences many ME/CFS patients mean that they are more likely than others to view what was in the blog as part of an attempt to remove their voice and dismiss their concerns. I understand that context and history, but I don't think that many people other than ME/CFS patients do, and I'm far from sure Garner does either. Have any of his blogs indicated any real depth of understanding on these issues? I understand why people may think that parts of his blog seem to have been written by someone who does have some understanding of those issues and could even be attempting to goad patients, but that could be coincidental, it could be that some of Garner's blog was influenced by others he had been speaking to... we don't know. Garner had a really weird year and that will probably makes it even more difficult to understand what he was thinking and why.

At least in the UK, ME/CFS patients don't have anything like the social status of those speaking out about some of the more covert ways racism is expressed.

Some of our judgements on likely outcomes are necessarily hunches and it's going to be difficult for either of us to know who is right. Hopefully you are.

I have way more doubt than you on this one!

 

Let's just stand back a little and review this situation.

This person is a professor who also happened to become ill with an apparently self limiting illness. I'm going to go ahead and call it self limiting because he hasn't has any treatment scientifically proven to aid recovery.

In addition this guy is a Professor of infectious diseases so he should have had some prior knowledge of the long term sequelae of that some experience after a viral illness.

If a professor can't make his meaning clear without someone else bending over backwards to try to squeeze the best possible interpretation of his words - words that throw the effort and goodwill of patients who have tried to support him, patients who may have been much sicker & for decades longer - then he's a cr@p professor. Or he's doing it deliberately.

You may well argue that he's had a bad year. Forgive me, I have had a bad couple of decades and compared to some around here I'm a newbie who's had it easy, so he's not experienced anything I haven't. Many of us did pull our metaphorical punches early on when he was spouting tripe. He was given the benefit of the doubt initially.

You may well feel that as a patient he deserves some leeway. I might agree but he's not blogging or tweeting as a patient, is he? He is using his authority as a professor to make himself heard. He could just as easily opened a twitter account or written a blog simply as @PostViralPaul.

He can't have his cake and eat it @Esther12. Anymore than the rest of us.

 

Exactly @Invisible Woman

https://twitter.com/user/status/1314342414023364608

 

After 6 weeks (they say they normally reply within 10 working days) I’ve finally received a predictably inadequate response from the BBC to my complaint:

I will now refer my complaint to Ofcom.

 

They weren't tho were they. They weren't 'selected' and put on TV for any other reason than because of who they were. Because of their 'medical' positions.

Mr J Giles of 56 Shorts Bridge Road, Clandidno wasn't put on - despite any symptoms or experience he might have had, were he not fictitious, because he wasn't a public facing 'medical professional'. they didn't want the personal viewpoint of 'normal' people, they wanted the opinion of those seen as medical 'experts'.

This whole 'personal opinion' thing when it clearly isn't - is really starting to 'irk' me.

 

I notice that Mrs Trellis of North Wales* has conspicuously not been featured yet. This alone is grounds for complaint, as she is clearly being silenced.


*May only make sense to fans of I'm Sorry I Haven't A Clue.

 

I don't think you'll get anywhere but thanks for the effort.
They've made it very clear they think that these conditions are 'very different'.

So I expect this means that people with LC can expect to be gaslit if they don't recover as per the therapy that worked so well for CG and PG.

 

Long Covid and graded exercise therapy

No trials of graded exercise have shown to harm patients, say Dr Alastair Miller, Prof Paul Garner and Prof Peter White, so those with post-Covid fatigue syndrome should not be discouraged from trying it

https://www.theguardian.com/society/2021/mar/11/long-covid-and-graded-exercise-therapy

 

I need to stop checking Twitter for the sake of my health.

 

Yep, I wondering how it will be framed that we are misunderstanding him this time...

 

"In contrast, we know that graded exercise therapy is an effective treatment for chronic fatigue syndrome (or ME), a clearly related condition. Moreover, no trials of graded exercise have shown harm to patients."

Hey guys, the science is settled, didn't you hear? Stop discussing this issue. The. Science. Is. Settled.
Imagine the absolute chutzpah needed to personally run p-hacked trials with inadequate reporting of harms, only to then issue a statement like this to the press.

 

@PhysiosforME have a short Twitter thread providing a counter argument here

Code:

https://twitter.com/PhysiosForME/status/1370090545679372288