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

Kalliope said:
Yes, a place where people could share their stories about undocumented treatments. How it has affected them as you say, the financial costs and also straight out harm for some.

I'm pretty sure the stories would soon exceed Recovery Norge's collection in number.
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Speaking of, does anyone know why the StopGET website/campaign disappeared? It had lots of personal stories, if I remember correctly?
 
Sphyrna said:

Like clockwork. Leave it to Robert Howard to demonstate his utter hypocrisy and resistance to learning whenever one of his cronies grants him a fit occasion.
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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.

 
Adrian said:
I always think there is an issue when looking at exactly what someone wrote. Writing is about 2 way communications how the reader reads and what they pick up is really a key part of the communications and that is based on a lot of context. In this case there are probably different groups of readers who may pick up on different messages but this needs to be part of any analysis - for example, is Garner playing to certain groups prejudices, are people picking up messages due to a history of similar words/sentiment which for example led to good/bad stuff to happen.

Its easy to look at a given line of text and interpret (with hindsight) as to give a particular message (that is what Wessely seems to do). But good writers know how to communicate to different audiences and use the contextual knowledge (and where to challenge that); bad writers struggle with this but that doesn't mean the context shouldn't be used in the analysis of what they are saying.

In the end if Garner's colleagues are seeing unfair criticism that probably reflects on their views (and scientific abilities!) more than anything.
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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.
 
Esther12 said:
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.
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Language has to be set in the social context that it sits in and the understanding of the reader. Words don't have meaning because of the definition in a dictionary; they have meaning due to they way they are used, common understanding and grounding to the world. Look at some of the implied racism that is in political statements - its not what is written but the underlying message aimed at certain readers. I think it is important to pull that language out and point out the issues that, in this case, patients will have with it. I don't think it is surprising to the writer, they don't want to be explicit about their views on patients due as the know that may be seen as unacceptable - but they also don't deny the message when challenged.


Esther12 said:
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.
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It can be frustraighting but I take it as them avoiding the subject because they have no real answers and their I view their whole 'cartesian dualism' stuff as simply using long words to avoid answering the detailed questions. I suspect others also see it as bluster.

Esther12 said:
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.
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I think 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 - as well as having detremental effects on treatment and health. Of course people like Wessely could respond by saying sorry that wasn't intended and changing their language - the same way as racists could stop trying to inflame situations - but they don't. So what challenging them is about is putting them in a situation where they cann't deny the impact of their words - if we say 'but this could be interpreted differently' we don't give a clear message. We of course have no control over how they act - but we can make the issues explicit and they know that in the long term this will reflect badly. I wanted to say something about how this would reflect on their internal self image but I think they are so aware of what they are doing by now that they probably know they hate patients and don't have an issue with it.

[Edit]
I will add that in criminology there is a notion of a 'capable guardian' as someone who may observe crime (either an official such as a police officer but also others such as friends or neighbours) and there presence stops crime (for example, slowing traffic can cut burgleries). I wonder if this notion extends to the language that people use against others and why messgaes are hidden - it gives the notion of deniability to wider socitety. But if a simple message of we know what you are doing and are watching you comes perhaps it helps from this perspective.
 
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Esther12 said:
Just in pragmatic terms
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That is the key, @Esther12.

Esther12 said:
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.
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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:

Sly Saint said:
nbcnews.com
Opinion | Women are more likely to be Covid long-haulers. Here's why that matters.


https://www.nbcnews.com/think/opini...re-often-women-maybe-it-ll-change-ncna1259686
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This is how it ends, describing Garner as the voice of millions with ME/CFS, who were previously unheard.

While the U.K.'s Royal College of Occupational Therapists has released guidelines on managing post-viral fatigue after Covid-19, no American medical group had done similar by August 2020. Awareness of post-viral fatigue and CFS/ME was also boosted in the U.K. by the experience of Professor Paul Garner, the infectious disease specialist who has been publicly documenting his Covid-19 journey since May 2020.

Could it be that the voice of an expert male professor and a worldwide pandemic finally bring overdue attention to these debilitating conditions?

Whereas he was initially sure his condition was not post-viral fatigue, by June he had changed his tune, pointing out his symptoms felt very much like CFS/ME and calling for greater awareness and recognition of the condition. "Health services are largely institutionally prejudiced against people with chronic fatigue and ME, and in some cases these attitudes are framing the service response to Covid-19," Garner wrote in a blog post on The BMJ's website in June.


"Yet for us 'long-haulers' the symptoms are the same, the management schedules are the same, even if we don't quite fit the somewhat arbitrary definition of 'chronic' at 4 months."

Garner emphasized the scale of the problem: "A post-viral tsunami is hitting our health services right now, yet in the U.K. it doesn't even seem to be on the national agenda."

He concluded his post with a call for doctors to be more understanding and educate themselves about the condition. "This stuff is real. People are ill. Doctors need to stop diagnosing this as anxiety. We have messed up before, let's not do it again with long term Covid-19 illness."


In documenting the questioning of his own sanity, the frustration of being given poor advice and the stress of not knowing where his illness will lead, Garner has given voice to the millions of women and other people who suffer from CFS/ ME and chronic pain conditions.

Could it be that the voice of an expert male professor and a worldwide pandemic finally bring overdue attention to these debilitating conditions?
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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.
 
Adrian said:
Language has to be set in the social context that it sits in and the understanding of the reader. Words don't have meaning because of the definition in a dictionary; they have meaning due to they way they are used, common understanding and grounding to the world. Look at some of the implied racism that is in political statements - its not what is written but the underlying message aimed at certain readers. I think it is important to pull that language out and point out the issues that, in this case, patients will have with it. I don't think it is surprising to the writer, they don't want to be explicit about their views on patients due as the know that may be seen as unacceptable - but they also don't deny the message when challenged.


It can be frustraighting but I take it as them avoiding the subject because they have no real answers and their I view their whole 'cartesian dualism' stuff as simply using long words to avoid answering the detailed questions. I suspect others also see it as bluster.


I think 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 - as well as having detremental effects on treatment and health. Of course people like Wessely could respond by saying sorry that wasn't intended and changing their language - the same way as racists could stop trying to inflame situations - but they don't. So what challenging them is about is putting them in a situation where they cann't deny the impact of their words - if we say 'but this could be interpreted differently' we don't give a clear message. We of course have no control over how they act - but we can make the issues explicit and they know that in the long term this will reflect badly. I wanted to say something about how this would reflect on their internal self image but I think they are so aware of what they are doing by now that they probably know they hate patients and don't have an issue with it.

[Edit]
I will add that in criminology there is a notion of a 'capable guardian' as someone who may observe crime (either an official such as a police officer but also others such as friends or neighbours) and there presence stops crime (for example, slowing traffic can cut burgleries). I wonder if this notion extends to the language that people use against others and why messgaes are hidden - it gives the notion of deniability to wider socitety. But if a simple message of we know what you are doing and are watching you comes perhaps it helps from this perspective.
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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.

Jonathan Edwards said:
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.
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I have way more doubt than you on this one!
 
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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.
 
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Robert 1973 said:
I’ve submitted the following complaint to the BBC via its website. There is a 2000 character limit so I had to edit what I originally wrote. Details of the programme etc. are all submitted in separate fields in the form. Past experience suggests they will delay the maximum amount of time before rejecting the complaint for spurious reasons. I will then escalate it to Ofcom, which will probably do the same.
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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:

Dear Mr Saunders 

Thank you for contacting the BBC regarding an edition of Breakfast on Thursday 28th January 2021.

We're sorry for the unusual delay in responding here, it's taken longer than usual and we apologise for the wait. Your views have been shared with the senior team at BBC Breakfast.

The segment of the programme was clearly introduced as looking at the issues faced by individuals who were still suffering with long term issues related to coronavirus and multi-organ failure.

Our guests, Dr Clare Gerada and epidemiologist Professor Paul Garner, were speaking in a personal capacity about their experience of recovering from coronavirus.

They both detailed how they had tried to improve their health in light of the issues they faced.

While they both explained they had used exercise, both the presenters and guests also made it clear that this could only be done in moderation and with guidance.

Their personal contributions were useful because of their medical background, but they were not passing comment on making recommendations for other, very different, conditions.

Thanks again for getting in touch.

Kind regards,

BBC Complaints Team
www.bbc.co.uk/complaints
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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.
 
Wonko said:
they didn't want the personal viewpoint of 'normal' people, they wanted the opinion of those seen as medical 'experts'.
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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.
 
Andy said:
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
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If anyone was still giving PG the benefit of the doubt......

on the positive side it’s a letter not an article

eta note the specific wording about no harm shown in trials rather than arguing GET doesn’t cause harm so they have conceded that wider point
 
"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.
 
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