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

Esther12 said:
I'd be much more irritated by someone saying that they don't think I should be listened to, rather than saying that they didn't find what I have to say about how to recover from ME/CFS useful.
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I write this to my fellow covid-19 long haulers whose tissues have healed. I have recovered. I did this by listening to people that have recovered from CFS/ME, not people that are still unwell; and by understanding that our unconscious normal thoughts and feelings influence the symptoms we experience.
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I'm really struggling with your logic here @Esther12. On the subject of recovery, which to me includes what research is needed to enable more people to recover, don't listen to those who are still ill, just those who have already recovered?

I honestly think you.may be over analyzing what the guy said and coming up with a different meaning. Especially in the context of his current opinions.
 
Esther12 said:
I also think many of Garner's colleagues would see a difference between what Garner wrote and what some people are accusing him of having written.
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I do not see that as credible @Esther12 , as one of Garner's colleagues. I think all his colleagues will read what he said as the dog whistle in support of Flottorp, Greenhalgh, Wessely, Vogt or whoever you like in that crowd that it is. Garner was paying his dues for having wandered from the straight and narrow a few weeks before.

From the professional point of view Garner is way way out of line, as I indicated on the BMJ site. Wessely was similarly out of line in the past but remarks dropped like Garner's as quick innuendo are in my view significantly worse. At least Wessely was being up front.
 
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Invisible Woman said:
I honestly think you.may be over analyzing what the guy said and coming up with a different meaning.
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I'd wanted to argue against heavily analysing and interpreting what he wrote, especially if done in the light of our own knowledge, and instead say that if people want to respond it would be best to do so to just what he wrote. ie quote a sentence he wrote and then exaplain why that is wrong/unfair, rather than criticise him for an interpretation of what he wrote.
 
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I would really hope that his colleagues see what he wrote re: listening only to the patients who recovered as unscientific and frankly absurd.

"We need to listen to communities of people who have recovered from illness, says Paul Garner" - the subhead, which he presumably did not write. Did an editor at BMJ write this? It's the framing for the whole piece. I found this distasteful and unethical. What is the implication here? Are they being silenced??

"I did this by listening to people that have recovered from CFS/ME, not people that are still unwell" - at the end of the piece.

He's not just saying that he listened to recovery stories. He explicitly states that he did not listen to patients who are "still unwell". It's hard to know how else to interpret this and I would really hope that any colleagues reading the piece would be having alarm bells go off. It's survivorship bias, among other things that are deeply wrong; profoundly unscientific and unethical. I am genuinely surprised the piece was published in this form, and even more surprised that the BMJ chose to highlight this aspect in the subhead. I am really hoping it is striking many readers as simply absurd. You don't need a lot of background knowledge.

I don't think this is over-analysing it.
 
"I did this by listening to people that have recovered from CFS/ME, not people that are still unwell".

"We need to listen to communities of people who have recovered from illness, says Paul Garner"

Do such communities exist, for long covid or for ME?

3 states;

'recovered', I would have assumed that once 'recovered' people just drift off in the main, and cease to be part of the community.
still 'unwell', Specifically do not listen to
dead, although not still ill, so a sort of 'recovered', they are not normally that chatty.
 
Wonko said:
"We need to listen to communities of people who have recovered from illness, says Paul Garner"

Do such communities exist, for long covid or for ME?
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Just seems like disingenuous framing, trying to co-opt language of social activism for political end of promoting BPS agenda. The actual "community" he's defending seems to be a small number of researchers who use recovery stories as part of their pseudoscientific narrative. What I found odd was that this particular text was presumably coming from a BMJ editor, as it's the subheading. How did this piece come about?

Chronic illness, contrary to some people's opinion, is not a cult. When you recover and "leave" you don't form a support community! It's not like being an ex-Scientologist. (I'm not suggesting that this connotation is intended!) It's a bizarre sentence, though. Who wrote it, and why?

Apologies in advance to the ex-illness-having community!
 
An excellent point that I hadn't caught.

Exactly who are these communities of people recovered from illness? And why are they creating them rather than just getting on living their lives?

Seems like a waste of recovery if you're purpose is to spend your time going on and on about recovering. Why not live your life? Seems a kind of evangelism.
 
Snowdrop said:
An excellent point that I hadn't caught.

Exactly who are these communities of people recovered from illness? And why are they creating them rather than just getting on living their lives?

Seems like a waste of recovery if you're purpose is to spend your time going on and on about recovering. Why not live your life? Seems a kind of evangelism.
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It is clearly from an LP evangelist. It's a pyramid selling scheme where people who have 'recovered', ie been persuaded to swallow the pseudoscience and parrot the mantras, can spend even more money training as LP coaches and make money from it.

So there are lots of LP 'recovered' patients whose livelihood depends on them publicising their claims of recovery in order to keep the business going. Their job and community is all about being 'recovered'. I assume that's the people Garner is referring to. People with something to sell.
 
Esther12 said:
I also think many of Garner's colleagues would see a difference between what Garner wrote and what some people are accusing him of having written.
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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.
 
Trish said:
It is clearly from an LP evangelist. It's a pyramid selling scheme where people who have 'recovered', ie been persuaded to swallow the pseudoscience and parrot the mantras, can spend even more money training as LP coaches and make money from it.

So there are lots of LP 'recovered' patients whose livelihood depends on them publicising their claims of recovery in order to keep the business going. Their job and community is all about being 'recovered'. I assume that's the people Garner is referring to. People with something to sell.
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Perhaps we should start a campaign of our own to expose scam selling of this sort and how it affects the victims.

protecting future victims seems like something the charities should consider
 
It got so common it became a cliche. I was very sick with X. My family and friends suggested I tried Y but I did not think it would do any good. After a while I became so I bad I decided to try it. It worked so well I am now completely recovered so I now sell Y so that everyone with severe X can get better too.

Usually printed in the local newspapers but if they are really lucky they get the item onto BBC radio or TV or even a book deal. Managing to get a piece in the BMJ is exceptional so that may because he is not actually the one earning money from it.
 
arewenearlythereyet said:
Perhaps we should start a campaign of our own to expose scam selling of this sort and how it affects the victims.

protecting future victims seems like something the charities should consider
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The LP coaches advertise their 'product' on Youtube. I down voted some of them and posted comments explaining the problems with LP (along with a few other people) but ALL critical posts were removed and the Like/Unlike system was disabled.

It seemed odd to look at the remaining positive comments that were all mainly about not understanding the negative attitude of most of the other comments, that weren't there!
 
arewenearlythereyet said:
Perhaps we should start a campaign of our own to expose scam selling of this sort and how it affects the victims.

protecting future victims seems like something the charities should consider
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Perhaps a video of our own on Youtube were we have control of the comments section.
I thought about doing it myself but I'm pretty useless at that sort of thing and I know there are many talented people on here who would do a much better job.
 
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Adrian said:
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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Or their agenda.

Capture of academia is a well recognised process alongside regulatory capture, historically people have been secretively paid to act publicly in the interests of certain corporations.

I was browsing famous corporate shills the other day, like you do and came across this neat summary of the evidence against a bakers dozen of academic shills, which gives us some idea what is possible.

"13 Academics Who Are Shills for Corporate Giants"
https://www.ecowatch.com/academics-shills-corporate-giants-2003189085.html
 
Wonko said:
"I did this by listening to people that have recovered from CFS/ME, not people that are still unwell".

"We need to listen to communities of people who have recovered from illness, says Paul Garner"

Do such communities exist, for long covid or for ME?

3 states;

'recovered', I would have assumed that once 'recovered' people just drift off in the main, and cease to be part of the community.
still 'unwell', Specifically do not listen to
dead, although not still ill, so a sort of 'recovered', they are not normally that chatty.
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And isn't it odd that they want to hear from "recovered" patients who are more ill than when they started - as long as it's in the form of a questionnaire that isn't fit for purpose, filled in after you've more or less trained people how to fill it in.

Yet they don't want to hear from those same patients when they want to speak up in their own words later.

Same with LP, the responses when they're still amped up by the course and believing they think themselves well are accepted but in 6 months or a year when the wheels come off? No thank you.

Same patient. Different reaction and that reaction is purely based on whether the patient is agreeing with they message they want to send out.

Yet, with a fluctuating illness where remission can occur this is bound to happen.
 
Esther12 said:
I'd wanted to argue against heavily analysing and interpreting what he wrote, especially if done in the light of our own knowledge, and instead say that if people want to respond it would be best to do so to just what he wrote. ie quote a sentence he wrote and then exaplain why that is wrong/unfair, rather than criticise him for an interpretation of what he wrote.
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I can why that might seem fair. In view of the liberties taken with language by the BPS I'm afraid that I am inclined not to grant such favours.

If he doesn't like it he can complain to Simon Wessely & his pals and he can always set the record straight himself.
 
arewenearlythereyet said:
Perhaps we should start a campaign of our own to expose scam selling of this sort and how it affects the victims.
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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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