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

More than anything I am amazed at the lack of other medical professionals calling him out. That's what I don't understand, the near universality of those beliefs where science and reason are nowhere to be found, blatantly unscientific. And yet from professionals, and professional "skeptics"? Nothing but praise or silent acquiescence. It's like a trip centuries in the past, but right here in the present, co-existing like alchemy and nuclear physics. So bizarre.
 
Kalliope said:
The ME activists came after me,
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Oh noes!


Kalliope said:
Some seem rational on the outside
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Others less so.


Kalliope said:
that now I have to shut up and stop talking about CFS / ME
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Please do <3


Kalliope said:
I experienced a fear that locked me inside. It's very lonely for people, I think. The expectation that I would not get better was frightening.
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I find lying half dead, paralyzed in bed, feeling like every cell in your body is breaking down, unable to communicate, not getting any medical assistance, struggling to chew whatever food you are served, for months/years, a tad bit worse than someone panicking about a transient issue.


Adding years of aggressive faith healers who further stigmatize the condition, reducing the chance others in similar states get help, tainting the individuals giving whatever social-network is left plenty of socially acceptable excuses to abandon the sick person, or worse, leading whoever is left to care for the individual to neglect/abuse the individual out of ignorance/desperation/stupidity on top of that, to be a message that would be of more social importance than this guys need to let everyone know that his physical entity once was unable to correctly predict the future and journalists apperant lack of experience with League of Legends, the Internet and human beings in general.

I came accross an old recovery story on aktivprosess.no from 2008. Parents of a 10 year old girl, sick for 6.5 months, tube fed. They say they could not accept she might be sick for 2 years any that they wanted her healthy. "After the first day (where she just cried and wanted to go home) she walked for the first time in 3 months." On the third day and after many processes she said she was feeling much better and did not have ME anymore. The parents where grateful that they could now function like a normal family again and unable to understand why psychologists and doctors find it so difficult to belieive that this is the solution.


Ignorance or not, I can't sympathize with this guy. If people are upset, ask why and listen. That goes for journalists aswell. If they had, the fact that some people get post-viral conditions and that plenty of them recover, might not have been news to this doctor and his worries could have been alleviated.


Oh and on the note of deaths and threats and such.

How many ME/CFS patients have died? Maybe Dagbladet could write a story about that.

If there are no official data on that, then maybe he, as an epidemiologist, has the capabilities to find out and add something to the knowledge base.
 
Many ME sufferers can't interact with the health service due to fear of death. Many of us can't go into a hospital and feel safe that we're actually going to come out alive, and even if we do, there's a very real threat that what remained of our health will have been ruined. Exactly who poses a threat of death to who here? Typical projection from Garner, claiming to be the one under threat. All this staring down the barrel of a gun nonsense, the guy's obsessed. He actually gets to posture all over social media and anywhere else he can, boasting about diving holidays and saying what he wants about whatever and whoever he wants without regard for the consequences.

I could go on, but I'm trying not to waste any more time and energy on this posturing embarrassment. When he was ill for a few months he shat himself and fell for the biggest load of quackery

I'm sorry, I really need to stop.
 
Esther12 said:
If any response, just point out the relatively high rate of natural recovery from post-viral symptoms of the duration Garner reported and the difficulty of drawing conclusions about what led to recovery from personal experience. Could point out that many people have come to believe that one of many different things led to them recovering? I'm not sure there'd be much value in even that, and I expect that completely ignoring it would be better.

I don't think that critical responses to Garner himself on social media were likely to be anything but unhelpful, though some people are far better at phrasing criticism in a polite and charming manner than I.
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I do think it is useful to point out the irrationality of his argument. He is meant to be an expert in evidence and he is talking complete rubbish and he should be challenged on that - in a polite way. I think a lot of the comments were politer than many academics would get if they stand up in a seminar and talk complete rubbish - it just seems not to happen in the medical profession where deference seems to be the order of the day.

I tend to think if someone high up speaks complete rubbish they should get pushback. (we may expect it from others but they should know better)
 
Trish said:
I saw on the media somewhere that a female tennis player said she expected to get multiple death threats following her losing a match. It is routine now for their support teams to need to filter what the player sees, and they often don't follow any social media during a tournament to protect themselves from seeing this stuff while focusing on their matches.
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In the tennis world, it seems to be largely from people who have bet and lost money on the result of the player's match when it didn't turn out as they'd expected - that's my impression.
 
Adrian said:
I do think it is useful to point out the irrationality of his argument. He is meant to be an expert in evidence and he is talking complete rubbish and he should be challenged on that - in a polite way. I think a lot of the comments were politer than many academics would get if they stand up in a seminar and talk complete rubbish - it just seems not to happen in the medical profession where deference seems to be the order of the day.

I tend to think if someone high up speaks complete rubbish they should get pushback. (we may expect it from others but they should know better)
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I guess we all have different views on what is 'complete rubbish' and what counts as being 'high up', and in what context. There are a lot of people that we should be trying to reach out to who do not see Garner telling his view of his story as an example of someone high up talking complete rubbish - if they did then things would be very different. I've always felt like Garner's blogs were more 'personal stories' - his personal story was emphasised in the media and BMJ because of his position and connections, as is often the way in our society but I'd thought some people were responding to his anecdotes as if they were more 'high up' than they were. I thought a lot of Garner's blogs had problems with them if they were viewed as more than a form of online diary, when he was criticising GET and the prejudices faced by those with ME, and later.

Criticising anecdotes doesn't seem a great use of time, and too easily ends up going somewhere unpleasant imo. Also, we've got so many more important things we could be doing, and that I know I've failed to do so. Has anyone completed a thorough examination of the claims in the HRA PACE letter? I saw a couple of early drafts that got bogged down in trying to unpick the many things wrong with it. Focussing on Garner's anecdotes is easier, but not very useful, and not really a good example of challenging important authority imo. And I include my posts in this thread as an example of largely unproductive time that would be difficult to justify as a form of advocacy.

I agree that a lot of the comments responding to Garner in a critical way were polite. There were a lot of people saying how pleased they were he'd recovered and then making mild and reasonable criticisms. But there were also those taking a harsher tone which could help play into, or even encourage, the few people saying things that I think are completely unacceptable (generally from a predictable two or three twitter accounts like that quasar9uk).

It always seemed likely that any harsher tone in responding to a personal story would do more harm than good. I also expect that more important than what we're seeing publicly with articles like the one in Dagbladet is what's going on behind the scenes amongst those connected to Garner, maybe only peripherally. It always seemed likely to me that the response to Garner was going to make things worse for patients.

Parsnip said:
Ignorance or not, I can't sympathize with this guy. If people are upset, ask why and listen. That goes for journalists aswell.
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A lot of this could go in the other direction too. How many people have genuinely tried to understand why Garner is upset? Or the journalists who find writing about ME/CFS leads to unpleasant pushback that they don't understand? Very often, we don't try very hard to understand other people. There are so many people suffering in different ways around the world that I know I turn a blind eye to. I'm not sure we can expect more from others than we're willing to live up to ourselves.

On a different note, while it's always irritating when people avoid an argument to psychoanalyse those they think are wrong, my partner just mentioned an article which argued that the way people can put celebrities on pedestals serves to dehumanise them, which then makes their usual falls even harsher. I wondered if some people might have thought Garner's earlier blogs were solid and that having someone like Garner speaking out on these issues could be a turning point for us, so that could play a role in later criticism that to me always seemed likely to be counter-productive?
 
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Esther12 said:
There are a lot of people that we should be trying to reach out to who do not see Garner telling his view of his story as an example of someone high up talking complete rubbish - if they did then things would be very different. I've always felt like Garner's blogs were more 'personal stories' - his personal story was emphasised in the media and BMJ because of his position and connections,
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What I really mean here is that he is someone who is involved in pushing for evidence based medicine but pushing particular treatments based on his personal anecdote. He did start off with personal stories in his blog but moved on to a press tour talking about thinking yourself better. I don't think we should criticise his personal story but its the way he is using that to promote his think yourself better beliefs. When others promote a 'cure' based on anecdote that is annoying but when someone who is meant to be a scientist with beliefs in evidence based medicine then they are lending such titles to the views they push. Of course really those in the medical profession should be telling him that he is wrong and promoting non-existent evidence - instead they are trying to block the NICE guidelines with very similar prejudice.
 
I don't think there's anything to be gained from engaging with or paying attention to Garner in any way. He isn't some great authority, he's just someone with quite a narrow field of expertise (applying preset methods used in systematic reviews - the only research he does, and the only research he's done for a long time). That field of expertise doesn't extend to all the claims he's making, he's just a guy with an opinion. Good for him. But I don't think arguing with him is productive or will achieve anything or get anywhere, nor will it convince any onlookers.

I think spending time on this guy who essentially has no relevant expertise or knowledge who likes to spread his personal opinions is a timesink and distraction.
 
I agree that this isn't the best place to use lots of time and energy, but Garner is copying a lot of the rhetoric from Recovery Norge. He is of course welcome(ish) to tell his own story, but not to extrapolate and make it universal on behalf of whole patient groups, both ME and Long Covid, who don't feel the slightest represented by him and his experience. I'm sure we all agree.

But the relentless kicks towards ME patients and ME organisations from Garner worries me.

A lot of the stories from Recovery Norge include one way or another that if they had been listening to ME patients and patient organisations, they would never have improved. ME patients and patients organisations are standing in the way for recovery. I've even seen accusations that patient organisations don't want ME patients to get better.

Recovery Norge not only says it's important to listen to everybody, but they repeat again and again that it is the stories of those who have recovered that should be of most interest. This has been an effective strategy for inviting themselves as user representatives in research projects and developing new ME guidelines in Norway, and at the same time shutting the doors for critical voices who want evidence based treatments by painting us as gruesome antagonists. This combined with them telling a story everyone wants to hear, of improvement with no medical intervention. No need to spend money on developing treatments and clinical care for a patient group when there already are solutions as mindfulness, LP and what-have-you.
 
Arnie Pye said:
I think that is partly the reason. But I think a more important reason was that he was a doctor telling the kind of stories that the media wanted about the pandemic and which didn't contradict government propaganda.
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But his earlier blogs talked about how Long Covid needed to be taken seriously, raising concern about the institutionalised prejudice around ME/CFS, etc. Then even earlier ones had seemed to imply dismissive attitudes towards ME/CFS. There is a tendency to promote those whose personal story fits with particular interests, but in this case we've seen how the emphasis of the story kept changing.

Adrian said:
What I really mean here is that he is someone who is involved in pushing for evidence based medicine but pushing particular treatments based on his personal anecdote. He did start off with personal stories in his blog but moved on to a press tour talking about thinking yourself better. I don't think we should criticise his personal story but its the way he is using that to promote his think yourself better beliefs. When others promote a 'cure' based on anecdote that is annoying but when someone who is meant to be a scientist with beliefs in evidence based medicine then they are lending such titles to the views they push. Of course really those in the medical profession should be telling him that he is wrong and promoting non-existent evidence - instead they are trying to block the NICE guidelines with very similar prejudice.
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He'd been in the press with his earlier personal story blogs too though. He was then promoting other views based on his personal story. To me, that always seemed a risky thing to connect to ME/CFS advocacy efforts given the way personal stories can go all over the place - he was likely to recover and we've seen the wide range of varied treatments and approaches that recovered patients can connect to their recovery with misplaced confidence. His blogs always had pseudo-scientific elements to them, but tbh, that's pretty common in the way lots of people approach their ill health, and especially poorly understood conditions like ME/CFS. I'm not sure it's much rarer amongst those in EBM than the general public. Some of Garner's more recent work plays into prejudices and tropes that are likely to be particularly hurtful to many ME/CFS patients but I'm not sure that as examples of scientific thinking they're really much worse than what came earlier. If people were not criticising his earlier blogs when they seemed to support a different narrative then that's an extra reason to be cautious and restrained in criticisms of his later writing imo.

Also, just on a human level, Garner went through a really strange experience that it's worth trying to be understanding of before making personal criticisms of him. I think he's behaved in some unreasonable ways but I can see why from his perspective a lot of ME/CFS 'advocacy' could now seem like a poisonous and destructive movement that needs to be fought against. This is something that some others in science also believe, and it has an important impact on our lives. It's easy to point to examples of misinformation and prejudice that encourage this narrative but and I also think it's worth reflecting on what we could do to lessen that concern, and what patients can do to play into it. If we're not able to learn lessons from when things go wrong then we're going to be stuck repeating mistakes.
 
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I think @Esther12’s points are worth thinking about, but don’t have the capacity to say where I might differ.

I’ve been thinking about this thread. Truthfully I think quite a bit it is more counterproductive than helpful in terms of advocacy. It’s not an advocacy thread, and isn’t in the advocacy forum and S4ME including the members area isn’t private.

I wonder what impression is given by this thread, probably not a good one on balance; similarly patient responses elsewhere online I suppose, though I don’t really use social media. The sheer volume of criticism and comment in this thread, some of it about PG as a person whom none of us know, must seem obsessive, stalkerish and mean to some observers and they could make a good case for that in my opinion.

At the same time some members want to express their feelings about what Paul Garner is saying and doing, or critique his statements, and people are able to say what they want within the law and forum rules.

I do think threads like this are problematic.

Personally I find this thread energy sapping, overwhelming and a bit oppressive. Until yesterday I think I had resisted the temptation to post a comment that was actually about PG. Maybe I should have kept it that way as I keep second guessing what I’ve said. (I wish my brain didn’t go awol so quickly!).

To return to the subject of death threats - That has my sympathy, it’s horrible for anyone. I wasn’t sure about the news source, and there have been a few demonstrably dubious claims about threats in the past; however it was given as a quote from PG and I’ll take his word for it. There’s no good reason to do otherwise in my opinion. None of us know the facts of what has happened there.

That’s probably as much as I want to say here.

edit to remove a repeated sentence
 
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Did Garner really have such a strange experience? It seems like a fairly ordinary experience of postviral illness. That includes the grasping for straws in the form of quack treatments, and the interpretation that he beat the illness due to moral strength.

If anything is unusual it's a press that is willing to amplify any message, no matter how weird, as long as it comes from a professor of medicine.

If he said that one can snap out of <insert other illness than ME/CFS here> he would be rightly regarded as an idiot and ignored.
 
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Skycloud said:
I wonder what impression is given by this thread
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That's a point too. I actually think that combining all of the threads about Garner, or media that involved Garner, into one big thread is probably not a great look for us.

strategist said:
Did Garner really have such a strange experience? It seems like a fairly ordinary experience of postviral illness. That includes the grasping for straws in the form of quack treatments, and the interpretation that he beat the illness due to moral strength.

If anything is unusual it's a press that is willing to amplify any message, no matter how weird, as long as it comes from a professor of medicine.
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But it was in the context of a global pandemic with a novel virus no-one knew much about, with lock-downs and everything else. I also think that him being so public about what he was going through would have been strange for him, especially as he was on record with claims that he could later be embarrassed by. And on top of that it was getting connected to all the heat and controversy around ME/CFS, touching his social and professional connections, etc. Early on I was thinking that I would not want to be in his position.
 
This comment isn't directed at anyone in particular.

For those who do read this thread and feel judgemental about people, patients, airing their views and how they feel about comments made on twitter that refer to the disease they suffer from, the type of people who get it and so forth.....

I would like to point out most of us don't have any one to talk to in person, be that friend, family or healthcare professional about what decades of this condition is like.

Due to our illness most of us can't cope with the format on twitter and at least some of those who can don't because it's not a great medium to discuss things properly and we don't like the abuse and trolling that goes on generally.

People who post here on this thread are generally obeying our moderated forum rules, don't issue threats and do not attack people personally. If you see something posted that you believe is a personal attack then use the "contact moderators" button.

If you don't like this thread and don't want to read about it then you can opt to ignore it - there's a button on the screen.

Why should housebound, bedbound, socially isolated and stigmatized patients be inhibited from discussing an open twitter feed that discusses them and their illness, so long as that discussion remains within our forum rules?

If Paul Garner doesn't like what happens on twitter he needs to take it up with that platform. If he disagrees with what is said on here no one is stopping from taking it up with us on here. This is a moderated forum and the mods work hard to keep it safe. He won't face personal abuse but his statements and opinions will be open to challenge. Just like the rest of us.

Edit - tried to tidy it up and removed a sentence "let me end with a question" because it didn't end there .:rolleyes:
 
Adrian said:
He doesn't by name but it is implicit in what he is saying wrt the group and therapist in norway as well as some of his comments.
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That he never actually names it is frankly odd. The numerous references made make it clear he's talking about LP. I guess it's too embarrassing to say out loud, hence why most studies only ever talk about "the intervention".

It's a big tell when someone is too embarrassed to even name the thing they are doing.
 
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