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

Bit late to this thread, but, I think the BBC slot clearly showed that PG wasn't an expert, which is good. And Campbell and his producers will have been able to see that from the reaction of the callers, all of whom did a great job explaining why he was wrong.

I hope he regrets going on there given the polite way he got his arse handed to him - there is no way he can say he was shut down by rabid ill people, he started digging all on his own, hopefully, lesson learned. Guessing he'll be mindful of going on that sort of programme again if there are others able to speak freely against him, rather than simply being brought in as an 'expert'. It may (maybe I'm too optimistic) also help the likes of the BBC question whether he is worth bringing on when many with LC and ME spoke so rationally and articulately.

It feels like some of the arguments he's wheeling out are running out of steam given we have a number of very strong, articulate representatives in amongst other things #ThereForME who cannot easily be dismissed by the BPS mob. If this is all they've got and all they have managed to do post Monbiot article etc. maybe things are not as bleak as things might appear? Fingers crossed.

 

I agree with Hutan that it would be nice to think that but the other speakers were generally not very convincing medically. The BPS approach is not going to be rebutted by shaky science. Winning the argument in the public eye is all very well but if the medical profession is unconvinced things are not going to change much. Most medics listening would think Garner fairly plausible, I fear.

 

I mentioned this in another thread so won't rehash the whole thing. But from what I see in comments on social media of people being gaslighted with "mind-body" BS is that, while some accept it, the vast majority don't just reject it, they know very well they are being told a complete bunch of voodoo nonsense and it makes them instantly lose any trust in the credibility of the health care professional.

It's pretty much common to see threads talking about this where most of the comments are some form of "that physician is an idiot, ignore what they said and find someone who isn't a complete asshat". Whether it's a junior resident or some renowned expert, makes no difference, instant total loss of credibility and respect. Whereas almost everyone respects being told that they don't know. It's the BS that makes people angry. The weird biopsychowoowoo that may as well be the classic "pissing in our legs and telling us it's raining". Almost everyone sees through it. It's so absurd and it's so bad for trust in experts.

 

The bait and switch “no we don’t think it’s purely psychological, it’s very real…because you manifest it into real symptoms- with your thoughts” is starting to grate.

 

I don't know.

 

He asked me to give a talk on zoom to his research group about the awfulness of the PACE trial, which I did. I didn't force myself on him. By the next month, he had "cured" himself with his powerful manly thoughts and I guess I had become PACE-critica-non-grata--cancelled by him. Maybe it was something that happened to his brain under the water pressure from all that scuba-diving?

 

Whatever feelings one has about the MEA, I wouldn't blame them or CS for this. Perhaps in retrospect profiling him turned out to be a "mistake," in the sense of unhelpful, but no one could possibly have known at the time that he would turn around like he did.

 

I respect doctors who admit they don't know. It's frustrating at first but it helps build trust that they're not going to be trying unproven treatments on me or see things that aren't there. My illness has never been questioned as psychological so that helped too.

 

Sometimes the issue of "recovery" from ME/LC reminds me of the conversion therapy issue and claims of "recovery" from homosexuality. It is of course possible for gays to change their behavior and "perform" as straight men. (Excuse me for focusing on males; I think some of the issues are generally different for women, in terms of sexual fluidity etc--at least that's been my impresison in talking to many, many people over the years about their experiences of recognizing or acting upon same-sex attractions.) That doesn't mean their underlying "condition"--ie sexual attraction to men--has changed one iota.

So drawing out the analogy, it's easy to understand doing some CBT or the Lightning Procesa and performing full recovery, as they've now been trained to do. (In Garner's case, it seems likely he had a self-resolving post-viral case, so doesn't really apply here.) It doesn't mean the underlying condition--in this case, not same-sex attraction but whatever mechanisms are causing the illness--have been touched in any way. And at some point, despite their strenuous efforts to perform recovery, it could all break down.

 

Which is pretty much what happened to me and others who did the CBTwith GET, at some point I got a bit better, then it was a steady decline into a massive crash.
(I didn’t do much GET but I think we need a way to specify the special kind of CBT which went alongside it aka “just keep pushing”) I didn’t think it had particularly worked, but I was better for a time and then I pushed on until I could push no more. Which I think is similar to the conversion analogy, you can know deep down it didn’t work, you can get some benefits from it “appearing to have worked” but ultimately it all comes tumbling down because it’s not worked.

 

Fascinating isn’t it. Would make a great psychological discussion.

 

There's also the possibility that it was a lie all along, was planned this way. Garner's stories have enough holes and oddities that it is a possibility. It sure fits the kind of tactics psychosomatic ideologues are willing to do. I normally don't go there, have not for anyone else, but there are very odd things he said that either fit this scenario. In addition to the whole "I can run 5km fine, no PEM, I just wonder about when I can let go of this fear and improve my performance". He's had several exchanges like this with people who later shared them. They are all odd.

There's bits and pieces that keep tripping my BS detector. One was an odd public comment he wrote about pacing, was talking about how someone had proved it, proved it!, and that this knowledge should be spread everywhere as fast as possible. It's more than this one, but it struck with me. He was a professor of clinical evidence. Regardless of his behavior since, I've never seen anyone talk about pacing or PEM this way before, showing so much puppy dog eagerness. He worked for Cochrane. His every instinct should be more measured about these things. And I've never seen anyone before or since talk about pacing like this, as if it's an effective treatment.

The thing is that Garner's behavior since then only reinforces that. He is behaving like the kind of person who would do such a thing. And he is working with people who have said and done more shady things to get their way. Without this I wouldn't think much of it. Most of the others selling their BS? Their Youtube coaching or jewelry? Whatever. Fits the usual natural recovery picture to me. Lots of people believe the same about drinking their own pee. Humans are weird as hell. But Garner's is suspicious enough that I'd rate it as half likely to have been a planned operation all along. After all, building trust in order to betray it is basically the core of the conversion deprogramming models.

Other hardcore BPS proponents I believe. Like Vogt and others. They went through something and it scared them, the problem went away and they decided to attribute to something they felt gave them control over their health. Whatever. Garner is the only story I have seen with too many holes in it that, in combination with awful behavior, I don't feel bad about suggesting is actually likely a giant con from the start. More importantly, he has not behaved since in a way that even suggests otherwise.

 

"The story was very similar: no previous illness, no psychological problems, only long-lasting debilitating symptoms after an infection. I was asked, “are you open to the idea that you can have an impact on your symptoms with your conscious mind?” I thought back to an earlier experience in my 30s with being able regulate my tinnitus after quinine, and said yes, straight away"

Is PG saying here that he also used his mind to cure his tinnitus from taking quinine?

There are apps (Mindear) that provide relief by using CBT, mindfulness and relaxation for tinnitus. This might be part of the reason why he believes so strongly in the power of his mind.

 

A dose of the bends maybe?
He might even have been talking to Jessica Eccles https://x.com/BendyBrain .

 

The self-resolving nature doesn't seem to be covered nearly well enough in discussions like this. It's one of the areas doctors could talk about with real confidence, instead of theories about clots.

About how some infections can involve an extended recovery period in some cases. About how careful we need to be about looking for explanations of recoveries, when they may be part of the natural illness course. About how we don't understand yet why symptoms don't resolve in some people, and what a challenge that is. And about the whole slippery topic of hypotheses, research findings, and weighing evidence, with which they could fill a six-part documentary series, never mind an interview.

 

@24:00 They keep repeating the same lie about not saying the symptoms aren't real.

 

In many respects MEA has been criticised for being too conservative (small c, not the party political kind) in their approach as a charity. People with ME would have liked them to be more forceful. The positive about the conservative approach is the lower risk strategy. But it seems the cautious approach doesn’t extend to every aspect of the project.

I was as thrilled as anyone that someone from Cochran crew was admitting, all be it in light of personal misfortune, that BPS ‘think yourself well’ ‘push through the exertion’ etc was not going to be the best strategy for them for recovery. From an infection with a virus particularly a very dangerous novel pathogen.

It’s true things could have gone another way following this U turn, another may not have followed soon after. Even expecting that it would, it would have been hard to predict anyone would take this reversion to type quite as far as PG has.

My objection is to publishing of a very prominent feature in an ME advocacy magazine of someone who had occupied a position of power, and had during this professional career been part of an organisation that hadn’t just done damage but was still causing damage to the lives of people with ME, mere months after this person had seemed to of changed their mind in this issue.

But as it happens also, it’s not the case that no one could foresee potential problems with PG, because people with ME of long duration had expressed their concern some on Twitter, one person I remember said to paraphrase somethings like, this is great but I can’t trust some from Cochran so quickly especially when they’ve only changed their mind over getting ill themselves, and that there worried about advocates investing so much hope and effort on him. A few other people said they wouldn’t trust him as far as they could throw him. This is more hazy so I can’t remember even approximately how people said this but I think it was quite a few people who said that they expected that he would recover, and they wished him well but weren’t sure if is change of attitude would survive recovery.


Still it’s doesn’t so much matter whether anyone predicted that his would return to form plus some or not. That was predictable, at least as a possibility, but it’s not the most relevant thing about the decision to profile him so soon.

Most relevant was a lack of caution and patience waiting to see which way he would go, after hopefully recovering. PG was still unwell earlier days unwell, and no one could know for sure where he would go on this one.

I am not blaming CS for failure to look into the future I am saying we people with ME could have done with not having one of our old foe given a pride of place big spead all over our miserable magazine just because he happened to find out his own body was actually not exempt from lingering COVID-19 symptoms.

It’s just not good enough. Wait until he’s either ill enough to have to be all in for his own good or happily recovered and holding charity events on our behalf because he’s a good egg and not all about himself. Or even just quietly getting on with his life and not publicly denigrating ME on the regular.

To be fair to PJ by his own account given at the time and since, he wasn’t feeling okay emotionally or in this thoughts post Covid, it’s known to cause serious psychiatric in some patients and mood issues for many or most, so I don’t know if it was fair even to host an interview him then. Mind you I’ll admit it might have been hard not to, he seemed to be seeking out opportunities for public attention then as now.

I would not be looking at this situation so unfavourably if it wasn’t for the fact that I don’t quite feel like it was a one off. One of those things mistakes that can just happen, much as it may look like that at first glance.

The reason I get so frustrated about this stuff is that MEA has a lot to offer CS in particular. The fact sheet resources are outstanding and CS always goes to great levels to be accurate and also to do the hard work of attempting to build bridges with people who are not easy to deal with. Because of this no matter how many times I get burnt, I can’t seem to help but put some level of trust into MEA, what that means is feeling disappointed and frustrated at pretty regular intervals because there are other aspects to MEA too.

I see the connection to PG as part of a continuum of the MEA connection to Peter Gladwell(?) and Sarah Tyson. Ordinary people with ME seem to much harder time getting the attention and having influence over MEA than do professionals with a somewhat chequered history and or present in relation to people ME and our welfare.


I don’t criticise CS for making a mistake it’s impossible not to make mistakes, I can’t get through a single day without making many. Even with a team in the context of work rather than individual life people can’t avoid all mistakes.

What I do resent is that professional people who have harmed us in the course of their professions get a louder voice in MEA than the people who have been harmed do. I am viewing this incident in context and not in isolation. There it seems more like a choice than a mistake.