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

Strange, that. PG does not demur in any way from the statement that he is an expert. I thought he said early on that he knew nothing about ME. How can you claim to be an expert in the field yet know nothing about medium and long term sequelae of infection?

 

Sorry typing very limited. I accept she had abuse then from the mask/Covid deniers around that time but on the Monday TG had also shared Garner’s blog post saying was interesting, perhaps indicated a GET trial was needed. The next day she used a block chain app. With so many people with ME blocked she must have programmed words to do with ME into the blockchain as well as probably Covid/mask deniers.

 

Frances Ryan has said this before too that you need 'COMPLETE REST' without making it clear it is not complete bedrest without moving a muscle unless that is all you can do, but pacing self, listening to body, not pushing self.

 

Thanks for all those links Trish. I'm sure I added links when I was writing that long post, but they all seem to have disappeared. I added in the WHO one, but bumped up against the forum's limit for post length when I tried to add those others too.

I've still found that when feeling ill, even with a relatively short but bad stomach bug, it can be like having a different personality, and it's almost difficult to remember that when recovered. My ignorant speculations are that most people can have an exaggerated view of how fixed our own personalities are when the way we think about things is so shaped by our own opportunities, experiences, etc.

'Brain-washing' sounds like something cunningly imposed on someone through extreme measures, like in some cold-war propaganda story. Your more prosaic description of it just being an appealing narrative is closer to what I think. Also, I think it's a bad idea to present Garner's story as particularly remarkable. Of all the people coming down with Covid suffering from post-viral symptoms and then going on to recover, I expect that there will be a lot more stories like this even if we were to assume that 'psychosocial' factors played no significant role in which people recover. It seems that lots of people like imagining that they know more about their health than they do, and have more control over their lives than they do.

And 'psychosocial' factors may be significant for some, and Garner's new understanding of his health problems may be largely valid. Maybe he was misrepresenting things in his earlier blogs? If there is any truth for anyone in theories about fear-anxiety style cognitive perpetuating factors, then Garner seemed to end up in a position that would exaggerate those problems. Being a public advocate for 'long-covid' when no-one knew anything about it and when having to deal with ones own new health problems always seemed like a big strain to me and I was worried that he was taking on things that might make it more difficult to naturally recover (this was just more ignorant speculations, and my thinking about what I'd want if I was in his position).

When I was first ill I was completely stupid, and just trusting what my doctors told me about GET and recovery. If I'd been writing blogs back then I'm sure they'd be pure cringe to read now.

 

"I've learnt a lot about my own body and about how to recover and like Clare, like the importance of gentle exercise and positive thinking to take you forward out of it..............."

Gave me a laugh!

What follows is pretty good too i.e. funny/hilarious.

Maybe congratulate the interviewer!

@Sly Saint

 

So a lot of people (including professionals) are still unaware that it was CG herself (not her husband) who authored the e-training on CFS/ME for the RCGPs, and that her statements on exercise couldn't possibly be an 'enthusiastic slip of the tongue'.

 

I didn't know that. You mean METRIC?

 

She did the videos for it, along with Chew-Graham, so was fully involved in it's development. Someone put the relevant clip up on the Twitter thread.

 

Oh yes. I think that was originally from an older training video, that then got re-used as a part of METRIC.

Here was an old thread on them: https://forums.phoenixrising.me/thr...sh-gps-on-how-to-deal-with-cfs-patients.3079/

Looks like the original video is available here:

https://www.youtube.com/watch?v=sPpWr5BbwME

 

I'm glad PG's better, and really hope it's true he is, and it's not just the LP tell everyone you're better / fake it till you make it... And while i do think he bears some responsability for what he posted, and I was very hurt by what he wrote, I also think the BMJ bear responsability as well. PG has had an increadibly traumatic experience this year, as many of us have also experienced when we first got sick- the illness is horrific, and it is terrifying, exhausing, confusing. Constantly confronted by Medics who not only don't know how to help you, but don't even want to try, and who are often abusive as they dismiss you. And for him, with the added stress of his illness being part of a global pandemic, scenes of folks in ICU, 100,000 dead already, knowing that could have been him.

In a best case scenario where the BMJ is an instituation that acts with integrity ( bear with me...), they had a duty of care to PG. If I was an editor reading this for the first time, i'd be asking very specifically what had caused this complete change (in his health, in how he writes and in how he presents himself), and when he explained about LP etc... as a scientist, i'd be really very concerned for PG. His welfare and health should trump having an article to put on my website.

In the real world, we know BMJ is ethically challenged in too many other things. We know they know the history of ME, PACE, GET and know all about what LP really is. They wouldn't even have had to ask. It looks like they threw PG under the bus: all for ratings and page clicks and furthering their agenda. win - win for BMJ, but what about PG? After the backlash, are they supporting him now? (Not that that would be a good thing in reality... I hope he has some good friends or family who will hold him through this thing he's stumbled into.)

I agree with most of the comments made on what he wrote, and don't have any issue with him being challenged on science and theory, which is what the majority are. But, also, at the same time, he's been through a genuinely traumatising situation. I'm not saying people who've experienced trauma shouldn't write or be published, just that there surely has to be a duty of care from anyone benefiting from his stories of trauma. No?

 

Yes this!

Like childbirth, the experience of illness is so quickly lost and so hard to recall once we feel better... I've always had a extreme relapsing-remitting pattern, a cyclic series of forgetting-then-remembering events. Not just the awfulness of the physical sensations, but the whole perspective you have in that situation. When you're in remission, its like the whole thing never happened.

 

Clare Gerada has just been on BBC news channel again. Thankfully nothing about long covid or ME, just about a technological development, an app attached to a camera on an iphone to monitor basic obs- to replace a live consult with a GP. She was there to discuss its uses.

I think they repeat the clip each hour- about 46 minutes past the hour. I saw it an hour ago out of the corner of my eye then it was just repeated.

Very popular GP with the BBC.

 

No-one would want to meet a new partner's friends/family for the first time when feeling ill. Less likely to seem effervescent.

 

I think this is pretty much what I was trying to get at with my comments in #332:

 

I wrote about METRIC and Chew-Graham but did not realize this.

 

To give him the benefit of the doubt on this specific point, when you're in a live situation like that and preparing to answer questions, it's often very easy not to notice what the moderator is saying or how you're being introduced. I can very easily empathize with that.

 

The use of those old videos might not mean that Gerada was involved in other aspects of METRIC. I couldn't see her name attached to the project in other ways (but might well have missed something).

 

Either way, she was chair of the RCGP when the training was developed 2010-13, so cannot claim to not be involved in promoting it.