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

[MeSci]

Excellent as ever, @Robert 1973.

I'm afraid I don't have the mental energy to contribute, but hopefully some others will.

 

[Jonathan Edwards]

This blog is appalling, @Esther12, Brian Hughes gives a good account.
People die unnecessarily in a daily basis because this sort of loose canon talk is now acceptable in the pages of the BMJ and everyone joins in bullshitting.
The man has a responsibility as a medical authority and particularly as an expert on evidence.
Why have I wasted so much time trying to get to grips with ME if people like this can just lower everything to the level of the pages of a tabloid?

 

[chrisb]

What is the duty of transparency on the part of the author and the journal? On reading the article again it is far from clear the extent to which he has "recovered", the length of time for which he has been "recovered", and the hature and extent of the exercise undertaken to effect the "recovery". On this basis people seem to be encouraged to ignore certain sources of avice. It all seems highly unprincipled and unethical.

 

[dave30th]

We don't know what's going on with Garner and while I think that some of the suspicions people have about the background and intent to his blog may be valid, publicly jumping to those conclusions just seems unfair.

I agree with this part of @Esther12's point. Garner has opened himself up to valid criticism and it's important to publicly rebut strongly his illogical and specious reasoning. I also realize he has made it about himself and he's insulted everyone else, so he's already made it personal. But I'm not sure it helps in return to keep it that personal, to the point of speculating publicly about his motivations and his internal process and other things we don't know about.

 

[Jonathan Edwards]

Perhaps he is describing a new syndrome - we could call it Garner syndrome.

A mind as sensitive to the breeze as thistledown is buffeted hither and thither by the tweeting of social media and the pinging of emails. As a result, symptomometers swing from zero to jangling infinity in some kind of Kafkaesque fairground.

Actually we have all been there. It is just that we cooled off and got some support from loved ones and kept quiet.

Edit: and yes, you are right David.

 

[Barry]

If we hadn't seen a campaign to try to use n=1 anecdotal evidence to replace PACE's collapsed recovery claims, would so many people be interpreting this blog in the way that they are? Would you expect every blog based on a personal story on the BMJ to start with the same clarification?

If there is a non-trivial potential for misrepresentation, even inadvertent, then - yes.

 

[Esther12]

This blog is appalling, @Esther12, Brian Hughes gives a good account.
People die unnecessarily in a daily basis because this sort of loose canon talk is now acceptable in the pages of the BMJ and everyone joins in bullshitting.
The man has a responsibility as a medical authority and particularly as an expert on evidence.
Why have I wasted so much time trying to get to grips with ME if people like this can just lower everything to the level of the pages of a tabloid?

I've not read Brian Hughes' blog yet.

re what's acceptable in the BMJ: I wouldn't put this blog in my top 5 list of rubbish the BMJ has promoted on CFS in the last decade.

re Garner's responsibility: I feel as if all of his blogs have had this sort of personal diary style tone. That just seems to be what they are. It seems likely that he has either been naive or cynical in the way he wrote his most recent blog, and there are ethical problems with either, but it's not that different to what has come before.

At this point, why would anyone expect more from the BMJ than work that's at the level of the pages of a tabloid?

There's good reason to be outraged at the standards of the BMJ, but I think that outrage is far better directed towards things like SMILE than a blog about one academics personal experiences and impressions of suffering from long lasting symptoms are covid.

 

[Trish]

I think there is a big difference between Garner's earlier articles where he described symptoms he and others were experiencing and the help they were getting for managing those symptoms to reduce crashes, and this article where he is claiming he has cured himself using positive thinking.

The earlier ones weren't just about himself, they were about the community effort to support each other and learn to cope, and sources of information and support they were finding valuable. He also looked at the Cochrane review on exercise for CFS and, if I remember correctly, described it as bad science.

This article is all about himself. He is making ridiculously unscientific statements about the effects of 'neural retraining' and happy thoughts on physical symptoms, and an illogical n=1 claim of cure without even mentioning the more likely possibility that he was recovering anyway, as most people in the early months of PVFS do.

And he's doing it in a manner that clearly and overtly dismisses others who haven't been so 'clever' as him at curing ourselves. That is deeply offensive.

Yes, I agree we shouldn't get too personal or try to diagnose his state of mind, and his state of health, nor should we insult him personally, but I think we are completely justified in criticising his action in publishing this article framed in the way he has.

 

[Jonathan Edwards]

There's good reason to be outraged at the standards of the BMJ, but I think that outrage is far better directed towards things like SMILE than a blog about one academics personal experiences and impressions of suffering from long lasting symptoms are covid.

I actually think there is justification for more outrage at smarmy self-satisfied innuendo that does harm than just incompetence that does harm. Nobody is comparing the harm but this sort of pretence that we can dispense with any sort of methodology and just all believe what we want to believe is seriously dangerous.

 

[Kitty]

re Garner's responsibility: I feel as if all of his blogs have had this sort of personal diary style tone. That just seems to be what they are. It seems likely that he has either been naive or cynical in the way he wrote his most recent blog, and there are ethical problems with either, but it's not that different to what has come before.

I've read your thoughts, @Esther12, and normally I might well join you in veering towards the sympathetic view in circumstances like this.

But it's not the other pieces. It's this piece, at this moment in ME history, in this publication.

If he's read and understood as much as he tries to suggest, he should absolutely understand the significance of the moment. Maybe the failure to do so is vanity, or the result of manipulation, or simple lack of intelligence – I don't know. I can't see it the way you do, but do of course respect your point of view.

 

[Kalliope]

Athena Akrami is a neuroscientist at the Sainsbury Wellcome Center, UCL, London from her twitter bio.





ETA: Gerada replied

 

[rvallee]

Athena Akrami is a neuroscientist at the Sainsbury Wellcome Center, UCL, London from her twitter bio.





ETA: Gerada replied

Akrami is also the lead author of the 2nd Body Politic report published a few weeks ago.

Also it's weird seeing this framing from Gerada: "isn't it worrying?". No, it isn't. Why would it? Obviously it worries her as it threatens this power couple's future. That's certainly a worry they have, if it falls apart Wessely maybe wouldn't get his lifetime peerage appointment and obviously their reputation falls apart along with all the perks.

Otherwise it's obviously not worrying to do the first step in understanding a problem: figuring it what is common to it and what isn't. That takes a name. Nothing unimportant has a name, only important things have names. Nameless problems rarely get solved, because without a name no one agrees on what it is.

 

[Woolie]

I believe that we can unwittingly reinforce, as Pavlov has shown, the dysfunctional autonomic tracks in the brain set up by a virus long gone.

NOT what Pavlov has shown at all. Pavlov showed that dogs can salivate to the sound of a bell when the bell is usually paired with food. He had nothing to say about "dysfunctional autonomic tracks in the brain", nor about dysfunctionality at all. Pavlov considered learning to be a normal and adaptive phenomenon.

The idea there can be "bad learning" would be totally foreign to Pavlov. Pigeons can learn pairings and will gradually "unlearn" when whatever pairing they learned no longer holds, slugs can learn and unlearn in the same way. It would make no sense to him that there were humans who could fail at these fundamental skills. Except perhaps if they were in a coma (but even then...)

This statement of is not about the author's experiences, feelings of beliefs, it is presented as fact - but it is hokey pseudoscience.

 

[NelliePledge]

So I suppose a silver lining is that some long covid people will be having their eyes opened to the thinking behind T Greenhalgh and the influence of the likes of Gerada.

 

[Andy]

So I suppose a silver lining is that some long covid people will be having their eyes opened to the thinking behind T Greenhalgh and the influence of the likes off Gerada.

Yep, I agree. Despite all of this being distressing to our patient community, if this was some sort of grand plan to portray us as the bad guys (again) and the BPSers as the heroes, I don't think, overall, it worked and, as you say, will actually have forewarned the LC community.

 

[Robert 1973]

I’ll just leave this here...



And in case it gets deleted, I’ve uploaded a screenshot too.

NB I didn’t threaten to complain to the BBC, I complained to the BBC.

[Edit to add: I wonder how long it will be before she drops the “death threats” bomb.]

 

[Simbindi]

Did the BBC just randomly choose these 2 people to invite on to their news programme to convey their 'personal experience'? Surely not, they must have been selected as perceived 'medical experts' with personal experience of having had Covid-19. She made an emphatic statement that there is no condition exercise doesn't help, speaking as a medical doctor, the ex-chair of the RCGP and the author of the RCGP's e-learning module on CFS/ME!

 

[lunarainbows]

God these people are so clever at twisting the situation into something it never was. It’s like gaslighting, ramped up to 10000. We are not taking issue with her just talking about her own “personal experience”, as she very well knows. She will definitely know that her experience isn’t shared by a lot of people with lingering covid symptoms and can actually cause harm. She would know that as an “authority”, her words can be taken in a stronger way than just a later laypersons experiences. And yet instead of caveating those things as she should have done, instead what she did was use her experience to also say there’s nothing that exercise doesn’t make better. She knows very well what she’s done.

 

[Saz94]

In what way is "there is no condition that exercise doesn't help" talking about your personal experience? FFS

 

[Saz94]

And yes @lunarainbows it's total gaslighting. It makes me so angry