Prevalence and predictors of long COVID among non-hospitalised adolescents and young adults: a prospective controlled cohort study, 2022, Wyller et al

"seems to work."

And the evidence for that is...?

 

To @Holinger's good point about the oddness of Lloyd suggesting that psychological factors aren't risks for onset:
Around 10:20 minute mark:

Interviewer: Do we know what causes CFS Andrew?
Lloyd: Yes, we know some things.

What we know is that the only recognised trigger for the onset, and part of the reason it's something that I have, ah an interest, a clinical and research interest in the disorder, is that it's infectious diseases, and what I mean by that, is a whole range of acute, predominantly viral, infections are well documented to be the trigger for the onset of the condition. There's a reasonably well known study that I conducted here in Australia called the Dubbo Infection Outcomes Study which identified that glandular fever, caused by Epstein-Barr virus; Ross River Fever, a mosquito-borne infection, causes rash and arthritis; and actually a bacterial infection called Q-fever, caught from cattle and sheep in particular, common in the bush, haha, those three, each of those three is actually a trigger for the onset of a subsequent, what we might call a post-infective fatigue syndrome. When we evaluate patients after six months of ongoing symptoms, about one in ten of the original group with the acute infection will still be crook with what would be diagnosed as a chronic fatigue syndrome or a post-infectious fatigue syndrome.
Interviewer: wow

Lloyd: As it turns out, turns out there's a range of other acute infections that are, not quite so systematically, but have been closely linked to the onset, so everything from influenza, to even leptospirosis is another, so there is a range of infections, and their, their commonality is that they all have a propensity to cause pretty severe, you know reasonably significant, acute illness. Not just a cough or a cold or a bit of gastro or something like that but more substantive acute infections.

Interviewer: I'm guessing it's too early to suggest a link between Covid and CFS?
Lloyd: Umm, I hate to say it haha, but it wouldn't surprise me because Covid falls into that category, at last in some patients, a pretty significant illness.
It plausibly will be.
Interviewer: Oh, gee
Lloyd: And so we need a prospective cohort study to tidy up and resolve whether that is indeed a significant outcome.

One other thing to say, Cate, about the triggers for onset, or the causative factors, is that, umm, there really isn't good systematic evidence to implicate anything else. There's a, especially amongst the lay community, there's sometimes a notion that people who are, how to describe this, 'psychologically vulnerable' you know, who have a predisposition to mood disorder genetically or from their family background. That's, in that Dubbo Study, not a risk factor for onset. Life stresses, you know, so if you are busy as hell at work, or you know you are bringing in the wheat crop for 24 hours a day for days on end, none of that is a risk factor for onset. Nothing else has been clearly implicated to be associated with the onset of the disorder.​

It's very odd, there was that 2019 study Lloyd did with Cvejic that tried to suggest that neuroticism was a factor for onset in the Dubbo study (even though the data didn't support the idea).

 

and I'm yelling back - of course I've tried exercising my way out of this! It was the first thing I did. And it just consistently made things worse. And yes, for many of the 10 years I've had this illness, I've walked the dog each day, more than walking around the block. But, I'm still sick. As soon as I go over whatever my threshold is, I'm in a world of pain and exhaustion, sometimes for days.

It's the arrogance of it, when patients, when patient organisations, many clinicians are all saying 'no, exercise doesn't work'. Surely if it worked, there wouldn't be all the opposition - it's arrogant to assume that we are all so hopeless that we would rather stay sick for decades than just walk around the block a bit more.

And yes, there's no evidence for exercise even helping, let alone being curative, NICE couldn't find any evidence. What is the block in this man's mind that he can't see that? Other than, I suppose, a career of telling people that exercise works, a fatigue clinic associated with him that pushes that idea, a whole lot of friends that create a bubble of BPS thinking impervious to reality?

I think he talks about graded exercise training and cognitive exercise training - the latter being "graded exercise for the brain" - so I think he sees the CET as different to CBT. He sees the GET and CET as 'desensitisation paradigms' - because the brain has somehow become too sensitive. He does talk about a package of CBT and GET as being just being management but then suggests that it will gradually improve function. So yes, it is muddled.

He talks about his efforts to educate allied health professionals about his CBT, GET programme - it works, but it's not curative, he says, there's plenty of room for improvement. He mentions that drugs that act on the brain that might help with the desensitisation programmes - I presume he means stimulants but he doesn't say, to modify the exacerbation of fatigue after exercise, 'to help us move forward with our desensitisation programmes more actively and efficiently'.

Another bit that was really bizarre and awful from about 28 minutes:
Lloyd: Perhaps the only other thing, it's a sort of sociopolitical comment.
Interviewer: Go for it
Lloyd: And that is, I think, for better or worse, I think we have to recognise that there is controversy and how the medical community responds. You probably know this, but it was a patient consumer group who lobbied the NHMRC to set up an expert advisory committee and then report to the CEO about what they, I think, rightly perceived as inadequate health service delivery and inadequate biomedical research for this condition in Australia, so that happened last year. And in response to that expert advisory committee, umm, the CEO has put out a targeted call for research, put forward some funds to support Australian research and has also prioritised some of those things that I mentioned like education, but also has prioritised a health economics study to understand how big a cost this is to the community. It would be fair to say though, in that process, it has become, if it wasn't already, pretty apparent that there are, umm, members of the consumer community that, umm, ah, feel not well looked after by the health services and are moving to rather alternative realms, and, as in non-evidence based treatments, and also are very actively critical, not necessarily in a rational sense, but are actively critical of some of the mainstream services and the research programmes. And so, for better or for worse, I think we have to recognise that that is part of the community's response. Something akin to climate change denial versus acceptance. So we have to recognise that and respond as well as we can to that as a scientific medical community.

It is with some satisfaction that I note that Lloyd's group didn't get any of the research funding that he mentioned was being distributed in 2020.

Hmm, maybe Professor Lloyd, people in glasshouses shouldn't throw stones?
(crossposted with Sid)

 

That's quite a helpful article, given it's in the BMJ. Lloyd though seems unreasonably certain about the cause.

Annoying too that he, and some others, throw 'irritability' in there. How do you measure irritability exactly? If Professor Lloyd suddenly lost his career and capacity to earn income, and didn't have enough energy to do the things he wanted, and if people around him were suggesting he was just not trying hard enough to be better, and his doctors told him 'there's nothing wrong with you!', and if the media was suggesting 'these people are irritable', not to mention aggressive to the nice researchers trying to help them, then I wonder if he himself might occasionally be a little grumpy and frustrated. Branding that natural reaction as a core symptom seems like a great way to suggest that any anger we have can safely be ignored as the construct of unwell and unstable minds, a lot like 'oh, it must just be her time of the month'.

 

I have probably contributed to a misunderstanding about the 'yelling'. I started writing my response before I had heard the context of his 'yelling' comment. He was actually meaning, I think, 'if I yelled at a patient to move, if I really required them to move, they could. So, it's not that their body is incapable of moving. It's just that their mind is telling them not to.' He wasn't meaning 'I yell at my patients to move, for their own good, and they don't. The bastards just don't want to get better'. It was all part of his explanation that it's a central nervous system signalling problem.

But yes, he totally seems to miss the point that part of the reason we don't move sometimes is because if we do, we know we will be stuck in the hell of PEM for longer. And he misses the point that lots of us have tried ignoring the signals to lie down, and have pushed through, and it ends up very badly indeed. In my case, I think of my son who tried to attend a school he really wanted to be at, and played sport he really wanted to play, and ended up asleep for 20 hours a day and zombie-like for the remaining four hours a day, having to be helped to the toilet and otherwise bedridden, for a month, and only gradually coming back to his baseline over a year. I don't think, even with the strongest will in the world, he could have been awake much more or moved much more than he did. I know that, because I was the one trying to keep him awake long enough to get enough water and food into him to keep him alive, and it wasn't easy*. I suspect that shutting down is a very strong protective response, stopping more activity and giving the body time to get back to a healthier state.

I find the idea that Lloyd and his team want to experiment with stimulants to override that protective response very concerning.

*edit (With hindsight, my son should have been in a hospital on an IV-line, and I wonder why on earth I didn't get a doctor to see him, but I was sick and I had a daughter who was sick. By that time we had all lost confidence in doctors. We had strongly been given the message that doctors weren't interested or able to help. That time is just a blur of trying to get through it.)

There was a video where Lloyd had a few graduates of his Fatigue Clinic give endorsements, and it was quite telling how they talked more about having learned to live with their symptoms, rather than being symptom-free. It's covered in a thread here somewhere I think. If not, it must be on PR. I was surprised that he couldn't find people to give more convincing endorsements, as I know, from the experience of seeing my daughter recover over two years (with no particular interventions) that there are people who recover naturally and who therefore could be convinced that a Fatigue Clinic was instrumental in that recovery.

 

Lloyd is concerned only with protecting his lucrative psycho-behavioural based clinic, and extending its, um, client base to Long Covid patients.

There really isn't much more to it than that.

His 2020 claim about patient critics being akin to climate deniers has not aged well in light of NICE's 2021 assessment of the evidence being of mostly very low quality, and the remainder of low quality. Which is another way of saying those critics were correct.