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

[MrMagoo]

I think the issue is the unfalsifiable argument, isn’t it?

Garner and the BR lobby say that BR works because people get better, but correlation is not causation. We don’t know if they would have got better anyway.

It’s the same with convalescence unfortunately.

I think it’s the wrong argument to make, that appropriate rest can avoid or cure ME, as that’s an unfalsifiable argument too.

It’s safer to be more nuanced than that. Appropriate prolonged rest aka convalescence may, it appears, prevent ME increasing in severity.

I think that comes down to what we already know through experience - rationing activity, managing energy seems to be the best and only way to prevent deterioration (although this is no guarantee).

So, it follows that carefully managing energy use right from the earliest point you can, is helpful.

And conversely, because “the norm” in society and medicine is “have a few days/weeks rest then don’t get deconditioned lying in bed all day like a lazy teenager” people at the start (or “assumed/known” start) of ME are so rarely encouraged or supported to convalesce for a prolonged period, and regularly encouraged to push through and return to normal.

That links to the point about the societal changes in the last 40/50 years, including neo-liberalism as @Sean said.

Although a flaw in the BR campaign is that if you look closely, they redefine “recover” to mean “improved” and a spot check on Raelan’s recovery people’s social media by @Joni showed many being unwell again a year or so later anyways.

 

[rvallee]

In some way, we have to appreciate the likes of Garner making it loud and clear that they don't care about validity or how science actually works. This is the more extreme version of cherry-picking, presented as being remarkably similar, about something that has the exact same evidence base as the healing power of prayer. It's completely absurd how none of their peers or institutions mind it, but it makes their guilt and complicity loud and clear as well.

It won't be especially hard to argue that these people are proper mad. There is no way they don't understand how this not how any of this works, which makes it all look so much worse. Everything they do has been calculated and premeditated. Not that experts deserve to ever use the incompetence excuse, but they're just so loud about it that it makes the future cases that much easier.

It's a bit like famous scene in A few good men, when Jack Nicholson's character screams how of course he knew!, he does things like this every day!, except doing it all in advance, without even being forced into confessing, because they're bragging. Like tobacco companies paying for marketing material to advertise their product as both addictive and deadly, as a good thing, a gold mine ready to exploit from several angles.

 

[Tom Hill]

Even 35yrs after PVFS/ME onset I'm still able to run 6km if I wanted to but of course I wouldn't do that.

This is the point I keep pressing on my friends who persist in suggesting maybe my problem is related to deconditioning: I know for sure could also go run 6k right now. That’s not the problem. The problem will be the enormous price I pay later.

 

[Tom Hill]

that appropriate rest can avoid or cure ME as that’s an unfalsifiable argument,too.

It’s falsifiable, surely? There’s the possibility of data which would falsify this, I would have thought.

 

[MrMagoo]

L

It’s falsifiable, surely? There’s the possibility of data which would falsify this, I would have thought.

am no scientist, but my understanding is there’s no good/relaible data in existence which shows groups with ME who rest early do better compared to those who don’t.

There’s plenty of anecdotal evidence - which is the same for brain retraining. Making both claims of recovery from the method unfalsifiable at present, no?

If someone sets up some long-range 10+ years studies (of brain training recovery or of convalescence in early stages of ME) then we would know.

ETA willing to be told Ive got the wrong end of the stick or misunderstood the situation, it’s totally possible.

 

[Mij]

This is the point I keep pressing on my friends who persist in suggesting maybe my problem is related to deconditioning: I know for sure could also go run 6k right now. That’s not the problem.

I can still power walk for an hour 2-3 times a week when I'm feeling "better". I don't experience delayed PEM or PEM the next day, in fact I haven't had delayed PEM in the last 8-9 years because I know my energy limit and plan my day before hand. Pacing is the key.

Lifting light weights, planking and non-aerobic type exercises in moderation has helped build muscle in my arms. I can not do resistant leg exercises, like riding a bike with resistance. The larger muscles are more affected.

People don't understand delayed PEM unless they've experienced it for themselves.

 

[Tom Hill]

L

am no scientist, but my understanding is there’s no good/relaible data in existence which shows groups with ME who rest early do better compared to those who don’t.

There’s plenty of anecdotal evidence - which is the same for brain retraining. Making both claims of recovery from the method unfalsifiable at present, no?

If someone sets up some long-range 10+ years studies (of brain training recovery or of convalescence in early stages of ME) then we would know.

ETA willing to be told Ive got the wrong end of the stick or misunderstood the situation, it’s totally possible.

My understanding of the concept of something being unfalsifiable (may be wrong, y’all) is that the claim is theoretically beyond all falsifiability - like believing in God. So it falls outside the bounds of scientific rigour. But there are lots of things we don’t yet have data for which can be falsified if we apply the right experiment or trial, so they are falsifiable. We just need to do the damn trial and in the right way.

 

[Tom Hill]

can still power walk for an hour 2-3 times a week when I'm feeling "better". I don't experience delayed PEM or PEM the next day, in fact I haven't had delayed PEM in the last 8-9 years because I know my energy limit and plan my day before hand. Pacing is the key

I used to think it would be such a shame to be stuck with this sort of ceiling. Now it sounds like heaven to me. Would be nice if physicians generally understood ME/CFS better and could advise patients on these considerations from the beginning. That would be a huge improvement all on its own.

 

[Mij]

My ME doctor with 25yrs experience who co- authored a draft document. the diagnosis of ME/CFS, told me to do nothing in 1992. He never mentioned delayed PEM though, but that term wasn't used back then. I wish he would have explained it to me before I started running again, but I most likely wouldn't have believed him anyways? It's too bizarre, do nothing, feel better, and continue doing nothing?

 

[MrMagoo]

My understanding of the concept of something being unfalsifiable (may be wrong, y’all) is that the claim is theoretically beyond all falsifiability - like believing in God. So it falls outside the bounds of scientific rigour. But there are lots of things we don’t yet have data for which can be falsified if we apply the right experiment or trial, so they are falsifiable. We just need to do the damn trial and in the right way.

Ok so is it just unproven/untested and also incapable of being rigourously tested at this time, rather than unfalsifiable?

 

[Tom Hill]

Ok so is it just unproven/untested and also incapable of being rigourously tested at this time, rather than unfalsifiable?

I think so. Where BPS and stuff like that can start to veer into unfalsifiability, I think, is when the advocates start claiming endlessly that the people who tried it and don’t get better just didn’t do it in the right way, and so on and so on, and then they start building an argument with so many defences that it starts to look unfalsifiable.

 

[NelliePledge]

My current speculative pet theory (based on the Idio Sen hypothesis of the role of immune threshold tuning being the mechanism for recovery) is that you’d need 3-6 months forced rest, then 3-6 months careful pacing, all at the beginning of the condition. That with this you’d get higher rates of recovery. Easier to apply to teenagers. Much harder for adults with myriad iron-clad responsibilities, especially if you start out mild and think you can weather it.

Even more so if you start out mild and are undiagnosed for a long period because you and Drs don’t realise…..

 

[bicentennial]

I remember in the 1970s there were still at least some NHS convalescence hospitals in the UK.

And it was rumoured that there were Rest Homes somewhere. I suppose these were seen as a relic from the times of polio and TB. Maybe the Rest Homes were eradicated with the polio and the TB. Then, in many situations, people were not given time enough to re-constitute, and it seemed more profitable to make less staff do more work. Past the peak.

Epidemiology can tell one exactly where the money is.

Weird. Is it the academic culture or the NHS culture for highly paid professionals like Professors to serve with uttered dedication, not for progfit part-time, and take on commercial work.

I understand that there are responsible financial commitments beyond my own reach, but how many do this only to secure a bigger pension, overspend, run up more unaffordable debt, retire, pay bits off, and set up unsustainable internet academies at the earliest opportunity, while unfit to communicate and co-operate.

I am minded of my complaint that if you want to explain and treat a pathological state it is no good trying to gto apply the rules of normality.

If anyone can explain Dr Garner's social media posts with the normal rules of psychology supposedly so good at curing ME/CFS I'd be gald to hear of it.

Dr Garner, give me fish I can't eat or give me a fishing rod so I can go fishing. Are you serious? You cannot revive physiognomy based on an appearance. Even the other Professors say its a pseudoscience, so now they call it "more of an art than a science but a very attractive idea" (SW).

And it won't work based on profiling to re-construct an appearance in the virtual reality of your medical software device. Is it registered for Europe? Or did you skim your patient validations from social media presentations.

I wish you would talk epidemiology with us. What they don't know can't harm them. Do as you would be done by. Believe in me and ye shall be healed. Take up your bed and walk.

 

[bicentennial]

Personally I believe strongly in the power of convalescence, it just takes ages for the resets to kick in, then some convalescing can begin. It is not recovery but it is a vast relief and scope comes back online. Several systems work on the same principle if not overloaded.