Surely the arrows are better placed like this. (Yellow arrows added)
Or maybe their final image should be at the start as leading to everything else and the Reduced Activity is the final Outcome
Yes, it's the assumed causality that troubles me, and the implicit failure to listen to patients...
First, the stats suggest many of the findings are iffy (though of course there is the problem of teeny sample size meaning true effects will be missed). But if we accept them as real signals, are they specific to ME or a generic chronic illness signal, particularly a chronic exhausting/PEM...
I hadn’t notice that: this is classic “ME is the result of deconditioning“. it shows the authors haven’t grasped the importance of post-exertional malaise.
ADDED
Or put another way, why doesn't every other limiting condition cause a syndrome similar to ME, complete with PEM. Why doesn't MS have...
Thanks. I guess regardless of its purpose, the battery of testing is also likely to be more challenging for PwME than for healthy volunteers, which might well add to the stress.
So the autonomic functioning element looks a miss and physical conditioning probably applies to most chronic illnesses...
Autonomic dysfunction in ME/CFS
Tilt table testing found no POTS or OI differences with controls. However, they also found reduced baroslope, which I think means that regulation of blood pressure when it changes is slower than optimal.
A wearable 24-hour ECG showed reduced heart rate...
"exposure of brain endothelial cells to serum from patients with long COVID induced expression of inflammatory marker"
Interesting, though I couldn't see the relevant figure (happy to look if someone points me to it).
Going back to the idea of effort preference, are the reported differences trustworthy? I've not read the paper yet (it's ***ing huge), but these criticisms look significant:
@chillier was commenting on the fMRI data of participants doing repeated hand-grip tests, and pointing out that the...
Credible mechanism for how 'effort preference' issues could explain PEM & relapses?
I queried how simply pushing overriding 'effort preference' could explain both PEM and relapses, where it seems (particularly for relapses) our body behaves as it is broken (e.g. legs giving way), as opposed to...
For this to be credible, we need an explanation for PEM and relapses. If our body was fine and the problem is with effort preference (or even central perception), why if we choose to do stuff regardless:
1. We get PEM - is that then purely a brain phenomenon (this is possible)?
2. We get...
A muted response from Chris to Science Media Centre
Prof Chris Ponting, Chair of Medical Bioinformatics, University of Edinburgh, said:
“This long-awaited publication describes results from an exploratory study of 17 people with post-infection ME/CFS who match by age, sex and body mass index...
A rather poor New Scientist piece:
https://www.newscientist.com/article/2416283-exercise-programme-helps-people-with-long-covid-but-its-no-panacea/
Concluding
On the other hand, it is the first time a randomised trial – the best medical evidence – has shown anything to have even a modest...
If we look at MS - a widely used comparator to ME - about half of people with MS report sleep problems. In other words, lots of people have MS without having sleep problems, so it would not be a good mandatory symptom for MS.
DecodeME did not require any specific case definition to be met -...
Yes, the comparison with other illnesses would be very interesting.
However -
1. Clinicians who came up with these definitions are presumably familiar with other chronic illnesses, yet still felt NRS stood out for ME.
2. The initial DecodeME study found NRS was reported by almost all of the...
Which aligns very closely with the Institute of Medicine case definition (I think the only difference is that this allows orthostatic issues in place of cognitive ones). For reasons I never understood, Lenny Jason vociferously opposed this. Which might be why the abstract talks up the ICC and...
I did wonder about that, but I don’t think you pursue an NIH grant for a dead duck. And it
does seems to have come down to the fact that RE no longer wanted to pursue the work, and he was the expert,
as for “too good to be true “– I completely agree. All the more reason for replication,
A few thoughts
I don't understand why tenure was quite so big an issue. Every academic wants tenure as it gives them security for the rest of their career. But I think it's unusual to get it very early on, and not getting it quickly doesn't cost you your job - you just don't have job security...
The studies were of viruses in either serum or plasma and didn't look at PBMCs (though you might expect infected PBMCs to shed viruses if the viruses were active) or other possible body reservoirs. Ideally, you would at least look for viruses in PBMCs.
Sorry, no idea about peptides or the...
Barbara Stussman of NINDS had previously published an underwhelming Focus group-type study of PEM, though maybe this one - which seems more useful - is part of the same study.
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