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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 -...

That's a good point and a great idea. It also shouldn't be too hard to do. Ideally looking at prevalence in both healthy and sick comparisons.

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.

Yes, especially for Bath and Bristol. I’m sure the local presence of Action for. ME is fact as well.

Does anyone know why the areas with the highest prevalence are: Norfolk & Suffolk, Cornwall and the South West? See Fig 1B below, prevalence by ICB (integrated care board - which doesn't align that well with NHS trusts), sex and white/other-than-white Cornwall had Anthony Pinching, consultant...

This paper hasn't been peer-reviewed yet, but I'd like to make a few comments. I think this is the largest ME dataset in the world, with 100,000 people given a diagnostic code of G 93.3 (postal fatigue syndrome, the ICD code that most closely resembles ME, CFS). The F:M ratio of 3.9 isn't too...

Some notes on Jiandi Wan's very interesting presentation Great to have an existing expert in a technical field start working on MEcfs. I think we need much more of this. It makes sense that RBCs are sensitive to local oxygen concentration becoming more flexible and so moving faster through...

#MEA choosing to rely on the CDC study because it is the 'latest data' doesn't sound like the right call to me: we need credible estimates, and at 1.3% this is not: I think we would notice if 1 in 76 people had MEcfs. The CDC data is suspect: 1. It asked people if a medic had told them they had...

Got it now, thanks.

I'm confused. I thought that postural hypotension and POTS could be objectively measured e.g. by the NASA lean test.

These questionnaires are usually used to support Conclusions that patients (including individuals) have objective, physiological, autonomic problems. And I don’t think it’s now safe to draw such conclusions. TBH, I’d always assumed that someone had done this kind of work originally to validate...

Thanks. I struggle to see in such a small study how these findings undermines the idea of a distinction between peripheral and central fatigue.

This is a great topic (I haven't read any of the papers yet). The physiology of pathological fatigue in general isn't well understood (it's not sorted for healthy fatigue either). Presumably, progress in these areas would help the understanding of MEcfs. 1.8. In skeletal muscle physiology...