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I’ve only had the energy to skim the thread and the paper, so this might be a little off track, or repeating what’s already been said. But I think this study is a step forward, for a couple of reasons: – it uses several sensible objective physical measures Which we’ve been calling for for such...

I’m not quite sure what you want with your prevalence citation, but this Louis Nacul in study is interesting based on the British Columbia population survey. 1.1% people self reported CFS, but only a third of these of these met questionnaire-assessed criteria. > The population prevalence rates...

Good grief: clear reporting of a negative result, including that it contradicts earlier positive findings. That might seem like a backward step, but I think it’s huge progress, not least because Arnaud Germain is an impressive researcher from a big group (Maureen Hanson’s)

Thanks. If my maths is right, 20% said they improved with CBT and physical function. So overall, it’s modestly unhelpful, compared with a GET, which is very unhelpful/harmful. and that’s consistent with other surveys – at least according to my rather unreliable memory.

That’s interesting, but inevitably biased since people who did well on it are far less likely to find the survey. What were the comparison figures for CBT/other stuff? A comparison with other treatments is probably more useful.

Looks like they do have some interesting data for Persistent Lyme disease, but the samples are too small annd the ME cases are meaningless given those selection codes. Also, it is super easy to get false positives (or very low P values near significance) due to artefacts in the Data and even...

This isn't the main finding, but this MRI on a subset of effort preference participants while doing handgrip (I think) is very interesting and received v little attention. Though based on only 8 peeps, IIRC, so not much to hang our hat on.

Bear in mind that an AUC = 0.5 is what you get from a coin toss.

It would be interesting to know what impact the menstrual cycle has on symptoms in other illnesses.

I fully agree with that, largely because of the excellent analysis you’ve done show that other medical charities fund a big proportion of the research that happens, and I believe that helps open the coffers of the funding organisations. The gift aid (charities reclaiming tax already paid on...

and this puts an enormous question mark over the study. The highest credible prevalence rates we have for ME/CFS, from the recent Samms/Ponting study, is 0.6%. Seems hard to believe they found the same rate of NEW cases a year in the non-Covid control group Something doesn’t add up. You would...

A single cell RNA study from Andrew Grimson, Germain? (Maureen Hansen group) highlighted monocytes as one of the cell types difference between people with me and healthy controls. I’m not sure if monocyte differences were baseline or pre-/post Max exercise. Sorry, I’m in no state to find links...

Seriously impressive digging again on here. I’m afraid I can’t help, to pass on a couple of things Chris has mentioned to me in general. First, because UK buying bank data is so accessible, it’s used in a lot of GWAS Studies, and some of these are of questionable quality. Second, Mendelian...

personally, I think a charity the size of the ME Association should be working through its staff primarily, with trustees providing oversight. At the moment, the trustees appear to be micromanaging the charity and making all significant decisions. I’m sure that was necessary when the...

I agree with what @Trish said about transparency, and I think we should wait to hear what they have achieved before passing judgement. I live in Wales where there is next to nothing in the way of services. ADDED that might Make things a lot easier for getting something appropriate set. From...

This is huge, though not anything we can expect to change in the short term given prevailing medical attitudes., likewise GP surgeries (unless there is a research breakthrough). My Dad had Parkinson's, and I think I was pointed towards Parkinson's UK multiple times by different parts of the NHS...

I'm not sure. How many people in the UK have been given a diagnosis? (150k?) The Samms/Ponting study last year using NHS hospital episode statistics for England stats found 100k PVFS cases. PVFS is the NHS diagnostic code most closely matching ME (there is another one for Long Covid). This...

I’d forgotten all about that, and I am proved useful. I’ve tried another number of devices and methods, and even the very expensive WHOOP device (which I had on a free trial) wasn’t very accurate on sleep stages. Certainly, it would sometimes tell me I was sound asleep when I was simply lying...

Insights is an excellent word to have in the title. And implies something interesting, and distinct, in the way that simply “science“ does not. On reflection, giving that your blog will usually be promoted alongside a specific blog title, and you also have the strap line, you probably could...

Yes! Or ME/CFS Science Searchlight I kept coming up with Spotlight yesterday. Which can mean scrutiny, but it can also mean limelight, which does not work.