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Looking at Prusty's talk I think he is doing sensible experiments. The biggest problem is that his sample sizes are way too low which makes a lot of it hard to believe in my opinion. It's cool I think to look at an antigen array and it is a good follow up to the 'factor in the blood' to isolate...

Afaik our understanding of the fatigue in ME is that it is extreme and exertion makes it worse. This ought to be enough for a doctor to take it seriously but it isn't a sufficient understanding of how the symptoms change over time. Symptoms in many people fluctuate wildly over time but we have...

@Andy or whoever might know. Is there any particular reason why 20,000-25,000 people was chosen as a target? Is there a power calculation anywhere? Might 9000 people be sufficient to detect some important signals?

Also I asked it for a paper that showed what it was saying, and it gave me a paper which doesn't exist! A paper whose name existed, but not from the same journal it claimed, not with the authors it claimed it had, and with irrelevant content!

I love the idea of this for asking pointed academic questions but unfortunately a lot of the time it seems to be answering with complete fabrications. For example I asked it about MAIT cells (mucosal associated invariant T cells) and it confidently told me that their T cell receptors bind to a...

@Andy Perhaps you've already thought of this: An idea to recruit more patients that aren't already in ME networks could be to encourage participants to ask their GPs if they'd be willing to hang up Decode ME posters in their waiting rooms. Posted off my spit kit yesterday, i'm so glad to see...

Is it possible to get biopsies from lymph nodes? Or is this too invasive and dangerous to do? Do you think there would be much to be gained from histology, flow cytometry or comparative omics of these tissues, or would it just confirm that yes there are tons of b cells in there without providing...

@Trish @Keela Too These are understandable positions. The way this disease fluctuates makes it almost impossible to attribute cause and effect a lot of the time, in my case at least. A lot of the way the disease progresses appears to be random noise, but I can still feel my mind desperately try...

@Keela Too Thankyou I really appreciate your comprehensive reply, there's lots to think about. I'm in a way surprised about the nastiness of the side effects you experienced and mentioned others had. As I understand it PrEP is taken long term by many people and most of them don't have side...

A question in light of my other post about trying tenofovir. Clinicians must follow the Hippocratic oath 'at first, do no harm' , but what's your opinion as an individual trying something out on yourself?

TLDR: considering taking an antiviral taken routinely as PrEP, what do you think about tenofovir for ME, particularly its safety profile? I am considering trying the antiretroviral drug Tenofovir. In the UK they would never prescribe this for ME of course, but you can also get the drug without...

You can certainly detect significant quantitative differences in expression with this number of samples - it's not like a GWAS as you say. There will still be problems with multiple testing though - they have hopefully corrected for the number of different genes they have looked at, but the NIH...

WAVE3 aka WASF3 appears to be predominantly a central nervous system gene. It's expression is mainly found in those tissues according to RNA expression data and protein expression data. ( from https://www.proteinatlas.org/ENSG00000132970-WASF3/tissue)

Do you think the female to male sex bias seen in both ME and the majority of autoimmune diseases is suggestive of autoimmune involvement in ME? As for PEM I'd love to hear if there have been any studies looking at how it manifests in different people. As it stands I don't feel satisfied there...

This is great - exactly what i was thinking about. It's quite damning

Thanks, I was trying to find an audiobook version of this yesterday in fact but with no luck. I'll take a look at the text copy instead

I was looking yesterday at a meta review of meta reviews for CBT efficacy in all sorts of conditions, and it found positive evidence of CBT efficacy in just about everything they looked at: "substance use disorder, schizophrenia and other psychotic disorders, depression and dysthymia, bipolar...

Merged thread - article discussed first Abstract here Came across this article in the telegraph reporting CBT and exercise improves fatigue in RA: https://www.telegraph.co.uk/news/2022/06/28/arthritis-getting-positive-thinking-could-ease-symptoms/ It seems to be in connection to this paper...

Thank you for the explanations! Do you (Simon, Chris or anyone) know if they reported on rs7337312 ( SLC25A15 ) which looked somewhat promising from a previous UK biobank analysis? I couldn't see anything from a cursory look at their supplementary data

from the body of the paper: "ICP8 was detected in the biopsies of 83.3% (25/30) of Group 1 patients, 73.3% (11/15) of Group 2 patients, and 6.7% (1/15) of control patients" odds group 1 = 25/5 = 5 odds control = 1/14 = 0.07 OR = odds group 1 / odds control = (25/5) / (1/14) = 70