Search results

Setup a scientific panel of people like Jonathan and Chris and have patients chosen from this forum by vote as patient representatives. Get Sonya from AfME to help organise and chair the group. Let anyone pitch and all pitches would be openly discussed here, but that panel and patient group...

Given the link on their website (on an older article from 2023) to book a test, which seems linked to a US firm which runs private medical centres in the UK, I’d agree. https://recognitionhealth.com/ But it does seem interesting they’ve popped up after a couple of years of quiet. Has something...

Someone from a private company selling a test which it wants to market and then talking about treating them, when we have no idea about treatment… hmmm. I understand the hope especially from the patients involved, but even they seem to admit they’re not cured after being treated. David Strain...

So now we’re moving beyond types of virus to variants within a virus! Makes you think though, if (still a big if) ME/CFS is virally triggered is there some bit of DNA or RNA shared amongst those which trigger?

I find this interesting going back to my experience of vaccines, no problem with the flu one but significant issues with mRNA and viral vector covid-19 ones. So my body is, for some reason, reacting very differently to I guess the spike proteins? So within the wider population why not...

Could it just be the effect of age here or did they account for that? Presumably those who were pregnant were younger and the difference looks similar to the age ratios?

And a write up on Arstechnica https://arstechnica.com/science/2025/01/how-sleeping-pills-interfere-with-the-brains-internal-cleaning-mechanism/ I was also pondering potential ME/CFS relationships too. Either something disrupting norepinephrine and this process which triggers some symptoms or...

Having read the rest of the thread I think the answer to my question is somewhere between ‘yes’ ‘lots of potential reasons’ and ‘it’s complicated’…

Sorry if I’ve missed this, still getting my head around the thread, but why would the ratios of these be different? One type being overproduced or the others underproduced? Or over or under-consumed?

I understand the reasons for means-testing, but the way so many systems are set up drives people into poverty before they can get help and then keeps them there. A Social Care is another big problem in the UK. For something which is supposed to help provide security, for it to effectively remove...

Yeah, it’s the difference between research and treatment too I think. Most of us have access to and interactions with health services, which are really treatment services. Investigations performed are just to find which predefined path we are put on, not to understand something. If there isn’t a...

I have zero information on this but I would be 99% sure it’s government/institutional. Most UK research linked to universities is I think government, national academies/institutes, european commission, etc. There’s sometimes charities involved too but individual donations seems much more a US...

I found this an interesting article from a science writer for Our World in Data. Rather than the usual hype it focuses on five treatments which showed high degrees of efficacy in phase 3 trials published in 2024, so are being or close to being used and having a real impact. There’s also audio...

I’m only recently teaching myself this stuff, biology also wasn’t my thing educationally so I may not be right but… This paper is I think more looking at two different analysis techniques (GWAS and rare variant/loss of function burden tests) than partial or full genome sequencing. You can do...

This isn’t something I’m an expert on, but with a £7 million cost I expect the target will be institutional/government funding. And while there may be a mix of funding sources, anything attempting to combine those with commercial services would I agree get very difficult in terms of ethical and...

This looks really interesting. So good to see Chris, Sonya and others working together on the next steps after DecodeME. I’m sure the trials and application processes have taken a lot of time and effort. And thanks to @Chris Ponting for the links to the paper and info on other uses of the...

Read this email earlier, all really good stuff to hear. The numbers involved, the DNA data having been processed, extra questionnaires. The work involved must have been massive. Thanks to all involved. Now the hopefully fun bit for the science team!

I can get a delayed PEM response from sitting at a sink and washing my face. Or raising my hands and using clippers to cut my hair (even if lying down). Or having a conversation. Or… you get the idea. Sometimes there’s immediate effects too. Sometimes not. But none of these are ‘exercise’ and...

Absolutely agree @Kitty I’ve been reading (listening to) the paper some more and made some notes… On the one hand I’m not sure this can be related to PEM because of their definition of exercise and exerkines. I can get PEM from minimal activity which certainly does not meet their definition...

I suppose you could say it’s caused by exertion more than exercise? But even that isn’t telling the whole story and it’s certainly not a 1-1 relationship. But there could be something whereby some of the things produced by activity are sometimes involved in something going awry. From the...