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Time for some more wild conjecture from someone with no medical training and little understanding… Maybe all people with a susceptibility to ME/CFS have the imbalance (maybe not the right word) seen in mild/moderate and something about severe causes things to become balanced again? Could there...

I’ll try and do the more formal structure as this looks useful, but it came to me that PEM for me is perhaps described best more poetically… please feel free to move if better elsewhere I know the journey But I don’t know how long it will take Or exactly what I’ll see along the way

Having it public would be a really useful resource

Agree, those with the biggest financial incentives to do the right thing and follow the science and get people vaccinated (amongst loads of other preventive healthcare measures) are health insurers and drug companies. So they will.

It would be good to get the thoughts of someone a bit more familiar with this sort of study. The numbers look quite low for getting much useful from GWAS from what I’ve read around DecodeME. But they’ve used CDC diagnostic codes for diseases, and MyCode looks like a proper healthcare system...

Maybe for mild/moderate people the compensatory mechanism for whatever is going on elsewhere is working while in severe it’s not or has stopped or paused for some reason. Or it may not even be a distinction as clear as severity but just for different people with ME/CFS at different times or in...

I’d hoped any drug trials we saw in the UK would have been done by people who cared about or at least understood ME/CFS. This all looks very generic and boilerplate.

Dr Jacqueline Cliff Has been doing the HHV-6 reactivation study which is ongoing https://www.brunel.ac.uk/research/projects/reactivation-of-herpesviruses-in-chronic-fatigue-syndrome

Yes, limited space but recording available after. This from an email I received

To me uncertainty and partial information and things we as patients need to find ways to be comfortable with. If there’s anything we know about ME/CFS it is that it isn’t simple. I’m hugely hopeful about upcoming science, but expect that in even the most enlightening studies we’ll only uncover...

Presumably makes them feel a bit woolly?

Absolutely. The more I learn about biology the more you can see it using fundamental chemistry and physics, not just the ‘simple’ stuff but including crazy quantum and probabilistic stuff. Amazing stuff. So much more for us to learn and (try to) understand.

The way I suppose I would probably think about it is a complex circuit with lots of different electrical pathways/tracks and switches and components. Or maybe even just the electrical system in a house. And depending upon which switches are enabled different lights switch on. And sometimes you...

Oh that’s interesting @Yann04 the whole MCAS thing is something I’ve been interested in learning more about. Thanks @forestglip that’s really useful to help understand what information you’re trying to get at.

I’d have difficulty answering a ‘first night’ question. I can’t be that fine grained really. I would say that I have a mixture of all of these after exertion, but it varies presumably depending upon many variables which tbh I cannot be sure of: Difficulty getting to sleep Less restful sleep...

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...