Search results

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...

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...