Search results

I’ve just completed the shorter form for people who may be interested in providing feedback via focus groups or forums and that has an edit your responses button at the end so it looks like you can? It looks like the URLs to edit are unique and include the token to access your data, so...

Many thanks to all involved. Especially Trish. It all feels very positive.

The point @Hoopoe makes is really important. People that get ME are rare, so if not this then those running the projects need to be those open enough to really listen. Worst is probably people who think they understand but don’t or are unwilling to listen or see/do things differently. I saw...

Some thoughts which echo what some others have said. I can’t attend meetings. In person is a complete impossibility. And the often offered ‘easy option’ of phone or video calls still completely rules me out. I can sometimes listen to a call for 10-15 mins but anything interactive is much less...

I have no idea I’m afraid other than to say ‘me too’. Not as bad as you’ve had it but my voice often goes quiet or hoarse/raspy as you describe when I am bad. And returns to ‘normal’ when I’m less bad. As with many symptoms I just put it in the large box of ‘one of those things’. I’d be...

I’ve processed the text of the paper to remove figures, references, URLs and formatting to make it better for text to speech engines and attached it to his post. I’ve also uploaded the audio to soundcloud. It’s not great quality but is hopefully easier than reading for some.

from the paper Another thought/question I have is how much these fundings correlate with results from the Raman spectroscopy study from a while back (https://onlinelibrary.wiley.com/doi/10.1002/advs.202302146) which I seem to remember showed changes around lipid metabolism as well as other...

There looks to be more detailed info in the paper although I’ve only had a quick look.

I may be wrong and the naming gets confusing but this looks like the larger UK Biobank rather than the smaller ME focussed UK ME CFS Biobank.

Another question I have…How feasible or indeed useful would it be to reproduce this with UK ME CFS Biobank samples? Or other international biobanks?

When I was first ill and suffering my GP suspected meningitis so sent me to hospital. Which resulted in me being told there was nothing wrong with me, maybe I had a migraine, and obviously the whole experience made things worse for a long time. The point about a a generation with social media...

That’s a really interesting analogy. My knowledge of biology is poor but I used to deal with problems in large complex software systems, so that’s often one way I look at things. And often there a problem we’d see would take ages to track down because of a complex interaction of different bits...

The correlation between severity of symptoms being unique to the ME group is interesting. I wonder what’s going on there. Really good to see the underlying grip strength results reproduced. Having my HGS measured and seeing my results and wider context of the 2018 paper was a clarifying moment...

Looks interesting. Pleased to see Caroline Kingdon involved as she’s great. And involvement from a teaching hospital/medical school near me. Is there any more info about these workshops or how they came about anywhere?

Thanks, that’s the sort of thing I was thinking. My biology knowledge is poor and chemistry/physics better but rusty. But if there’s changes to how things cross the cell membrane one can imagine how various systems would get upset and behave in odd ways. As others say, interesting paper, lots...

I’ve had periods where the peeing a lot is an early phase stage, then my body suddenly decides it needs to catch up and rehydrate and after that other PEM stuff. And periods where I’ve been stuck in that state for a prolonged time, generally when very bad.

If plasma osmolality changes wouldn’t this potentially have all sorts of effects on other chemical processes throughout the body?