There are some brilliant descriptions of what it feel like before and after exertion! To add my own experience to what’s already been said, I’ve...
Wow I’ve never thought of it like this, such a good point! One thing I notice is that if I’ve crashed or over-exerted too much then I will...
Just wanted to throw in that for me excessive cognitive or emotional exertion can mean that I’m generally less able in my whole body, so it...
Thank you for doing this!! Excited to read it when it’s out.
Thanks @Utsikt I agree, it doesn’t sound like it from that, but I wonder if it’s possible ME could be an as-yet unidentified form of lysosomal...
Thanks for posting! A paper here about sphingolipid metabolism disorders is a bit beyond my understanding but I think may be relevant here. Does...
It’s so harrowing to see these. I really hope the ME community can rally and get help to them. I’m not on Twitter or LinkedIn but I’ve tried to...
I think it’s a good idea to highlight the crisis of treating people on corridors etc, but you’re never going to get a true picture when staff are...
Merged thread BBC reporting live from Royal Free Hospital, London. Asking for patient experiences Today in the news: “The BBC is spending a day...
I don’t use it anymore as I can’t work but my partner does and will sometime share articles to try and increase general awareness. So it could be...
@MrMagoo thank you so much that’s really kind of you. I guess one good thing to come from this illness is that the injustices force you to be...
@Lou B Lou I fully understand why you brought up the Sussex and Kent ME/CFS Society as I had an unpleasant experience with them around 4 years...
Thanks so much for doing this and for throwing the question out to everyone (which no doubt increases your workload)! Something that seems like...
I’d like to vote but I don’t know what caused mine, however I had a nasty flu-like illness and for the next three years until the onset of my ME...
I wanted to comment on the stat that we’ve heard in the inquest about the hospital seeing around 5 very severe ME cases per year. I’m sure that’s...
Thank you for doing this – and much more such as your Qeios piece – your dedicated advocacy gives me hope!
Thanks @bobbler – I’ve been meaning to say that for an age but went down for a bit and only resurfacing now! :-)
Thank you so much @Nightsong that’s really helpful! I think because of the acronym the two have merged in my mind and I mistakenly thought the...
Hi everyone! I’m wondering if anyone can help me please?! I know an ok amount about the BPS issues and their history with ME but I don’t know...
Thank you very much to you and your team @Chris Ponting it means a lot to know people are working so hard and passionately on our behalf!
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