This just seems to be an exercise in frustration for us, frankly. We aren’t kept in touch with what’s happening, there’s no transparency about who...
How completely, predictably, and despairingly unsurprising….
One of the weird things I noticed right from the start when I got ill was that I could no longer sing along to music as I couldn’t hold my breath...
Me too.
Great letter, thanks to everyone for their hard work on this.
Schrödinger’s ME patient - simultaneously to be believed and not believed….
When I had my hip arthritis finally diagnosed about 4 years post ME diagnosis, my GP told me that swimming would be a good idea to help keep my...
There’s an interesting quote which caught my eye in the York report, which makes it very much more explicit that GET is considered an essential...
Split from NICE ME/CFS guideline - draft published for consultation - 10th November 2020 MEpedia states this on the page about the York Centre...
And also, be aware that paper-based applications are taking weeks longer than normal at the moment. If you can renew it online using an existing...
It’ll be because it’s for income-only based benefits, and neither New Style ESA or PIP are based on income. The first is on your NI contributions...
Bless you, Barry, thank you. She’s had a rough few years what with one thing and another, and she has some potentially serious health issues to...
I used to get terrible sensory overload when I was first ill but these days (12 years on) it’s not so bad. It had been helped immeasurably by the...
I know I’m in for a bad day when I wake up with really gluey, thick saliva that no amount of fluid seems to deal with, though I don’t get the...
If you can stand it, you can read that entire article of Wessely’s by registering for free on the journal website....
Merged thread Guardian article -“‘I felt betrayed’: how Covid research could help patients living with chronic fatigue syndrome” Pretty decent...
And he’s back in the Guardian…. https://www.theguardian.com/commentisfree/2021/jun/10/long-covid-hope-recovery-symptoms?CMP=Share_iOSApp_Other
Interesting topic and fascinating reading everyone’s experiences. I have severe ME and was moderate for the first four years of my illness. I’ve...
Some more info on the delays to publication, nice bit of detective work here through a FOI request.... I saw it via @dave30th on Facebook, but I...
Exactly, @lunarainbows. There is just no way to know what’s going to make people worse as we don’t know what causes our illness(es) in the first...
Separate names with a comma.
