Very good, succinct summary.
Lots of people signing up over the last few hours - 600+ now. AGM is Monday afternoon - would be great if we had close to a 1000 by then. #pwME #ME #MEcfs
Currently nearly 300 signatories - my personal belief is that NR has to step down if the MEA want a future representing pwME. I currently have no faith in the org. #myalgicencephalomyelitis
Totally professional and rigorously researched this 27 minute film combines the facts with the relevant film clips to back up the evidence that #ME patients have been disbelieved and mistreated for the last 30 years. This video shows one of the main reasons why this is so.
youtu.be/RiwX9Y0NbiQ?...
It’s an absolutely brilliant summary. A must watch for anyone new to ME.
Feels like a half baked sorry not sorry. Nothing from the charity itself. Just “sorry you felt that way” nonsense.
Feel fully defined by my illness! And that’s ok. It’s full on and impacts everything I do / don’t do.
Hello Rachel - lovely to see another Rachel spelling their name correctly!
This was exactly my experience for the first 5 years of ME. I thought I was recovering between crashes but o wasn’t. I was actually only ever getting back to 80% of the level before. Doesn’t take long for your life to start looking VERY different
Agree. I often get the calculated risks right these days but it’s always something new or unforeseen that breaks me….
Really happy for you Cam. Not quite able to do as much as you but feel lucky / grateful that there’s been some stability lately - felt like I was constantly declining for the first 5 years.
It’s been a great help for me too. Agree that it has its limitations (ie not always applicable to severe ME etc) but it’s helped keep away major baseline deteriorating crashes for me for the last 18 mth. Consequently, I’m now able to do a little bit more than before.
Ok….let’s do this. Still reading over there but would love to find a nice friendly home for chats on TV, books and, most importantly, how to navigate life with #myalgicencephalomyelitis.
