Letter from parents of children with ME to paediatricians in the UK

I had some very positive feedback from healthies who'd viewed it on my FB page. The choice of images and quotes was described as 'so very powerful' more than once.

The parent of a son who 'recovered' from ME with the 'help' of Lightning Therapy 15+ years ago was very moved by the song, she appears to questioning her belief that ME is driven by depression and anxiety. That's a big win in my book.
Awareness month and the conversations it enabled was really positive, Blowin' in the Wind definitely added to that.

Going blue and telling people why helped (I wore blue every day btw! So sick of blue by black dress day). My choir event helped because people who'd been too polite to ask me why I'm in a w/chair realised I was really happy to talk about it. And other spoonies began to openly talk about their invisible illnesses (we're working on a secret handshake so we can identify each other).

I was able to tell healthies about Bob, about how there are twice the amount of us PwME as there are pwMS, how doctors think we recover but we just give up asking for help, and how desperately ill and vulnerable people are frightened to ask for the care and services they're entitled to and really need.
All the advocacy elements around ME Awareness Month really came together and definitely helped me to talk to people including teachers, nurses and pharmacists about our illness and the lack of understanding and funding it has.

So I agree with you very much about different approaches working symbiotically Robert. There's a place for everyone in ME advocacy. Advocacy efforts don't have to be dramatic or grand or clever or elitist, because, like voices in a choir, it's the combined voices that give the impact.

One point I've made before on another thread (way back somewhere in the mists of time), is that we are our own best ambassadors for ME. When we get to go out we shouldn't be embarrassed by our condition, we should be open and honest. The way to overcome prejudices and misconceptions is to educate and demonstrate who we are.

(I also think we should adopt the song 'This is ME' from The World's Greatest Showman' as an ME anthem, but this post is already a waaay too long!)