For ME Awareness Day, Laura’s Pen has compiled her relevant articles on ME/CFS…
I normally go mad for ME Awareness Day. I have some grand idea, put it into action and make myself ill.
This year I’ve had to be sensible because I’ve had an operation this week (I wrote this blog in advance). But, rather than miss out on ME Awareness Day completely, I thought I’d compile all the things I’ve already done that people can use to spread some knowledge about ME/CFS, and some links you can use to help the fight for Awareness and funding.
I’ve also written this piece for the Mighty: “Why my ME/CFS diagnosis meant devastation, not answers”, which is about the limbo ME patients are left in because there are no effective treatments.
Here are some quick links so you can skip to the things you’re most interested in:
The ME Adventures Comic
“What if?” A poem in response to people who say it must be nice sitting at home all day
What would you do if you were cured tomorrow? Wordcloud
A Day in the life of ME video Diary
A Day in the life… (of various illnesses) live tweet
How to help raise ME Awareness/ME sufferers
Articles I found useful from elsewhere on the internet
This was my favourite ME Awareness piece, but it also really did me in. It’s a comic about two girls “Maddie”, who has ME and “Nancy” who is healthy.
The comic is all about how energy and exertion differ between the two women, and how their experience of meeting up for a coffee has a dramatic effect on Maddie and none on Nancy.
It also shows the effects of Post-Exertional Malaise, which is a worsening of symptoms 24-48 hours after exertion.
You can see the ME adventures comic here.
There is also a printable version if you would like to print it to use at Awareness events etc.
This is a poem that isn’t specifically about ME but is about the reality of being housebound by an illness.
It starts with a comment from an other “It must be nice sitting at home all day,” and then goes on to reply with a series of “What if?” questions that help to explain why it’s not.
It’s a video performance but you can also read it if you prefer on my post about it.
It’s also on Facebook if you want to share it.
The results would not be surprising to patients but perhaps would be to some in the medical community.
I made this a few years ago so I cringe to watch it now. A lot has changed since then and I’ve picked up three extra diagnosises since.
I’ve also learned to pace myself a lot better, so now I order shopping to my door rather than going in person and spending three days recovering.
I also pushed myself too hard that day I think because you start to become aware of how little you do when you record it! So keep that in mind too.
But while I may cringe, hopefully it’s still a good demonstration of what ME means to me and some others out there. View the blog about it now.
This was a recent update on my video diary. I tweeted throughout the day to show what I do and how I feel throughout the day.
Although, as it turns out, live tweeting takes a lot more energy than I’d wagered and I had to slow down by lunchtime and stop completely by dinner.
There are various things you can do. Sign petitions, donate Money or help the movement to demand more funding and awareness.
A good place to start would be MEAction.net. These guys organise protests, start petitions, send information to politicians and more.
In fact, there are protests taking place today throughout the world, you can find out where on the dedicated Millions Missing website. Follow the hashtag #millionsmissing on social media to see what’s going on.
Charities to Donate to to directly help fund research:
Invest in ME (UK based, run entirely by volunteers)
The Open Medicine Foundation (US based, funds research by world-renowned geneticist Dr Ron Davis and his team who have been making breakthroughs recently)
A fantastic TED talk on ME by Jen Brea in which she talks about the obstacles patients face in being diagnosed and treated.
This is a great article from Superpooped blog about the relentlessness of fatigue in ME/CFS.
And this article about “payback” on The Mighty describes how everything you do today takes from what you can do tomorrow (with interest).
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