Do you want to win a free copy of Waiting for Superman? We have three copies to give away to people in the UK! To enter, all you have to do is follow #MEAction UK on Instagram, like and comment on this post. The deadline is 9am (GMT) Monday 8th March! Win a copy! Thank
#MEAction UK is highlighting the links between “Long Covid” and ME in the press. In particular, we want people at risk to know about the danger of exercise if they have post-exertional malaise.
We are winning the awareness battle – there is a way to go yet, but society is taking ME more seriously now than even 4 or 5 years ago.
It was brilliant to find people who not only understood life with ME but were fighting to make it better. I soon realised there was a lot of work happening all year round, far beyond #MillionsMissing, and I’ve been helping where I can ever since.
“The Scottish Government has responded to our petition with a range of actions; if these are seen through, I am hopeful of change in Scotland.”
I want to raise awareness and educate as many people as possible. There is a real lack of understanding for ME generally as well as within the medical world.
I look forward to our weekly office hour video call as this can be my only interaction with others outside of my family. It’s also the only meeting I’ve done where it’s still ok if you’re in your bed!
#MEAction’s emphasis on campaigning, and philosophy that the biggest changes would come from forcing institutions with power to listen, resonated with me.
#MEAction UK has sent an open letter to Matt Hancock asking him to recognise the harm caused by graded exercise therapy. We are calling on him to ensure all advice for people with ME, and those at risk of developing ME post-COVID, warns of the harm from graded exercise therapy. Join us by asking your MP to write to Matt Hancock too and telling them about your experience of ME.
Funding for the world’s largest genetic study into myalgic encephalomyelitis (ME), led by a partnership of patients and scientists, has been announced. Thanks to £3.2 million funding, awarded jointly by the Medical Research Council and National Institute for Health Research, work can begin on DecodeME, the ME/CFS DNA study that hopes to reveal the tiny differences in a person’s DNA that may affect their risk of developing ME/CFS, and the underlying causes of the condition.
