Harmful graded exercise therapy for people with ME has been dropped in a new draft ME/CFS guideline from the National Institute for Health and Care Excellence (NICE).
#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.
You can steer #MEAction UK’s response to the draft ME/CFS guideline consultation. Join a community call, respond to our social media polls, volunteer to read the evidence reviews and more!
At age 16 I got a virus. Back then I did the right thing: Stop. Rest. Pace. I recovered. At age 19 I got a virus. My GP told me not to stop. Not to rest. Not to pace. 8 years on I have not recovered.
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 UK will continue to collaborate where we can be more effective together. We believe that each ME charity and patient organisation in the UK plays a vital role in working towards common goals.
