The Scottish Sunday Express published a Comment piece by Emma Shorter who shared her experience of getting a virus nine years ago and never recovering – as a warning and wake-up call for the government to adequately address long haulers who are not recovering from Covid-19. Read the article. Emma talks about how the practice
#MEAction UK has just received a momentous email from the National Institute for Health and Care Excellence (NICE), advising us that they have updated the warning on the 2007 CFS/ME guideline, directing health professionals to the new draft recommendations on graded exercise therapy.
There were significant concerns about the recommendation of a physical activity programme in the draft ME/CFS guideline, even with the caveats attached. The recommendation that a physical activity programme should be considered if patients would ‘like’ to start one, was felt to imply that there is a choice or a desire involved, rather than increased physical activity being impossible for many.
At our first community call on the draft ME/CFS guideline from NICE, training in all areas of the guideline was seen as key if it is to have an impact on the health and social care professionals implementing these recommendations.
#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!
