World ME Day raises awareness of devastating symptom impacting millions post-COVID
Wales joins organisations around the world to promote awareness of ME - the disease where pushing harder can make you sicker.
In honour of World ME Day on May 12, 2023 WAMES and the World ME Alliance are proud to announce the launch of a global awareness campaign addressing the hallmark symptom of ME: post-exertional malaise (PEM) and using the tagline “ME: the disease where pushing harder can make you sicker.”
In Wales WAMES chair Jan Russell says: “We are pleased that the Health Minister has acknowledged the need to improve care for people with ME by allocating money to Health Boards to expand Adferiad Long COVID services to include people with ME. WAMES has begun sharing information with interested Health Boards to ensure that an understanding of PEM and the dangers of encouraging people with PEM to ‘exercise yourself better’ underlies all service development.
People with ME have been misunderstood, ignored and mistreated for too long in Wales. And now many people with long COVID also develop ME and experience PEM. The publication of clear guidelines from the UK’s healthcare advisory body, NICE, in Oct 2021, should help to illuminate the way forward, so we are calling on health professionals to #ImplementNICEmecfs to ensure service are safe for people with PEM.”
The hallmark symptom of ME is post-exertional malaise (PEM) – a worsening of symptoms after physical, mental, or emotional exertion that would not have caused a problem before the illness. For some patients, sensory overload (light and sound) can induce PEM. These episodes are sometimes referred to as “crashes," and may last days, weeks, or permanently.
Mair explains “My whole body just feels like its slowing down, like it’s running out of battery and the more I try to push against that, the worse my symptoms become. The only thing I can do is to stop… my body isn’t working, my brain isn’t working…I try to resist going to bed because I want to do stuff, but I just have to stop and rest.
For most people ‘resting’ could mean sitting down and watching telly, or reading a book, but that’s ‘activity’ for me and would make things worse when I’m getting PEM… I have to stop completely and lie in the dark.”
World ME Alliance co-chair and Solve M. CEO, Oved Amitay notes, “It is vital for health care professionals to identify PEM, as its presence changes the management advice a patient should be given and indicates that a diagnosis of ME should be considered. To avoid prolonging and intensifying the suffering of millions, providers must listen to and believe those who experience PEM.”
“Patients from around the world are encouraged to share their PEM stories on social media and with local press, and to get involved with their national ME organizations. “If we listen to the lived experience of those with PEM, we can #LearnFromME,” says Amitay.
About WAMES
WAMES was set up by local support groups following devolution to be a voice for people affected by ME in Wales. To learn more visit http://wames.org.uk. Contact WAMES via helpline@wames.org.uk and follow us on Facebook or Twitter
About the World ME Alliance:
The World ME Alliance is composed of ME organisations from around the world. Its membership is made up of senior leads/representatives from national ME organisations, working together to achieve change for people with ME at a national and international level.
To learn more about the World ME Alliance, visit http://worldmealliance.org. Contact the World ME Alliance via info@worldmealliance.org and follow the Alliance on Facebook or Twitter.
About ME (also known as ME/CFS):
Myalgic encephalomyelitis (ME) is a disabling, chronic and complex disease diagnosed by the presence of 4 key symptoms (PEM, chronic fatigue+, sleep disturbance and cognitive problems) but with many more often experienced. There is no diagnostic test, cure, nor universally effective treatments for ME, and patients often suffer for life.
It is estimated that between 17-30 million people live with ME worldwide, 13,000 in Wales. However, since the COVID-19 pandemic hit, this figure is thought to have doubled. There are now 65 million people living with long COVID worldwide, and half of those meet the criteria for an ME diagnosis.