We’re joining our peer organizations at the World ME Alliance again for World ME Day 2023. This year’s theme focuses on the hallmark symptom of ME/CFS: post-exertional malaise. The goal of the campaign is changing the narrative and creating a more accurate and universal understanding of this disease. That’s why our tagline this year is “ME: the disease where pushing harder can make you sicker”.
The Alliance’s 21 member organizations and countless individuals will be collaborating across the globe to get this message out for May 12th.
We’re going to continue using the hashtag #LearnFromME, because we know the ME/CFS community has incredible knowledge and expertise to share, and everyone can #LearnFromME. Whether you are a health professional, a friend, a family member, a politician, a healthcare commissioner, or a member of the public: ME/CFS is a disease that we can and should learn from.
So what is post-exertional malaise, and why are we focusing on it?
Post-exertional malaise (PEM) is something that everyone with ME/CFS experiences.
It is a worsening of symptoms after physical, mental, or emotional exertion that would not have caused a problem before the illness and is the hallmark symptom of ME/CFS. For some patients, sensory overload (light and sound) can induce PEM. PEM intensifies the severity of symptoms and may last days, weeks, or permanently. The symptoms typically begin to worsen 12 to 48 hours after the activity or exposure.
When someone hears about ME/CFS, we want this key aspect of the disease to be the first thing that comes to mind.
This is the story of ME/CFS that needs to be known, and learnt from.
Long Covid means millions more are experiencing post-exertional malaise
Before the COVID-19 pandemic hit, there were between 17 and 30 million people living with ME/CFS worldwide. But now there are 65 million people living with Long Covid, and half of those individuals are experiencing post-exertional malaise.
This means the number of people living with ME/CFS has likely doubled over the past 3 years.
ME: the disease where pushing harder can make you sicker
The World ME Alliance’s 21 member organizations spanning 14 countries are all getting behind World ME Day and the focus on post-exertional malaise for 2023.
We plan to:
- Define the story of ME/CFS around this core worsening of symptoms
- Connect and build alongside those with Long Covid
- Create resources to help everyone #LearnFromME and post-exertional malaise
- Lobby decision-makers globally for more research and better education around post-exertional malaise
In the run up to May 12th we’ll be creating ways for you to share your story of post-exertional malaise, or learn about this core aspect of ME/CFS and the impact it has.