This World ME Day 2023, we are focusing on the hallmark symptom of M.E., post-exertional malaise. The campaign is about changing the narrative so that people begin to understand this disease more accurately. The tagline for this year is "ME: the disease where pushing harder can make you sicker”.
We are asking people with M.E. to share their story so we can put it before professionals, policy-makers and the public, helping them to #LearnFromME this World ME Day.
Sharing your experience of post-exertional malaise highlights just how much of an impact it has – and can help people living with M.E. feel less alone. If you feel willing and able to get involved, please follow this link to our secure Google Form to share your story with us. Thank you.
What is post-exertional malaise?
The symptom post-exertional malaise is something that everyone with M.E. 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 M.E. For some patients, sensory overload (light and sound) can induce post-exertional malaise.
Post-exertional malaise 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.
Long COVID means millions more are experiencing post-exertional malaise. Before the COVID-19 pandemic, there were between 17 and 30 million people living with M.E. 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 M.E. has likely doubled over the past three years.
Action for M.E. and the World ME Alliance plan to:
- define the story of M.E. around the core worsening of symptoms that comes with post-exertional malaise
- 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.
When someone hears about M.E., we want this key aspect of the disease to be the first thing that comes to mind. The campaign will keep last year’s hashtag #LearnFromME, because the M.E. community has incredible knowledge and expertise to share, and everyone can #LearnFromME.