World ME Day raises awareness of devastating symptom impacting millions post-COVID

To mark World ME Day on May 12, 2023, the World ME Alliance and its 22 member organizations 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.” Solve M.E. is a proud founding member of the Alliance.

It is estimated that between 17-30 million people live with ME/CFS worldwide. 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/CFS diagnosis. 

Myalgic encephalomyelitis (ME/CFS) is a disabling, chronic, and complex disease. There is no diagnostic test, cure, nor universally effective treatments for ME, and patients often suffer for life.

The hallmark symptom of ME/CFS 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. 

For World ME Day this year, the World ME Alliance campaign aims to ensure the harmful effect of pushing harder is the first thing that comes to mind when someone hears about ME/CFS.

World ME Alliance co-chair and Solve M.E. CEO Oved Amitay notes, “Post-exertional malaise is a devastating symptom of both ME/CFS and Long Covid that is far too often disregarded or incorrectly managed by health care providers. PEM is a varying symptom that is challenging to recognize, and doing so requires intense listening to the person experiencing it. 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/CFS 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/CFS organizations. “If we listen to the lived experience of those with PEM, we can #LearnFromME,” says Amitay. 

 

Our most recent EmPOWER ME event “Navigating the World with Energy-Limiting Disabilities,” includes tips from ME/CFS and Long Covid advocates for overcoming personal, professional, and medical challenges, particularly as they relate to PEM. Watch a recording of the event here.

 To find out more about ME or take a #LearnFromME action to support the cause, visit www.worldmeday.org

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