As we approach World ME Day on May 12th, the World ME Alliance is excited to announce the launch of six new graphics that explore different aspects of post-exertional malaise (PEM). These graphics are available for download and use by anyone, with the aim of raising awareness about the impact of ME on those living with the disease.
Post-exertional malaise is the hallmark symptom of ME, and is experienced by roughly half of those with long COVID, but what is it?
The disease where pushing harder can make you sicker.
PEM 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. 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.
Our first graphic focuses on the term exertion, highlighting that this can mean many things, and not just exercise. In the image a women is standing up, giving a speech, in a room full of people. For someone with ME this means being cognitively active, physically active, emotionally active and managing significant sensory input – all of which can lead to post-exertional malaise.
Our second graphics deepens the understanding of sensory overload – be it light, sound, smell, touch or taste. It can come from everything everywhere all at once.
We also chose to focus on pacing in our third and fourth graphics, as this is the key technique people with ME can use to manage post-exertional malaise and avoid getting sicker from pushing harder.
It is deeply important to our Alliance that we highlight the 25% of people with ME who are housebound or bedbound. For these individuals post-exertional malaise is even more extreme, potentially rendering them unable to eat or drink for periods of time and unable to speak. Some live in darkened rooms 24 hours a day, because of the impact of sensory overload.
Finally, we chose to emphasise that different symptoms can get worse for different people. There is no one-size-fits-all when it comes to ME, and while one person may suffer extreme brain fog and pain during post-exertional malaise, another may get new or worsening gastrointestinal symptoms.
All of these graphics are available for free download on the worldmeday.org website. By using these graphics on social media, websites, or other platforms, you can help raise awareness of PEM and its impact on those with ME. Together, we can work towards a better understanding of this debilitating illness.
We look forward to sharing more resources with you in the coming weeks. We will be creating opportunities for you to learn more about PEM, or share your lived experience of this hallmark aspect of ME.