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We are excited to launch an all-new educational feature – Facets of ME! We will be diving into the multiple facets of ME/CFS including symptoms, comorbidities, practical tips, and more. Our goal is to take the first Friday of each month and delve into one particular facet of ME in a way that is easy to understand. It will be shared on our site and through social media. We hope to lead a great community conversation that will help all of those with ME, including those who are new to ME after COVID19, to better understand the condition.
We can share our hard-won knowledge with one another as well as the wider world to help educate about this illness. People with ME (or people who suspect they might have ME), caregivers, allies, healthcare practitioners, fellow spoonies, and the general public are all welcome to join in by responding to posts and sharing across all social media channels!
We have always worked to build resources for people with ME and continually reach out to those new to ME/CFS. That need is growing exponentially due to the pandemic and the millions more that are coming into our community. New projects like #StopRestPace, #12DaysOfPacing, and now #FacetsOfME are one way we hope to help mentor those new to the disease and keep supporting our long-term community members as well.
Our very first #FacetsOfMe will be this Friday – February 4th! We can’t wait to see what knowledge the community has to share with one another! There is a wealth of knowledge from our lived experiences and we know this will be valuable to many!
Facets of me: post-exertional malaise
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It is time for our very first Facets Of ME! When discussing the facets of ME, it seems almost impossible to start with anything other than the cardinal symptom of myalgic encephalomyelitis — post-exertional malaise (PEM). You might also see it called post-exertional symptom exacerbation or post-exertional neuroimmune exhaustion.
Okay, but what is it really? What does it feel like? How do those who experience it describe it?
PEM “refers to a worsening of ME/CFS symptoms after minimal physical or mental exertion, which can be delayed 24-72 hours or more.” – MEpedia
The more severe episodes of PEM are often called a “crash” by people in our community. A crash in myalgic encephalomyelitis/chronic fatigue syndrome is a “temporary period of immobilizing physical and/or cognitive exhaustion” resulting from post-exertional malaise. – MEpedia
It is not the same as being more tired than normal after activity. It is not the achiness you can get when you are building up muscles and increasing flexibility. It is not something easily cured by a good night’s sleep.
Jaime Seltzer, #MEAction’s Director of Scientific and Medical Outreach, shared in a recent interview with Infection Control Today: “There is now abundant research showing that pushing through this disease not only doesn’t work, but it appears to make patients worse off, possibly in the long term. Post-exertional malaise appears to be a metabolic or immune reaction or both. It is not possible to simply push more and more exertion on the patient and have them regain ability.
Community Descriptions of PEM
It can be hard to explain if you have not experienced the full body assault that is PEM but we are going to try with help of examples from the community. We would love to hear your examples as well.
“PEM is just like someone flipping a switch and every last bit of energy you have is completely drained away. When I have a rare good day I am completely surprised at how light my body feels — like I could float away. When PEM strikes, I feel like lead has been pumped into my veins.”
“I feel awake but comatose. It hurts to move. I CAN’T move. My body is just done and there is nothing my mind can do about it. It’s like my body is a magnet to the bed. The pull of gravity seems heavier. It feels as if I just ran a marathon, except I didn’t.”
“My husband asked me to explain how I feel when PEM hits…all I could think of was to liken it to being weighed down so heavily, that I can’t find the way to move or speak properly. I can see things going on, but processing takes ages, and speech goes. My jaw starting to hurt is often the first symptom of a PEM flare.”
“It’s a strange and varying feeling, which is why we have trouble pinpointing it. But even since my beginning stages, I could physically feel the depletion of energy. Like your energy bank is lowering and various functions are going into shut down mode due to insufficient power. So as they shut down one after another the structure weakens as a whole.”
“Sometimes after just talking on the phone, I am almost in tears as my muscles cave and weaken, my eyes become heavy, my heart is erratic, my body becomes extremely uncomfortable, and my brain no longer functions properly. I go from feeling functional to bedridden until my battery is recharged. I can lose days that I thought were going to go well.”
Do any of these descriptions resonate with you? Those are just a few examples recently shared with us. We hope that helps describe the reality of PEM. Thanks to the people with ME and Long Covid who shared. We would love to hear your descriptions.
We must mention #StopRestPace if discussing PEM. PEM is why we must stop, rest, and pace. Pacing is a self-management strategy for activity. It is not a treatment or cure but it can prevent further deterioration. When you pace for ME/CFS you are active when able, and resting when tired. Although this level of activity will look radically different from pre-illness levels of activity. You will need to plan extra rest ahead of activities and practice radical rest. It sounds kind of simple when you explain it but it is difficult when put into practice. When you first become ill with PEM through ME, what you can physically do has just radically changed and that means radical adjustments. That is where pacing comes in. The goal is to do as much as you can SAFELY. “Safely” just looks A LOT different.
Wow! You made it to the end. Thanks for reading. We would love to hear what facets of ME you would like featured on future Fridays where we discuss more facets of ME.