About the Organizer
My name is Evan Erickson, and I was a thriving college music composition student Summer of 2024. Now living with severe Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), I am building Gifts for M.E. : a charity to provide carefully selected items to ME/CFS patients in need.
Watch my Spend a Week with M.E. video to learn about what it’s like to live with an underfunded, under-researched, and complicated disease that nearly 3% of Americans are suffering from. Scroll down to read my story.
An illness I never recovered from
In August of 2024, just following my summer job coordinating a concert series for a large music festival, I became sick with something I thought was ‘just the flu’. Life quickly turned into multiple doctor’s appointments, 7 rounds of antibiotics, and in of October landed me in the hospital with my liver and spleen almost dying. When the hospital took me in for a weekend and diagnosed me with mononucleosis, a viral infection seemingly everyone gets. I believed that was the end.
It has been one year, and I have never recovered from how I felt entering the hospital last October. 1% of mononucleosis cases trigger a complex neuro-immune disease with no known treatments called Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS, aka as M.E.), and I was unlucky enough to be one of those cases.
WHO I’M SUPPOSED TO BE RIGHT NOW
Pre-2025…
“Evan Erickson (b. 2003) is a clarinetist, composer, and engraver currently studying under Robyn Jones (clarinet) and Kamran Ince (composition) at the University of Memphis. He has been a finalist as a composer for the 2023, 2024, and 2025 ASCAP Morton Gould Award, selected to present at the College Music Society and North American Saxophone Alliance national conferences as a performer, and was awarded three distinctions at the University of Memphis as a Presser Scholar, an Award of Outstanding Achievement, and the Chamber Players Scholarship.”
ME/CFS HAS BROKEN MY LIFE
2025 has shattered and cast me into a two-room prison of paralysis, incessant pain, no human connection, and the inability to fully care for myself. I can barely even shower once a week.
When people hear my voice or see my face on a short call, they always tell me:“You sound fine.”
Melted… like Oobleck
Just before I became bedbound, I completed a new orchestra piece called Oobleck. It is named after a substance that stays solid under pressure but melts into a sticky mess the moment that support is gone. The piece felt prophetic, as within days of finishing it, my life began to slowly melt away because of my new illness.
Oobleck was one of three pieces selected by the Memphis Symphony Orchestra to premiere in February 2025. This was supposed to be a celebration of my biggest accomplishment to date, but it felt like a funeral for my old life —taking place at my school with my friends in the audience, a dozen hand-crafted signs making jokes I would laugh at, and my teacher standing on stage to read a letter I typed out 900 miles away.
Not my dream life
I really wanted to be applying for a master’s degree to study music in Turkey, but it has now been a year of being confined to a bed in daily pain. I often close my eyes and feel myself walking around campus, going on late-night fast food runs with my friends, and turning my university’s multi-million dollar music building into a personal movie theater…
First day out in the sun with no pain :)
Where I am now
After lots of trial and error, I have been able to find better fits for my lifestyle stuck laying down with ME/CFS. Monitor arms, gravity chairs, e-ink screens, and certain migraine medications are allowing me to handle doing computer work and making music for a few hours a week. Even when my body can rise and crash like a torrential wave, there is still some joy worth fighting for.
Doing computer work outside.
Starting this charity
Gifts for M.E. is a passion project building on the nonprofit work I was doing in college. Not everyone with ME/CFS gets to have a care team that believes them or gets their Mom as a caretaker. I have found great support and community online from other people experiencing my illness. It’s my goal to use my talents to put up a fight advocating for ME/CFS patients to be seen.
My Ninja Creami is my lifeline.