At our May 12th demonstration on the Mall, #MEAction set up 300 cots to represent the millions of people living with ME/CFS and Long COVID. Hundreds of people across the country sent in personalized pillowcases with their stories to display on the beds. Scroll down to see all the amazingly creative pillowcases.

An illustration woman with a brace on a white pillowcase

In May, we dedicated a cot to those we have lost. We left the pillow empty and placed the sign on the cot, above. We carry them with us into each action, and hold them in our hearts with each decision we make.

An illustration woman with a brace on a white pillowcase

I'm a documentary filmmaker who developed mild ME in 2017 & became severe after likely Covid in 2020. The ME & Long Covid communities have been a lifeline for me during these years of grieving, so I used this pillowcase as a meditation practice, sending love & gratitude to a specific person in our community with each stitch. I also reserved stitches for the millions I don’t know but whose suffering is close to my heart.

An illustration woman with a brace on a white pillowcase

So much has changed since I made this pillowcase 5 months ago. I gained a ME diagnosis and have lost so much in return. I've lost the ability to care for myself, the ability to walk, the ability to leave my house as I please, and the ability to return to work. Every time I try to adjust, ME finds something else to take from me. What will I lose next? Will I ever get my life back?

An illustration woman with a brace on a white pillowcase

On 12-18-2020 my life ended after getting COVID-19 at work. I medically retired early due to me being mentally and physically disabled from this awful virus that almost killed me. I’ll never be able to work again. My hopes for my future is now dark and dreary. I NO longer leave the house, bedridden and on oxygen. NO more going shopping, vacations, restaurants, holiday parties, or socializing.

An illustration woman with a brace on a white pillowcase

In 2007 ME/CFS brought devastation to all areas of my life. I am no longer able to provide for myself or even function without a home care aide. Knowing the extent of the suffering and yet seeing thousands of people going through this at the same time, due to Covid-19, is heartbreaking. My activism may look different to you but I will keep fighting for myself, my family, and my community.

An illustration woman with a brace on a white pillowcase

Upper text reads: “How it Started”

This submission visually depicts the stark contrast of my niece’s life before and after getting Covid 19. #LongCovid can be devastating even to a young person with no previous health conditions. I’m proud of the person that she was but I’m also very proud of her survival, one day at a time.

It took me 11 years to find an instrument I could play from bed. I can play ukulele for short periods without crashing. Finally I have music in my life again.

An illustration woman with a brace on a white pillowcase

Since making this, the statement “I have so much more to contribute” has continued to echo in my mind. The world is missing out on all that we could do and be and give; we all miss out.

An illustration woman with a brace on a white pillowcase

Deborah Main, sick for 30+ years, is still fighting for a cure! I can sometimes make pretty pillows, but I'm capable of so much more in life if I didn't have ME/CFS.

An illustration woman with a brace on a white pillowcase

I got the worst illness of my life in 2011 and just never got better. I tried to just push through with every ounce of my being for years until I collapsed. I have been mostly bedridden since 2018. I am learning a new way of being: of stillness, of safety, of quiet reflection, and peace. I could not do this without my ME community, who are my precious lifeline.

An illustration woman with a brace on a white pillowcase

Long COVID replaced a life of work, caregiving, family time, and exploration with uninterrupted pain and sickness. Only effective treatments can restore my health, and only clinical trials can find effective treatments. Fund clinical trials!

An illustration woman with a brace on a white pillowcase

I am 55-years-old, single, never married, childless and I live with my parents. This is NOT the LIFE I had planned. 80% of my day is spent in bed. This is ME/CFS. #StillSickStillFighting Gratitude to my ME-peep (MEep) who created this pillowcase for me. For people with Long COVID – you are not alone. #StopRestPace

An illustration woman with a brace on a white pillowcase

I wanted to teach since I was six years old. I earned a History PhD on full scholarship from an elite university, but ME felled me a year later when I had only taught a few classes. In grad school we had to read a book a day. Now I can’t read at all. I lived car-free for 15 years and biked everywhere. Now I don’t leave the house.

An illustration woman with a brace on a white pillowcase

The front of my old Peace Corps shirt turned pillowcase details my career path prior to becoming disabled with Long COVID in early 2020. The back of the shirt is embroidered with knots and it reads: # of knots: 1,128 One for each day I've been sick with Long Covid and ME/CFS

An illustration woman with a brace on a white pillowcase

Daniel has lost so much to Long COVID. As a couple, we also grieve: for the adventures we no longer go on, the missed milestones with friends and family, his ability to caregive when my chronic illnesses flare, the steps we haven't yet been able to take as a couple because so much of our lives are on hold. This illness cannot take our love, but it has taken so many things we've loved together.

An illustration woman with a brace on a white pillowcase

My illness was triggered by a bacterial infection that went systemic after it was misdiagnosed in 1997. In 2003, my primary doctor told me to walk daily. I was desperate to heal so I pushed myself to walk. I went from moderate to severe. After taking Valacyclovir in 2013, I returned to moderate, but a Covid infection in 2021 has me toggling between moderate and severe. We need the medical establishment, both medical education and doctors, to take this illness seriously.

An illustration woman with a brace on a white pillowcase

I’ve had ME/CFS for 31 years. That’s 11,322 days. I got sick after a respiratory virus. 25 years of debilitating illness until I was diagnosed. By then I was 95% housebound. 6 years later I’m 95% bedbound. 4 years ago our teenage son was diagnosed with ME/CFS. 1 year ago our youngest son was diagnosed with ME/CFS too. We’ve lost so many days. We’re still sick. But we’re still fighting.

An illustration woman with a brace on a white pillowcase

I've been sick so long, since January 1990, that I don't even recognize my former self. I’ve lost the ability to do so many things. I feel like a caged butterfly beating its wings against the bars. - Marjorie

An illustration woman with a brace on a white pillowcase

When I developed Long COVID and ME, I lost my life without dying. I aimed to hike the Compostelle in my 40s. Instead, I now grieve being housebound, and struggle to take care of myself and my young child. From bed, with my limited energy, I advocate for better research, clinical care and supports for the #MillionsMissing, so we may one day get back to our full lives we so desperately miss.

An illustration woman with a brace on a white pillowcase

Bowed but not broken. Homebound with ME/CFS since 2017 but still determined to improve my health and get back to an active life.

An illustration woman with a brace on a white pillowcase

How many years until meaningful treatment? Catherine Romatowski, 2023

An illustration woman with a brace on a white pillowcase

I worked hard & was happily productive: demanding global job, 10 year caregiver for my Mom, sang, hiked, cooked, gardened, rescued kitties, did citizen science, gave to charities. I met the love of my life. Life was GOOD. Then, breast cancer. My systems tanked during treatment, and I developed ME. Now I live- reclined in one room, always sick, totally dependent, dreams gone, losses immeasurable.

An illustration woman with a brace on a white pillowcase

Molly Freedenberg has struggled with ME/CFS since she got sick with a virus in 1995 and never recovered. She has gotten incremently worse for nearly 30 years, until becoming housebound in 2017. A former journalist, dancer, event producer, world traveler, fire performer, festival-goer, live music lover, singer, reader, community-builder, and people-loving extrovert, Molly now spends her days alone, in bed, lucky for days she can write, read, text, or use social media.

White pillowcase with red lettering that says, "COVID isn't over for everyone."

My message shows my anger at so many who have just moved on, selfishly disregarding the pain and suffering of Long Covid patients and those who love them and ignoring the fact that more and more people will continue to be affected. Last week, an acquaintance told me she'd never heard of Long Covid. HOW IS THAT POSSIBLE??? I'm grateful to all who are fighting to raise awareness and force action.

I have been missing since 1992 after a bout with Mono. I contracted ME, POTS, and NMH at that time. I was 16 years old. Now, over 3 decades later, I am still sick and still fighting. I have managed to get married and have 2 children, but I have had a very diminished life from the one I had envisioned for myself. I am currently on disability and about 80% homebound. ME took so much from me. We need to take bold action for research and a cure!