Newsletter March 2021

OMF is proud to have a community of patients, caregivers, and allies, all united by our shared mission to end ME/CFS. Today we would like to share the story of friendship, and showcase the efforts of an ally who is fundraising for Open Medicine Foundation on behalf of a friend with ME/CFS. Amy and Lucie have been friends for a decade. Four years ago, Amy’s life changed seemingly overnight with the sudden onset of ME/CFS. Amy explains, “I went from being a fully functioning mother of a toddler, who exercised every day, to being unable to walk for more than 50 meters without feeling like I was going to collapse.” Now, Amy’s life has become a struggle to balance motherhood with the crushing weight of ME/CFS. In the wake of this devastating development, Amy’s friend Lucie has taken action. This coming fall, Lucie plans to run the Yorkshire 10 Mile to fundraise for OMF. Lucie says, “I’ve never been much of a runner, but I wanted to do something to get out of my comfort zone and raise money for ME/CFS research. Even if the event is cancelled due to COVID, I still plan to run 10 miles in October to fundraise for OMF.” Reflecting on her friendship, Amy says, “I am incredibly fortunate to have kind and compassionate friends like Lucie. I have managed to travel a little bit because my friends push me in a wheelchair. This is great therapy because I’m usually stuck inside the house without much social interaction.” This past year with COVID lockdowns occurring worldwide, many people now have the shared experience of being confined inside their homes for extended periods of time. Amy explains, “The lockdowns have shown people how difficult it is to be isolated without the promise of seeing friends or family. This gives them a tiny glimpse into how lonely it can be for ME/CFS sufferers who are housebound for years on end. Today I don’t get as many comments saying, ‘I’m so tired, I’d love to spend all day in bed’. Friends like Lucie understand that my situation is a lot more serious than just being tired.”

“Amy inspires me with her resilience and gratitude for the good days. If she can find positivity while living with ME/CFS, then it’s not a huge task for me to run this race in October 2021.”

Despite it all, Amy and Lucie both remain hopeful. “OMF is my number one source of hope,” Amy says. “Hearing the results from various OMF funded studies gives me hope that a treatment or cure may be found.  It also makes many ME sufferers feel as if someone is on our team! Having someone fighting for our health is so valuable when we don’t have the energy to do it for ourselves.” Fortunately, Lucie is on Amy’s team. A wonderful advocate for people with ME/CFS, Lucie is determined to help fundraise for a cure. “Amy inspires me with her resilience and gratitude for the good days” Lucie says. “If she can find positivity while living with ME/CFS, then it’s not a huge task for me to run this race in October 2021.”