Step into spring as a Hope Builder! With the arrival of a season that symbolizes renewal and progress, we at Open Medicine Foundation are inspired by the strength of those living with ME/CFS and Long COVID. This season of new beginnings is the perfect opportunity to step up and make a difference.
Become a Hope Builder! You will join a special group of dedicated supporters who contribute monthly. Your donation provides a steady foundation for groundbreaking research and support programs.
Today, we are honored to share with you an inspiring story from one of our dedicated Hope Builders. Meet Helen, a cherished member of our Hope Builders community. Helen is an OMF supporter and the mother of Manon, who at the age of 33, faced an unexpected life detour due to ME/CFS. Her narrative mirrors the journey of many families we stand alongside.
We Live in Hope: Manon’s Story
“My amazing 33-year-old daughter, Manon, has been battling ME/CFS since 2015. Discovering OMF was the first time in all our investigations into this devastating illness that we felt there was genuine hope.
Manon’s initial three years were horrific. She had recently graduated from Edinburgh University. She was in Hong Kong for her first job with her partner, Hugo, when ME/CFS struck suddenly and ruthlessly. We had no choice but to bring her home. She could neither walk nor sit for two years. Engaging in conversation was nearly impossible. We battled the BPS group of psychiatrists in London, desperate to prove it was all in her head.
With patience, her partner and our family provided support and the space for Manon to explore various avenues of recovery. Mestinon proved crucial then and continues to be so to this day. The introduction of a wheelchair became critical.
Despite her disability, Manon has found a way to work part-time from home. Her partner does everything for her to give her the headspace to flourish at work. As time has passed — nearly ten years for her — we’ve learned to distance ourselves from constantly looking at research papers and attending conferences on ME/CFS.
Hope is a challenge, and I hope our trust in OMF will bear its fruits! That’s why I am calling on the OMF community to join me in becoming a Hope Builder.”
