Dear OMF Community,
My name is Anna Carina, and I live with my family in Vaxholm, Sweden. In 2016, our son Lucas fell ill with ME/CFS after having a glandular fever at the age of 13. We went through the same story of disbelief, stigmatization, and blame that many of you have also experienced.
A few years later, and after a lot of fighting, Lucas was finally able to acquire adequate medical help at Stora Sköndal ME/CFS Specialist Center in Stockholm before it was shut down.
Today, Lucas is 21 and his condition has gradually gotten worse. Especially during these last two years, after catching a mild COVID-19 infection, his health has rapidly deteriorated with all the ME/CFS symptoms we all know far too well. The invisibility, isolation, and feeling of helplessness in our situation add extra hardship to the already brutal living conditions of ME/CFS itself.
What I want to express to you is how much Open Medicine Foundation means to me as a parent and caregiver to our son.
The fact that OMF has helped the ME/CFS community come together, and focuses on collaborative research to make a real difference for this community is wonderful. That is, in my mind, our hope, and the only protection we have against the hopelessness that is otherwise eating us alive. It won’t make up for the neglect we are facing, but none of us can afford to not do everything we possibly can to contribute.
The information that OMF sends out regularly helps me keep my hopes up. Because of OMF, I receive something relevant to me in the crisis that is our everyday life. When the silence around ME/CFS is deafening, OMF talks to me about ME/CFS as something important and urgent. It makes me feel a little less detached from the reality our family cannot share with others.
When asked by OMF to tell our story, Lucas existed again for a little while. It helps me to keep him alive – the best I can – when he has already largely disappeared from this world. When all that is left is suffering in silence and isolation, I know that I am not alone. With OMF, I know that we are in this fight together.
I would like to thank every member of the OMF community who makes this life with ME/CFS a little less hopeless and lonely. And a huge thank you to Whitney, Ron, and Janet, who have shared their heartache and struggles in favor of our joint cause.
Thanks to OMF, I have hope. We have to continue funding research. We have to endure. There is hope, and we are creating it together.
With love and gratitude,
Anna Carina for Lucas
Anna is one of our dedicated Hope Builders. Her heartfelt story is a poignant reminder of why we must persist in our fight against ME/CFS & Long COVID.
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