Open Medicine Foundation (OMF) is pleased to announce that we have joined 49 new partners in the fight to return millions of Americans to health.
The Long COVID Alliance is a network of patient advocates, scientists, disease and public health experts, along with drug developers. We have joined together to leverage our collective knowledge and resources to educate policy makers and accelerate research of post-infectious illness.
The goal of the Alliance is to transform the current understanding of Long COVID and related post-infectious illnesses such as ME/CFS. OMF has already begun a large-scale study of Long COVID transitioning to ME/CFS, supported by private donors.
To learn more about the Long COVID Alliance, visit www.LongCOVIDAlliance.org. We will continue to share more updates and verified information as they are available.
Dr. Rosa Maria Pari Ñaña, a brilliant young physician from Peru who is researching ME/CFS at the Harvard Affiliated Hospitals, has been interviewed on a new episode of ME/CFS Alert with Llewellyn King!
In case you missed it, Dr. Pari Ñaña’s work was previously highlighted by OMFCA as one of two young researchers assisting with the OMF funded Harvard ME/CFS collaboration that was awarded a prestigious grant for ME/CFS research by the Department of Defense’s Congressionally Directed Medical Research Program.
In the newest episode of ME/CFS Alert, she discusses how she has become involved in the field of ME/CFS research, her belief that a cure will be found, and more.
Thank you to Llewellyn King and Dr. Rosa Maria Pari Ñaña for making this inspiring interview available to the community!
The Center for Disease Control has just published a new Patient Toolkit for people with ME/CFS!
The toolkit provides handouts and educational resources to help people with ME/CFS, their family members, and their caregivers manage and prepare for visits with their healthcare provider.
We hope this toolkit and the information available on the ME/CFS Clinician Coalition website will help people with ME/CFS confidently navigate their care.
If you have a birthday or other special occasion coming up, please consider creating a fundraiser for OMFCA in honor of your special day. Check out our digital fundraising toolkit for everything you need to set up your fundraiser on Facebook, CrowdChange or Twitch in as little as 60 seconds!
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.”
If you are able, please consider contributing to our effort to
uncover research-based answers.
Help us improve the quality of life for all sufferers of ME/CFS and other
chronic complex diseases, such as Post Treatment Lyme Disease Syndrome