Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Post COVID .

Newsletter March 2021

OMF joins the Long COVID Alliance
to accelerate research for post-infectious illness

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 featured on a new episode of ME/CFS Alert!

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 OMF 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!

Watch it now

 

New ME/CFS Patient Toolkit from the CDC

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.

Fundraise for OMF on Twitch!

Are you a Twitch Creator? If so, you can use your live streaming as a powerful platform for fundraising! OMF is excited to share that we are now a registered charity on Streamlabs Charity!

 

Streamlabs Charity is a new platform that simplifies the process of live streaming for a charity via Twitch, Youtube, or Facebook. 


How to start your first live stream fundraiser for OMF on Twitch, using Streamlabs Charity:

  1. Follow this link
  2. Create your account with Streamlabs Charity. (You can also sign up with your Facebook, Twitch, or Youtube account.)
  3. Next, customize your fundraiser campaign for OMF: Here you can write a description, set your fundraising dates, and donation goal amount
  4. Once your campaign is published, you can now set up stream alerts for your charity donations. You can also get a donation goal bar as a stream overlay that shows the progress you’ve made towards your fundraising goal!

For more information, you can watch this easy step-by-step video tutorial on how to start a charity live stream using Streamlabs. 

For more information, watch this easy step-by-step video tutorial on how to start a charity live stream using Streamlabs.

 

Are you a Twitch user? Please let us know how we can help you maximize this powerful fundraising tool by reaching out at info@omf.ngo. Thank you for all the creative ways in which you help us to advance our mission to end ME/CFS!

Read more

Have an upcoming birthday?

If you have a birthday or other special occasion coming up, please consider creating a fundraiser for OMF 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!

Thank you for supporting our urgent mission to #EndMECFS!

OMF Community Spotlight:

A friend and ally’s race for the cure

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
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Help us improve the quality of life for all sufferers of ME/CFS and other
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Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

 

Averting a second pandemic:

Open Medicine Foundation leads groundbreaking international study of

Long COVID’s conversion to ME/CFS

AGOURA HILLS, CALIF.  — Open Medicine Foundation (OMF) is leading a large-scale international collaborative study investigating the potential conversion of Post-Acute Sequelae SARS-CoV-2 infection — more commonly known as Long COVID or Post-COVID Syndrome —  to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a chronic, life-altering disease with no known cause, diagnostic test or FDA approved treatments available.

Up to 2.5 million people in the U.S. alone suffer from ME/CFS; the COVID-19 pandemic could at least double that number. An estimated 35 percent of Americans who had COVID-19 have failed to fully recover several months after infection, prompting many to call it “a potential second pandemic.”

OMF recognized a familiar health crisis emerging, one with eerie similarities to ME/CFS. This crisis presented a unique opportunity to understand how a viral infection — in this case COVID-19 — may develop into ME/CFS in some patients. The goal is to find targeted treatments for ME/CFS patients and ultimately prevent its onset in people infected with SARS-CoV-2 or other infections.

The federal government is only now investing in Post-COVID research, with no focus on its connection to ME/CFS. OMF has already engaged researchers for the largest-scale study of its kind, solely supported by private donors who have contributed over one million dollars to date. When fully funded, the five million dollar, three-year study will be conducted across the globe at OMF funded Collaborative Research Centers, led by some of the world’s top researchers and ME/CFS experts.

BACKGROUND

In a significant percentage of patients, infections preceded their development of ME/CFS.  For example, according to the CDC about one in ten infected with Epstein-Barr virus, Ross River virus, or Coxiella burnetti develop symptoms that meet the criteria for ME/CFS.

THE STUDY

The ability to follow the development of ME/CFS from a known viral infection is unprecedented to date and crucial to researchers’ understanding of the disease. The focus of this study is to find the biological differences between persons returning to good health after COVID-19 and persons who remained ill more than six months after infection and developed ME/CFS.  Understanding these alterations in key pathways can lead to groundbreaking discoveries including new biomarkers, drug targets, and prevention and treatment strategies.

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About Open Medicine Foundation

Established in 2012, Open Medicine Foundation leads the largest, concerted worldwide nonprofit effort to diagnose, treat, and prevent ME/CFS and related chronic, complex diseases such as Post Treatment Lyme Disease Syndrome, Fibromyalgia, and Post COVID. OMF adds urgency to the search for answers by driving transformational philanthropy into global research. We have raised over $28 Million from private donors and facilitated and funded the establishment of five prestigious ME/CFS Collaborative Research Centers around the world. To learn more, visit www.omf.ngo.

CONTACT:

Heather Ah San

Development and Communications Manager

1-650-242-8669

heather@omf.ngo