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

Newsletter June 2021

Thank you for your support during #MayMomentum!

Thanks to our community’s generosity and shared dedication, our fourth annual May Momentum campaign was a huge success. Through individual donations and personal fundraisers on Facebook, Instagram, Twitch and other platforms, we raised over $175,000 for critical research into ME/CFS and related chronic, complex diseases!

We are so grateful to everyone who donated and fundraised on our behalf — the challenges are real, and the momentum continues because YOU are on our team!

Throughout May, we proudly announced new updates that give us reason to be hopeful:

Your contributions, small and large, add up to make a real difference in supporting these critical projects and a team of dedicated OMF funded researchers. On behalf of all of us at OMF, we are truly thankful for your belief in our mission to return millions suffering worldwide to the healthy lives they deserve. With you on our team, we will never give up until answers are found. Thank you for being a part of our OMF family.

OMF receives 2021 “Top-Rated Nonprofit” award! 🎉

Thanks to your touching reviews, Open Medicine Foundation has once again received a “2021 Top-Rated” Badge from GreatNonprofits.org!

GreatNonprofits, the leading platform for community-sourced stories about nonprofits, honors highly reviewed nonprofit organizations with their 2021 Top-Rated Awards.

OMF’s 2021 GreatNonprofits badge proudly demonstrates our commitment to transparency and serves to increase the visibility of our work and expand our network of generous supporters.

We are truly grateful to have received such moving responses from our community!  Thank you for supporting our mission to end ME/CFS.

View OMF’s GreatNonprofits profile and leave a review of your own.

Use your cryptocurrency to help change the world!

In 2018, we received a $5 million Bitcoin donation from an extremely generous donor who wanted to help change the world. It transformed OMF forever, allowing us to launch our global collaborative research network. If you have Bitcoin, Ethereum or other cryptocurrencies, you can easily donate directly to OMF and receive a tax deduction, while significantly supporting the advancement of research to help millions of people impacted by chronic, complex diseases.

Cryptocurrency donations help speed up research and advance technology for research, clinical care, and educating physicians. Just as cryptocurrency is at the forefront of innovative financial instruments, OMF is at the forefront of innovations in research and healthcare.

Open Medicine Foundation has the bold mission of solving and breaking the cycle of chronic, complex diseases such as ME/CFS, Post COVID, Post-Treatment Lyme Disease and Fibromyalgia. Vital to this mission is to financially support outcome-directed research at global centers that work openly, urgently, and collaboratively with each other and the broader research community, with the goal of translating findings to treatments.

 Learn more and donate today

Calling all Twitch creators!

Streamer lends a hand to OMF’s cause!

If you are a Twitch creator, you can now use your live streaming as a powerful platform for fundraising! OMF is proud to be a registered organization on Streamlabs Charity!

Streamlabs Charity is a new platform that simplifies the process of live streaming for a charity via Twitch, Youtube, or Facebook. Follow these instructions to start your first live stream fundraiser for OMF on Twitch using Streamlabs Charity!

Today we are honored to profile one of our first Twitch fundraisers, Run by Patrick, from the UK. An ally to people with ME/CFS and Twitch content creator, Patrick shares what inspired his OMF fundraising efforts:

“Fundraising on Twitch is something I’ve done for around six months now. Every penny that I make through streaming on the site is given directly to the chosen charity of the month. OMF was suggested to me by one of my viewers and a fellow streamer. They are currently living with ME/CFS and made me aware of OMF’s incredible work. There was an outpouring of support for this charity from several others who watch my stream and have friends or family struggling with their day-to-day lives due to ME/CFS.

“I only became aware of ME/CFS within the last couple of years. One of my partner’s close friends has suffered from this disease for many years, causing them to miss several years of high school and rendering them housebound for long periods. Since then, I have met many people through streaming and online games who have a connection to ME/CFS, and hearing their stories inspired me to do what I can to help. I may not be the largest streamer, but I just want to do what I can to help OMF in their research.

“”ME/CFS is a disease that needs to be taken seriously. There are no approved treatment methods for this disease, but that doesn’t mean that the people suffering should be pushed aside until a cure is found. Education and awareness are so important. Family, schools, and friends should be aware of the issues faced by people with ME/CFS.

“With enough research, I truly believe a cure for ME/CFS can be found.
It’s just a matter of time.”

Planting seeds of hope:

A mother’s plant sale benefits research

Today we share the story of a mother and daughter in Canada, the power of family, and their efforts to support critical research into ME/CFS.

In 2017, Rebecca’s life was turned upside down when she came down with an illness that prevented her from leaving her bed and going to work. Soon after, she was diagnosed with ME/CFS. Over the next six months, Rebecca found herself completely confined to bed, sleeping up to 36 hours at a stretch. “I was barely awake, could not speak, or lift my head,” Rebecca explains. After the initial six months, she began to improve slowly. Although still primarily bedbound, on occasion, Rebecca can now watch a movie with her kids, shower, or send emails. “Never all three,” she explains. “I have to choose very purposefully how to spend what little energy I have each day. It makes life very slow.”

Rebecca’s mother, Margaret, soon came to realize the gravity of Rebecca’s illness. Margaret explains, “My biggest challenge was to learn how ill my daughter was. Rebecca would tell me how tired she was. I would reply, ‘Of course you are. You have a job and a young family.’ I found out later that Rebecca was not just tired; she was mentally and physically exhausted. Rebecca was going for many diagnostic tests, and all the results were negative. We had no answers. When doctors tell you that nothing is wrong, someone like Rebecca thinks, ‘It must be in my head. I have to fight this and keep going.’ This made her symptoms worse over time.”

 

READ MORE

Join our global network of donors and advocates by supporting OMF funded research today. Together, we can accelerate research and find the answers necessary to win the fight against ME/CFS and related, chronic complex diseases.

 

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 six 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