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

More Exciting Happenings During May Momentum


The Second Annual May Momentum continues with tremendous energy and enthusiasm. In the first half of this month, we have celebrated and stood together to raise awareness and critical donations for research.

Thank you to everyone who has already taken part in the May Momentum actions. We still have a couple of weeks to go. Please join us and get involved. Whether you share a post on social media, host a fundraiser, or talk to friends about OMF, at every level, your actions make a positive impact.

Together we can, and will, end ME / CFS!

With hope for all,

Linda Tannenbaum
Founder & CEO/President

Millions Missing 2019 Actions

Hundreds of Millions Missing events were held around the world. Thank you to all the patients, caregivers, family members, and allies that joined in, and to MEAction for coordinating this important effort. Here are a few highlights from Millions Missing event around the globe.

Ronald W. Davis, PhD, and Christopher Armstrong, PhD, spoke at the May 11 Millions Missing San Francisco, California event. This event was shared on Facebook live. Watch Millions Missing San Francisco here.

Millions Missing Glasgow | Stuart Murdoch OMF Ambassador Stuart Murdoch sang loudly on May 12, headlining Millions Missing Glasgow, Scotland. Stuart, lead singer for Belle & Sebastian, joined the protest and participated in the “lie down protest” in George Square. (photo credit: Evening Times Online) Read more here.
Millions Missing New York | Amy Carlson, Omar Wasow OMF Ambassador Amy Carlson and Omar Wasow joined the Millions Missing New York on May 12 to raise awareness.

Researchers To Gather In London

UK charity Invest in ME Research is again organizing a Conference Week in London, May 28 – 31. The events include:

  • 3rd Thinking the Future – Young/Early Career Researcher Conference – Aimed to develop an international network of young researchers and to encourage collaboration and support for these early career investigators.
  • 9th International Biomedical Research into ME Colloquium – To encourage biomedical research into ME / CFS and international collaboration amongst researchers.
  • 14th International ME Conference – Providing an opportunity for researchers, clinicians, healthcare professionals, patient group representatives, patients and carers to network and share information on ME / CFS. OMF will host a table to greet all of the registered participants.
  • European ME Alliance (EMEA) AGM – Bringing ME / CFS groups from 15 European countries working together.

As one of the sponsors of this year’s events, OMF is proud to have a tremendous presence at the upcoming meetings. Scientific Advisory Board members attending include Ronald W. Davis, PhD, Jonas Bergquist, MD, PhD, Øystein Fluge, MD, PhD, Maureen Hanson, PhD, Olav Mella, MD, PhD, Daniel Peterson, MD, Ronald G. Tompkins, MD, ScD, and Wenzhong Xiao, PhD. In addition, Linda Tannenbaum and Christopher Armstrong, PhD, will be attending. Drs. Davis, Fluge, and Tompkins will be speaking at the public day.

We look forward to sharing updates from the conference.

Finding Clarity: Harvard ME / CFS Collaboration Symposium

If you are in the New England area, join us at the inaugural Harvard Collaboration Public Symposium. Meet members of our collaborative team in person. Space is limited. Confirm your seat now. Make your reservation here.

Saturday, June 8, 2019
1:00 – 4:00 PM
AMC Assembly Way

Isle of Man Patients Secure Government Support

Two years ago, Linda Tannenbaum kicked off the 2017 End ME / CFS Worldwide Tour in the Isle of Man (IOM). There, she met with the ME Support Isle of Man leadership, Celia Marshall (Chair), Craig Morris, and Phil Gawne, members of their patient community, and key members of Parliament. Dedicated volunteers have continued nonstop with steadfast advocacy efforts.

Their efforts are making a change. Craig Morris shared with us that since their efforts started in 2014 the petition is now up to 1,755 signatures (a tremendous number from a population of about 85,000, approximately 350 of whom have ME). “We’ve been campaigning hard since 2014 for better training for GPs and for an ME service so that people with ME can be quickly diagnosed and given the best advice as early as possible,” said Craig.

It was recently announced that the IOM government has pledged to create multi-disciplinary services for ME / CFS patients by 2020. This is a tremendous step forward in the recognition of ME / CFS and the lives of patients on the IOM. OMF is honored to partner with the ME Support Isle of Man to improve the lives of and care for all ME / CFS patients.

2017 End ME / CFS Worldwide Tour Visit



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.


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 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.


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.


Heather Ah San

Development and Communications Manager