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

Inga’s #MayMomentum Story

A Life in Stop Motion: A Film Animator & Research Chemist Shares her Battle with ME / CFS

My name is Inga and I’m an Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) patient and OMF supporter.

The scientific research that OMF conducts and funds is a daily source of hope for me. Their research into the biological dysfunction of various systems in ME / CFS patients gives me something concrete I can share with friends and doctors to help explain how serious and real the condition is.

Before I got sick just over 6 years ago, I was studying to become a research chemist and working in the lab all day. I used to go to a Pilates class four mornings each week before heading in to uni. I haven’t been able to work since becoming ill so if a cure can be found for ME / CFS I am most looking forward to having a career that would give me financial independence and a sense of purpose. I would also love to go back to ballet class and travel so I can practice my French again.

OMF’s research into different potential diagnostic tests for ME / CFS is what gives me the greatest hope and sense that we are gathering momentum towards ending the illness. It is the first significant scientific hurdle that must be overcome and will give patients tangible proof of their illness and consequently dramatically improve the way society treats these patients.

For the past few years, I have been using what little energy I have to work on a paper stop motion animation called An Existence Project which portrays what life is like for someone living with a moderate form of ME / CFS. I have been cheered to see the tone of conversations in the media and stigma around the illness shifting. However, much work needs to be done to communicate the serious nature of this illness to the public. I hope my animation will play a small part in creating this change. To follow the progress of my animation search @AnExistenceProject on Facebook or Instagram.

Let’s #endMECFS together. Please visit www.omf.ngo/MayMomentum to find out more.


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