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

A Powerful Message from Whitney Dafoe

We are honored to share an excerpt from
a message from Whitney Dafoe…

“My name is Whitney Dafoe and I have severe Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS). I have had symptoms for 15 years but have slowly gotten worse because of a lack of beneficial treatments.

I am only able to communicate by taking a drug called Ativan which temporarily alleviates some of my sensitivity to contact with others. It takes hours to communicate these posts and makes me worse, but I do it anyways because most people with severe ME / CFS simply disappear into dark rooms never to be seen or heard from again and someone has to tell our story. We exist.

ME / CFS is an extremely devastating illness that takes and takes and takes until there is nothing left but flesh and bone. I’ve lost my friends, my career, my hobbies, everything that brought meaning to my life and all sense of humanity.

Right now, a viral pandemic has spread throughout the world.

Everyone reading this should be worried not just of catching/surviving this viral pandemic but what might happen to their life even if they catch it and survive. Because one of the known triggers for ME / CFS is a viral illness. A huge population of ME / CFS patients got the virus Mono and never fully recovered, instead they wound up with ME / CFS.

Things have begun to shift thanks to a group of renowned scientists from around the world, including many Nobel laureates, deciding to take on the illness. Led by one of the greatest scientific minds in the world, Ronald Davis, & working out of Open Medicine Foundation, they are determined to #EndMECFS.

Right now, OMF has funded an ambitious study taking blood from Coronavirus patients and monitoring their progress so they can see, in real time, the transition from Coronavirus to ME / CFS and gather huge amounts of medical data. This could be a turning point to figuring out how ME / CFS gets triggered and how to stop it before it starts.

Everyone should be terrified at the prospect of getting ME / CFS. No one who gets the Coronavirus is safe. But you can do something about it to help in case you do. Please donate to OMF today.

Read the full content of Whitney’s Post

This sweeping photograph, “Tiny Rainbows,” was taken by Whitney Dafoe before the onset of ME / CFS. Please visit his website to see more of his work: http://www.whitneydafoe.com/

 


 

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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