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

Continuing The Worldwide Tour to Spread Hope Around the U.S.

Dear Friends,

After my European Tour of Hope in May/June, I continued this fall in the USA and that has left me at the end of this year with wonderful long lasting impressions! The last months offered me many occasions to interact again with patients, parents, support groups and patient leaders, not only to inform them about our latest research updates and give them hope for a better future, but also to listen to and learn from them…as you know, one of our main goals. It humbled me and reminded me of the very important task OMF has, but more importantly, the patient community also gives me a lot back in return with their incredible “showers of warmth and gratitude”. I am inspired by you all.  Thank you for that!

My most recent stops on our Worldwide Tour were in Minnesota, California (Dana Point and Fullerton), New York City and Boston. In Boston we had a full 45min of Q & A,

which is a wonderful format, that gives me time and space to elaborate on details and to give even more hope to patients. It was such a pleasure and honor to meet with so many new – and sometimes “old” – friends and admire their hard work. It is truly inspiring to see the incredible work of local patient groups/organizations and patient activists. In my experience – being a mother of a sick daughter – I feel that for every patient and parent it is crucial to have that sense of belonging to a community and get support, strength and useful information from each other. I encourage all American patients and caregivers to sign up at their local groups, just like many do in Europe, it will help you immensely. You are not alone in your battle, never forget that!

I am looking forward to continue my Wordwide tour in the beginning of next year in Los Angeles on February 11th. Come join us if you are in the neighborhood. I want to express my sincere gratitude to the organizers of all of the patient meetings that I went to these last months and for your warm welcome. Seeing you all, reminds me of the important task we have at OMF, and we will continue to work hard for that, until answers have been found!

Warmly, with hope for all,

Linda Tannenbaum, November 2017

Photos: Lianne & Bob Beyerl with Linda Tannenbaum Minnesota; Linda, Amelie Hicks, Candi Pastorek & Mary Gelpi Dana Point; Left to right: Linda & Terri Wilder NYC; Charmian Proskauer & Linda Massachusetts; Harvey Carden & Linda CSUFullerton.

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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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 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