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

End ME / CFS Worldwide Tour impressions after a unique event in Italy

“My heroes, the fighting patients, parents & caregivers.”

Dear Friends,

We arrived Thursday, June 7, on our last stop of our End ME / CFS Worldwide Tour in Zanè, a town in the province of Vicenza, Veneto, Italy. We were welcomed with a lovely dinner we shared with Giada Da Ros, President of the CFS Italian Association, Paolo Maccallini , Dr. Eligio Pizzigallo, and other new friends.

Giada, also coordinator of OMF’s Italian Translations Team, did an absolutely amazing job planning the event on Friday with the teams of the CFS Associazione Italiana onlus and the Associazione CFS onlus.

L: Linda Tannenbaum, Prof Pizzigallo, Giada Da Ros, Paolo Maccallini, & friend;
C: Linda, Giada;
R: Linda, Prof Pizzigallo, and Prof Umberto Tirelli

This event was in many ways quite unique in our field. Giada and her colleagues managed to have it approved as a training session for medical professionals and journalists, and they also received endorsements from five government institutions, including the “Italian NIH!” The room was packed with approximately 150 people; about half were patients, parents, and caregivers. Many drove for hours to be there, and some came all the way from Germany. The rest of the room was filled with journalists (about 25) and doctors/researchers. The eight speakers were excellent, and I was fortunate to have my talk translated as I spoke by translator Valentina. After the talks, we shared a lovely dinner at the same venue.

“It was a smashing success. We were joined by 150 people, who were thrilled to hear all the excellent presentations. Linda’s presence made the difference and we are confident it made a huge impact for the awareness of the community, medical and at large. We are very happy with the engaging and productive afternoon we spent together,” Giada Da Ros, President CFS Italian Association.

L: Linda presenting; C: Friends from Italy & Buenos Aires:
R: Girolamo Carollo, President of the Associazione CFS

While preparing for my travel home via New York for a few more meetings, I am reflecting on our End ME / CFS Worldwide Tour in the U.S. and Europe these past few months. There are several important reasons why I keep doing these talks. It is part of OMF’s goal – which primarily facilitates and funds research — to deliver hope, and to share, educate, and raise awareness.

A highlight of these talks is that some patients leave their homes for the first time in months or years and actually get to meet other patients, some of whom they have emailed but never met. I personally enjoy meeting so many new friends.

In the Netherlands and Italy, several journalists, doctors, and government officials now have a better understanding of this horrific disease. Another benefit is that I get the opportunity to meet with other researchers and doctors who speak at and attend these talks and learn what they are doing. We are grateful that throughout our tour, all expenses are covered by the hosting organizations, so all the money we raise on the tour can go to accelerate this urgent research.

We are all in this together. Don, myself, and all our OMF colleagues can’t thank the organizers enough for their excellent work and warm welcomes. Thank you from the bottom of my heart.

With hope for all,


Linda Tannenbaum

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