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

Meeting Friends and Collaborators at IIMEC13 in London

Dear Friends,

My husband Don and I left California on May 28 to embark for Europe again on our second annual OMF End ME / CFS Worldwide Tour, to discuss research, bring updates, share hope, ideas, and raise awareness. Being parents of a sick daughter, we are well aware of how important hope is for all of you with ME / CFS!

Our first stop was London, BRMEC8 and IIMEC13, and we were honored to be joined by six of our Scientific Advisory Board members. We were especially excited to have Dr. Ronald Tompkins there as well, since he will be leading our newly funded ME / CFS Collaborate Research Center at Harvard under the direction of Dr. Ron Davis.

London 2018 L to R – Linda Tannenbaum, Øystein Fluge, Jonas Bergquist, Ron Davis, Maureen Hanson, Wenzhong Xiao, & Ron Tompkins

There were about 20 countries represented at IIMEC13 and 14 at the science meetings. OMF had a table on the community day and Drs. Ron Davis, Ron Tompkins and Wenzhong Xiao joined me to meet and greet attendees. It was so wonderful to meet with old and new friends; it definitely feels like a reunion each time. There were friends from Italy and the Netherlands with which I will meet again soon, and some other countries approached me already to invite me for a next year tour visit. I felt deeply honored and humbled by these invitations.

L to R: Ron Davis; Don & Linda Tannenbaum; Mady Hornig & Wenzhong Xiao
L to R: Ron Tompkins with friends from Germany; Linda Tannenbaum & Jonas Blomberg; Linda Tannenbaum & Daniel Peterson

We had very productive scientific meetings at BRMEC. On Friday June 1st (IIMEC13) Dr. Davis presented “Revolutionizing biomedical research through technology development”. In his talk Dr. Davis shared new very exciting information from the Severely ill Patient Study (SIPS) that will hopefully help the entire ME / CFS field and all patients. ”If this is the case we should be able to push the patients out of this state by a specific metabolic intervention. We are very hopeful that this could be a one time treatment, take only a few days, and be relatively inexpensive.”

Invest in ME again provide a wonderful platform for the latest and most promising biomedical research into ME / CFS. Carol Head (Solve ME / CFS Initiative) gave a great talk at the preconference dinner meeting about the status of ME / CFS in the USA.

L to R: Linda Tannenbaum, Carol Head, Richard Simpson;
Beth Unger, Maureen Hanson & Dan Peterson; Wenzhong Xiao, Ron Tompkins & Ron Davis

I truly feel blessed, not only being able to be here with our inspirational delegation and so many other brilliant scientists from around the world, but especially to connect and share time with patients and caregivers. Thank you all for your wonderful comments and feelings; many approached me that we are really giving them hope for the first time. This love of the ME / CFS community inspires us every day to find answers soon.

As Margaret Mead says: “A small group of thoughtful people could change the world. Indeed, it’s the only thing that ever has.” And as we collaborate and share hope, anything is possible!

With hope for all,


Linda Tannenbaum
CEO/President

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