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

May 26: Meeting with Tom Kindlon in Ireland

On Friday May 26th Linda arrived in Dublin (Republic of Ireland) and was picked up by someone voted “Best Taxi Driver” in Dublin. This great taxi driver took Linda to visit the brilliant and famous Tom Kindlon and his lovely, never-give-up mother, Vera. Linda was very honored to being able to visit Tom on this European Tour.

Linda said, “for over twenty years, Tom has been home-bound with this horrific disease ME / CFS but at the same time has been the lifeline for many patients, with non-stop information flowing to keep us all up-to-date on the latest ME / CFS news. Vera has kept the Irish ME / CFS Association alive and well and has been incredible with her support. We all had a very nice visit.”

Tom and Vera gave Linda a warm welcome. “It was lovely to meet Linda. It was very kind of her to call out as I am housebound and won’t able to go to her talk on Sunday May 28th here in Dublin. I have been excited for a good while now by Open Medicine Foundation’s work and enthusiasm,” explains Tom. Tom was honored to receive a certificate of merit from OMF for his work on behalf of the OMF patient community.

Many of the ME / CFS community know Tom Kindlon. Tom is a one-of-a-kind gentleman and scholar, with lots of heart. He serves as the Assistant Chairperson of the Irish ME / CFS Association. Tom studied Mathematical Sciences at Trinity College Dublin, giving him the background to analyze and publish papers on the reporting of harms associated with ME / CFS graded-exercise therapy. Tom’s extensive body of work is on ResearchGate and PubMed. Tom is best known for his extensive analysis, publications and correspondence with ME / CFS researchers, particularly in relation to the PACE Trial.

Tom has been housebound for over 22 years. He became ill with ME / CFS in February 1989 at the age of 16. “Before becoming ill, I lived a very active life. I participated in whatever sport was going – soccer, table tennis, life-saving, tennis, cricket and cross-country running. All that changed when I became ill with ME / CFS. I can remember how it happened. I developed an infection the day before going on a school trip. I decided to go anyway. We went on an adventure to the west coast of Ireland. We did much canoeing, hiking, abseiling and orienteering. It was cold and rainy throughout the trip, not the place to be when you’re unwell. I was ill for many days after I returned. But I was never the same after that.” And that’s “…when in time I became a “spoonie”…someone with ME / CFS or any chronic invisible illness can relate to what that means,” smiles Tom.

Linda and all of OMF’s supporters want to sincerely thank Tom for his courage, strength, passion, advocacy, humor and all that he is doing for the ME / CFS community!

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