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

Reunited With My Swedish Friends (OMF Sweden): June 19 & 20

On Monday June 19th, I arrived in Stockholm for the second part of my Swedish visit. I was welcomed by our friends at RME, Kerstin Heiling, Hendrik Fransson and Jenny Lundgren. They organized and hosted a talk with about 30 people, including many parents.

At the event, I met Susanne Froroth, also from RME. I was touched that she presented me with a pair of hand-made socks. She makes these for bed-ridden patients who commonly experience cold feet. What a sweet gesture. After the event she shared with me, “I found your speech extremely interesting and it really brought hope to us all. You are doing such a great job!!!” The feeling was very mutual. The RME group is doing fantastic things to support patients including Susanne’s dedication and these great socks.

I also had the great pleasure to finally meet in person Cecilia Ekhem, our Motivational Monday master poet and photographer. Cecilia inspires us every Monday with her fantastic poetry and pictures. In addition, Cecilia has personally raised and donated over $5,000 to OMF by writing and selling her inspiring poetry. From our entire OMF family: Thank you Cecilia!

The next day, Jenny Lundgren of RME and I met with Dr. Anna Lindquist and Emilie Karlsson at the ME / CFS Clinic Stora Skondal. I had the pleasure to tour and learn about how patients are evaluated and helped at the Stockholm clinic. With no evidence-based treatments available, the goals are to help patients handle their illness, reduce symptoms and prevent crashes. The clinic physicians do understand that this is truly a biological disease, but they express the need for published treatment trials for ME / CFS-specific treatments to patients.

Stockholm was my last talk in Europe, and it’s time to go home. I have learned a lot, met wonderful people, and received a lot of support. Many patients have told us that this tour has given them a lot of hope. I could not have asked for anything better than that! In the coming days, I will update you all with some reflections on my End ME / CFS Worldwide – European Tour of Hope.

This has been a truly inspiring experience.

With hope for all,

 

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