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 17-20

Traveling is an adventure. Yesterday after a flight and two trains, I arrived in Gothenburg 11 1/2 hours after I left my hotel in Bergen, Norway. I certainly saw some beautiful sights along the way (picture: view from the train)!

Erik and Lena Nilsson kindly made all the arrangements for my visit. They picked me up and took me to the Gottfries Clinic, which for many years was the only clinic in Sweden that saw ME / CFS patients. My last visit to the Clinic was Oct 2013. During my visit, I met with Drs. Carl-Gerhard Gottfries and Olaf Zachrisson (pictured below).

We have learned, unfortunately, that the government in Gothenburg is no longer paying for patients to be treated there. The ME / CFS community is working to get that coverage reinstated but is having a very trying time of it. The Clinic needs backing by the government to be able to treat patients so that the patients do not have to pay and travel many hours to Stockholm to see an ME / CFS specialist. This is a real problem in this area of Sweden. It is not the same as in Stockholm, which has had a clinic for the last two years that is paid by the government. If anyone can help them with this situation, please contact the Swedish patient support organization RME.

Today, RME West graciously hosted my talk in Boras. Camilla and Klas Gillberg made all the excellent arrangements. About 30 people, many of them parents, attended the event. I was thrilled to be here, and it was very nice to see some familiar faces. I had a lot more to say than I did 3 1/2 years ago. It really highlighted for me that a lot of research has happened in the last few years. (Pictured below: RME organizers Camilla & Klas Gillberg and Erik Nilsson).

After my talk, there was a presentation by the company No Isolation. No Isolation has created a robot that allows children to take part in activities in their school classrooms and other places from their home. It is a promising tool that can help patients with ME / CFS and other diseases to stay connected with their communities and preserve a sense of belonging, even if it is difficult for them to leave the house.

Tomorrow, I will take a train to Stockholm to meet with more new and old friends.

 

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