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

Visiting our friends in Denmark

Written by Linda Tannenbaum, OMF Founder & CEO/President

After our meetings in London, I continued on my End ME / CFS Worldwide Tour 2019 with a stop in Copenhagen, Denmark on Sunday, June 2nd. It was very important for me to be in Denmark and shine an international light on the many challenges Danish patients are facing, and show them the USA, OMF and the world care, and understand their challenges.

Upon my arrival, I was welcomed by Helle Florgaard (Board Member) and her husband and Cathrine Engsig (Vice-Chair) from the Danish ME Association/ME Foreningen. At my talk, there were about 40 attendees including the chairman of The Swedish National Association for ME Patients (RME), Kerstin Heiling, who came all the way from Sweden. Most of the attendees were patients and caregivers. We had a lot of engagement and many questions. At the personal meet and greet afterward, I had the pleasure to talk to some patients; their personal stories keep touching my heart.

Left to Right: Left: Vibeke Vind (Scientific Consultant Danish ME Association), Linda Christensen (Board Member Danish ME Association) Linda Tannenbaum and Cathrine Engsig (Vice-Chair). Picture middle: Linda and Cathrine; Picture right: Vibeke, Cathrine, Linda.

It was not only important for me to give an update on what OMF is doing to accelerate open collaborative research to unravel ME / CFS, but I also wanted to raise awareness, share information and especially bring hope to Danish patients. The people were very nice and thanked us all for spreading hope.

“It was lovely to have Linda come all the way to Denmark and bring hope and research updates,” according to Cathrine Engsig. “The situation in Denmark for ME patients is not good. Although the parliament has decided that ME is a somatic disease and should be treated as one, the Danish doctors don’t agree with the politicians and are angry that this happened. They don’t have much knowledge about ME. Doctors don’t recognize the disease and only one private doctor is known to give the diagnosis in Denmark due to the heavy influence of psychiatry on the government level.”

In London, I already had the honor of meeting with Dr. Jesper Mehlsen. Dr. Mehlsen is seeing patients and doing research in Denmark and we look forward to collaborating with him. Dr. Mehlsen is a very caring doctor; he understands the disease, sees many patients and treats their symptoms.

After the meeting, we all had a nice dinner together with several members of the Danish ME Association, where we talked about the ME / CFS situation in Denmark and exchanged hope and ideas to conquer this terrible disease together. We especially want to thank our new friends from the Danish ME Association, in particular, Rebecca Hansen (Chair), Cathrine and Helle for their warm welcome and a perfectly organized event! We truly hope that with these Worldwide Tour talks – and blogs – we can offer some hope and much needed scientific information so that health authorities will better understand this terrible disease.

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.


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 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.


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.


Heather Ah San

Development and Communications Manager