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

RME Sweden Shares Blog Post on Worldwide Tour Visit

(Blog Post translated by Google Translate and shared with permission from the RME website.)

Member meeting in Borås, part 1-Visit by Linda Tannenbaum from Open Medicine Foundation

Camilla Gillberg, RME Sweden’s Secretary, reports from Member meeting held in Boras on Sunday, and also tells us when she met Linda Tannenbaum for the first time:

For 3.5 years ago, in October 2013, we arranged a membership meeting in Boras for RME West’s behalf. We would be visited by a woman from the United States who were starting to try to get more research into ME / CFS. At the meeting, we heard some very interesting information. Why ME-research does not have more money, how far the research had come and what this woman wanted to do.

The woman was Linda Tannenbaum and at our first meeting, she had just started Open Medicine Foundation (OMF).

Linda got in touch with ME / CFS, when her teenage daughter very quickly became ill.

“Eight o’clock when I let go of her at school, she was healthy, at a quarter past eight, she was not anymore, “explained Linda.

When Linda’s daughter was diagnosed, she began to investigate how far the research brought about ME / CFS and was dismayed by the result.

By the meeting of 2013, Linda found some ME-researcher, but it made her just frustrated.

“They did not talk with each other, so I invited a group of talented ME-doctors and a team of scientists to a meeting, put them around a table, took out a post-it notes and told them to start talking with each other.”

Last Sunday, I had the great privilege to participate once again at a members ‘ meeting in Borås, where Linda Tannenbaum told of OMF’s research into ME / CFS. Linda is as exuberant, enthusiastic, dedicated and engaging now that she was the first time I met her. During the meeting, she told us about the latest news in research and OMF.

A condition OMF has when entering and funding research, is that all raw data has to be shared with other researchers. In this way, you avoid other scientists reinventing the wheel again, making the results come faster. So far, OMF has collected $6.2 million for research, and a small portion of the money comes from Sweden. During the past year, OMF funded some of the Swedish research at Uppsala University.

In the research, OMF has begun to look at the most seriously ill, 20 seriously ill have left over 1100 tests. These analyses are still ongoing but it is very clear that it is a physical disease because, among other things, they found both too high and too low values on the metabolites of ME sufferers.

Linda showed us an electronic chip that has begun to be used to test the cells on. The cells, which is placed on the chip, are startled by using salt and via a test equipment, one can clearly see the difference in the results when you compare the values of the cells that come from ME-sick people with those from healthy controls.

This is a small selection of what Linda told us. The large proceeds of the meeting, however, was this: Solution approaches, there is hope! RME follows the works OMF performs with great interest. I look forward to the next visit with Linda, which I hope will be a sooner than about 3.5 years!

To Read in Swedish:

Medlemsträff i Borås, del 1 – Besök av Linda Tannenbaum från Open Medicine Foundation

Camilla Gillberg, RME Sveriges sekreterare, rapporterar från medlemsmötet i Borås som hölls i söndags, och berättar även när hon träffade Linda Tannenbaum för första gången:

För 3,5 år sedan, i oktober 2013, hjälpte jag till med att ordna ett medlemsmöte i Borås för RME Västs räkning. Vi skulle få besök av en kvinna från USA som hade börjat försöka få igång mer forskning kring ME / CFS. På mötet fick vi höra mycket intressant information. Varför ME-forskningen inte har mer pengar, hur långt forskningen hade kommit samt vad den här kvinnan ville göra.
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