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

October Newsletter

Ron Tompkins and Jonas Bergquist Attend RME Sweden Conferences

OMF Scientific Advisory Board members Ronald G. Tompkins, MD, ScD, and Jonas Bergquist, MD, PhD, are participating at the annual RME sponsored Roundtable meetings at the Lejondal Castle outside Stockholm on October 15-16. These meetings bring together leading researchers and clinicians from across Europe focused on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS). The aim of the meeting is to provide opportunity for discussion and information about on-going research and clinical development. Dr. Bergquist attends this event annualy. Dr. Tompkins is joining for the first time and will be presenting on “Multi-omic Research at the ME / CFS Centre, Harvard”.

Drs. Tompkins and Bergquist also will both be attending the 12th Annual RME Sweden Conference following the Roundtable meetings. This year’s conference, ME / CFS – A Multiple Challenge for Researchers and Caregivers, is being held in Stockholm, Sweden on October 16 and in Umea, Sweden on October 17.

Dr. Bergquist will be presenting at the public meetings. His talk is titled: “What do we know about ME / CFS? What do we think we know? What´s uncertain?”

Thank you to RME Sweden for their continued partnership in raising funds for research and for helping increase education and awareness.

 


Linda Tannenbaum Interviewed on Sirius Radio

Recognizing that the African American community as well as many minorities are underserved and under diagnosed in the U.S., with the help of advocate Llewellyn King, Linda Tannenbaum brought a spotlight on this issue as a guest on the award-winning SiriusXM Radio Urban View, “The Joe Madison Show.” This show airs weekdays from 6 AM to 10:00 AM ET and has a tremendous following. Joe Madison is described as “a tireless advocate for African Americans and other minorities.”

During the interview Linda was able to educate the listeners about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) and encouraged them to join OMF in our quest to find a biomarker, treatments, and a cure. Linda clearly delivered the message that we are a unified community and share a common mission to help all patients return to living full lives.

Click here to listen to this broadcast.

Click here to view the video from the studio.

[embedyt] https://www.youtube.com/watch?v=C20MwiYfSGg[/embedyt]

Dr. Ron Tompkins on PBS White House Chronicle

Llewellyn King, host of PBS’s “White House Chronicle,” recently interviewed Dr. Ronald Tompkins for his broadcast in an episode titled, Medicine and Engineering. During the half-hour interview, Dr. Tompkins spoke broadly about medical engineering, and briefly about ME / CFS.

Llewellyn said of the interview, “because he understands the importance of basic research which may lead to a breakthrough, Dr. Tompkins is one of the most important researchers seeking answers.”

To view the episode, click here.

 

[embedyt] https://www.youtube.com/watch?v=C20MwiYfSGg[/embedyt]

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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 five 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