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

OMF Sharing Hope in Dallas, Texas

Dear Friends,

After my stops in London, Italy and the Netherlands this summer, and our inspiring Science Days and Symposium at Stanford a few weeks ago, I continued OMF’s End ME / CFS Worldwide Tour of Hope in the USA this weekend. Our first stop was the Texas Scottish Rites Hospital for Children in Dallas this Sunday. I gave a detailed update on our ME / CFS research and all we have been doing the last months to accelerate research. As always it was also very important for me to bring hope and to explain to patients, parents, and caregivers what we and others are doing to increase awareness, education, and support. The presentation included Q & A to elaborate on some of the details and answer specific questions. My ultimate goal was to let everyone know, that they are not alone in their battle and that there is real hope.

This event has been successfully organized by Karena, a patient who has been working as a volunteer with OMF for a long time. Despite her illness, Karena was able to do a great job organizing this event and offered some real hope to many in her area.

I am so encouraged by all of the work that OMF is doing, and I believe they will continue to do great things. I am also inspired by the patient/caregiver community and all that they have accomplished in their advocacy endeavors. I hope that this event in Dallas will be one of many to come in Texas so that eventually we can have more healthcare practitioners with a great knowledge in treating this nefarious disease. And of course, I am always hopeful for an FDA approved treatment and one day a cure!”

Karena also wanted to share a very special message to everyone reading this blog:

“To all the patients, don’t give up, so many are fighting for us, and there will be a light at the end of this very dark tunnel.”

Karena once again illustrated how one person can make a difference, or as Margaret Mead said: “Never believe that a few caring people can’t change the world. For, indeed, that’s all who ever have.”

Karena and so many others like her, inspire me and our entire team to continue what we are doing to find answers. Thank you to Karena for this warmhearted event. I am looking forward to continuing our End ME / CFS Worldwide tour in 2018 and 2019 in the USA, Canada and Europe.

Warmly, with hope for all,

Linda Tannenbaum

 

 

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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