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

Message from Linda: “What I learned From My European Tour of Hope”

Dear ME/CFS friends,

I just finished my European Tour of Hope and arrived back home. The last month I have been travelling through 6 European countries and had dozens of lectures and meetings with patients, parents, government officials and doctors. I have learned a lot and was humbled and acutely aware of the very important task OMF has. Also, I felt so much warmth, closeness and drive in my contacts with our European friends. These impressions I will never forget.

From my encounters and the dozens of emails we received, I was thrilled to hear how happy and appreciative people were to meet face-to-face, get firsthand research updates, see our progress, and have their questions answered. It gave them hope and a vision for the future where there was desperation before. Our message of hope, fast-tracking research for answers, treatments and a cure seemed to resonate well. We will be sharing a video of my talks shortly.

I am excited to continue our End ME/CFS Worldwide Tour of Hope in the USA this fall. We will also continue our blogposts from September on with weekly useful OMF/Partner updates and information.

We are also extremely happy about the major progress that was announced after my visit to the Isle of Man and Northern Ireland regarding better services and management for ME/CFS adult patients and children. These developments highlight how powerful advocacy can be.

And speaking of powerful, it was truly inspiring to learn about the great work of national ME/CFS/FM organizations and local support groups in Europe. They are not only incredibly valuable in the sense of belonging to a community and the support the participants receive, but they are also an excellent way of sharing useful information about the disease. I encourage all patients and caregivers to sign up at their local groups in Europe and elsewhere. We don’t have many of these local support groups in the USA yet, but I am hopeful that will change.

I would like to encourage all our Team OMF supporters to share our information on your social media accounts and to send us any useful information you would like us to share as well. Our International Liaison Sara (sara@omf.ngo) is looking forward to collaborating with you. From now on, we will have a French version of our newsletters and other languages will follow soon. Sign up today!.

Next on the horizon is the meeting we are planning with Dr. Ron Davis’ team at Stanford University in August. First, there will be a two-day scientific Collaborative Team Meeting with over 30 experts that we are bringing together from all over the world! On August 12, we would like to invite you to our Community Symposium on Stanford campus, which will be open to everyone who wants to meet with our scientists in person and be updated on the latest research, progress made, and future plans! We will live-stream and record this event.

On July 17, Dr. Ron Davis will celebrate his birthday. We encourage the community to donate in his honor. All donations for Dr. Davis’ birthday will support the Collaborative Team Meeting and Community Symposium.

We promise to keep sharing exciting news and hope around the world. We will do our very best to lead the way to end ME/CFS.  I hope Team OMF will continue to grow to help us realize our shared dream. Together we are so much stronger.

Finally, my husband Don and I, together with our OMF colleagues, want to express our gratitude to the European organizers for their incredible work and warm welcome, and to all of our European friends for the supportive emails. Thank you from the bottom of my heart. I know what my task is and I know we are working for YOU. I pledge I will continue this fight until a cure is found.

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