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

Major announcement from Northern Ireland following OMF visit

Dear Friends,

I have a very exciting breakthrough to share with you as a result of our tour of hope and visit to Northern Ireland Dr. Ian Clements, Chairperson of the Health and Social Care Board has confirmed that ALL 365 General Practitioner (GP) practices in Northern Ireland will receive new updated information on ME / CFS and fibromyalgia, including biomedical research, that confirms the very physical nature of these diseases. They expect this information to be distributed within a maximum of 8 weeks after further negotiations with the commissioners and Public Health Agency. This news comes from our friends and supporters from the Hope 4 ME & FM Support group and Mr. Iain DeBoys, Commissioner for ME and Fibromyalgia (a committee of Health and Social Care Board).

Please stay tuned for updates at our End ME / CFS Worldwide Tour blog or the Hope 4 ME & Fibro website.

Hope 4 ME & Fibro NI has shared the following message of hope: “Hope 4 ME & Fibro Northern Ireland, has been bringing world experts and researchers from around the world to N.I. since 2011 to educate decision makers. Effectively it has taken six years to bring us to this welcome and much needed move by the Department of Health. We again thank this year’s speakers at our ‘Seeking Solutions for ME and Fibromyalgia’ conference, Dr. Mella, Linda Tannenbaum, David Tuller, Dr. W. Weir, Dr. Christine McMaster and the others before them.”

The Hope 4 ME and Fibro groups are compiling a detailed report on the presentations at their recent ‘Seeking Solutions for ME and Fibromyalgia’ educational event, held in Stormont government headquarters, Belfast, May 30th 2017.

On behalf of OMF, I would like to congratulate the Hope 4 ME & Fibro group in Northern Ireland for their excellent work in accomplishing this! Thank you again for a wonderful invitation and welcome to join these great experts in your recent conferences.

It is so exciting to see the increased awareness being translated into better healthcare policies for ME / CFS patients and caregivers!

Warmly,

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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