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

May 25: Isle of Man (Day 2)

Linda’s second day started with two meetings that focused on proper medical care for patients and for better school accommodations for sick children, two of the main pillars of OMF. Linda and Team OMF Isle of man met first with the team that currently treats adult ME / CFS patients, Jo Roberts OT and Jugnu Mahayana, Medical Director. The meeting went very well and both understand the disease and are very caring. This meeting was followed by another one with the Children’s team – as part of the Mental Health Division – that sees children up to 16 years of age with ME / CFS. Linda and the IOM team met with Director Kate Kirk and Dr. Proudlove and Dr. Kerry, a pediatric physiologist, and talked about what is needed. The OMF Team also discussed the possibility to refer patients to the ME clinic in Liverpool, which understands additional biological aspects of the disease. All participants spent much of their time on this discussion and listened carefully to all of our concerns for patients. Team OMF truly hopes that changes will be made and that the availability of teachers to provide accommodations for school children will improve.

After those two meetings, Linda had the pleasure of having lunch with two young patients and others before visiting Craig Morris and his wonderful parents in Port St. Mary. Craig is severely ill and homebound. Despite that, he found the strength to connect with the ME support group and together invited Linda to visit the Isle of Man and talk to their government. Linda and Craig spent some enjoyable time together talking about the success of the government meetings and in appreciation that the Minister agreed to put money towards improving ME / CFS services for patients. Linda was especially touched by Craig’s huge smile despite his disability and suffering.

Celia (Marshall, chair of the Isle of Man ME support group) and Linda were then interviewed on Manx Radio at the Isle of Man radio station. Once the short 4-minute clip of the interview is ready, OMF will make sure it is shared with all of our supporters. Linda then had an interesting private scientific meeting before going to Celia’s house. Celia was so kind as to organize a lovely dinner for the ME support group members at her home, where Linda was staying, and about 10 people were able to join. Linda went to bed late, enjoying again a full day of successful and inspiring meetings. The morning after she left on her trip to Dublin.

 

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