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

The Strength of Support Groups – Reflections from the Tour

On my travels through Europe I am reminded of the incredible work done by national organizations and local support groups on so many levels, and how important these groups are for patients and parents in those countries. Most European countries have one or several big and smaller support groups, with members ranging from a few hundred to a few thousand. Not only have those groups done a great job in organizing all the conferences I have been invited to but they are extremely important for the local ME / CFS community. Today I would like to share some of the advantages of belonging to such groups and the things that stood out to me when talking to patients and organizers in Europe.

First off, for patients it is important to feel a sense of belonging, of being part of a global community, especially since I feel that social isolation and credibility are one of the major problems for patients and their families. When members attend the meetings or are connected online, they are among people who understand their illness and the implications of it on so many levels. In addition, these groups are a great source of information and help. All of us know the feeling of not knowing whom to turn to for help and not being understood. In these support groups, patients share a lot of useful information and for those that are too sick to attend, they can join the discussion online or by phone.

Support groups give support on so many levels: clinically valid information on the disease itself; names of supportive medical practitioners in the area; validation (being believed, being heard); emotional, practical and social support. Most groups organize interesting events, invite specialists, have monthly gatherings, share information by monthly brochures and are on social media.

The sense of belonging that these groups provide can therefore be very valuable for the ME / CFS community, and we are so grateful for it. Many patients are not only socially isolated, having lost friends and been alienated from family, but many are also physically alone, with no partner or children. Belonging to a social network or community is extremely important for every human being – it helps us to thrive. So please join me in expressing OMF’s gratitude to the wonderful community organizations that provide much-needed hope and support to patients, parents, scientists, and doctors worldwide!

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