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

Newsletter October 2020

Join our Mission to End ME/CFS:

Your Digital Fundraising Toolkit is Here!

Passionate about our mission to end ME/CFS? Join us in our fight to fast-track critical research into Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) by starting your own digital fundraiser!

Open Medicine Foundation (OMF) is excited to announce that we have created your all inclusive toolkit for digital fundraising so you can help us to support groundbreaking research projects any time of the year, from anywhere in the world. All you need is an internet connection. 

View the toolkit now

The toolkit includes simple, easy-to-use guides for launching fundraisers on Facebook or CrowdChange, and downloadable templates to help spread the word on social media or email. 

Why digitally fundraise for OMF?

Millions of dollars are needed annually to support The End ME/CFS Project. 

OMF has set an aggressive goal to raise $20+ million per year from grants and donations. By digitally fundraising, you directly aid in keeping the research moving with urgency so that we may find diagnostic tools, treatments, and a cure for the millions affected by ME/CFS. 

Thank you for your support! 

Announcing the U.S. ME/CFS Clinician Coalition Website!

Formed in 2018, the U.S. ME/CFS Clinician Coalition is a group of American ME/CFS expert clinicians with the shared goal of improving clinical care for people with ME/CFS, and providing medical education on ME/CFS for healthcare providers.

View the new US ME/CFS Clinician Coalition website now

 The goal of this website is to help medical providers deliver better care to people with ME/CFS. It includes resources that may assist with diagnosis of ME/CFS and insight into clinical management, opportunities for continued medical education courses on ME/CFS, guidance on disability or school/work accommodations, and more. 

We do hope this website can serve as a valuable resource that people with ME/CFS can also share with their medical providers.

Make sure to also visit OMF’s updated Resource Center on our website, which provides links to the US ME/CFS Clinician Coalition Diagnostic Guidelines, as well as other useful information for your doctor.

IACFS/ME 2020 Virtual Scientific Conference Report Published

 The ME Association put together an excellent conference report covering The International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis’ (IACFS/ME) 2020 virtual scientific conference. 

Read the full conference summary.

The IACFS/ME conference was held on August 21 2020, with over 200 people in attendance, including researchers, clinicians, patients and caregivers. OMF was proud to be one of the sponsors of this event.

This conference focused on biomedical, public health, and behavioral aspects of ME/CFS and associated co-morbidities. A portion of the meeting was dedicated to COVID-19 and its relevance to and implication on ME/CFS research and clinical care.

OMF’s Chief Medical Officer, Dr. Ronald Tompkins, also gave a presentation on the Conversion of COVID-19 Patients to ME/CFS. (You can read a brief summary of Dr. Tompkins’ presentation in the IACFS/ME Conference Report on page two.)

Many thanks to The International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME) for hosting this important conference, and to The ME Association for making a comprehensive conference summary available to the community.

OMF Awarded Score of 100 on Charity Navigator!

OMF is proud to share that we have received a score of “100 Encompass Rating” in the Finance & Accountability category on Charity Navigator! Less than one percent of the thousands of charities rated by Charity Navigator have earned perfect scores and we are one of them!

This is an essential first step in the rigorous process to achieve a 100 point perfect score. Less than one percent of the thousands of charities rated by Charity Navigator have earned perfect scores.

Charity Navigator (CN) is one of the United States’ largest and most-utilized evaluators of charities that helps donors to give to charitable organizations with confidence. CN evaluated OMF’s financial health including measures of stability, efficiency and sustainability. CN also tracked accountability and transparency policies to ensure OMF’s good governance and integrity.

Charity Navigator’s rating system examines important areas of a charity’s performance: their Financial Health and their Accountability & Transparency; Finance & Accountability; Impact & Results; Leadership & Adaptability; Culture & Community.

OMF’s score of 100 serves as an indicator of trust, demonstrating our longstanding commitment to ensuring accountability, transparency, and measures of financial health, including stability, efficiency and sustainability.

You can view OMF’s Charity Navigator page here.

If you are able, please consider contributing to our effort to uncover research-based answers.

Help us improve the quality of life for all sufferers of ME/CFS and other chronic complex diseases, such as Post Treatment Lyme Disease Syndrome and Fibromyalgia. 

 

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.

###

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