Open Medicine Foundation

The Open Medicine Foundation (OMF) is an American non-profit 501(c)(3) organization established in 2012 for the purpose of funding and initiating groundbreaking research into complex chronic diseases. It supports chronic complex disease research with a focus on chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME), fibromyalgia (FMS), and Chronic Lyme Disease.

The OMF's current project is the End ME/CFS Project.

Many of those involved in OMF, including Founder/CEO/President Linda Tannenbaum, either have a neuro-immune disease or have a family member who has a neuro-immune disease.

OMF's strategy is to include highly recognized and accomplished scientists with expertise in body systems linked to chronic complex diseases. The organization also has an extensive patient network as developed through email newsletter subscriptions.

Stuart Murdoch is Ambassador promoting the OMF's work "through videos and messaging on their social media and websites, personal appearances, and face-to-face interactions with their communities and fans." Amy Carlson is an OMF Ambassador also raising awareness and fundraising. As is celebrated international author Karin Alvtegen and opera star Jacqueline Ko.

ME/CFS Scientific Advisory Board
The advisory board is made up of world-renowned researchers:


 * Dr. Ronald Davis (Scientific Advisory Board Director, and father of Whitney Dafoe)
 * Paul Berg (cellular metabolism, Nobel laureate)
 * Mario Capecchi (genetics, Nobel laureate)
 * Mark Davis (immunology)
 * Craig Heller (exercise physiology)
 * Robert Naviaux (virology & cell biology, mitochondrial specialist)
 * Baldomero Olivera (neurobiology & pain)
 * Ronald Tompkins (trauma & metabolism)
 * Wenzhong Xiao (computational genomics)
 * David Bell (ME/CFS clinician. See Lyndonville outbreak)
 * Maureen Hanson (cell and molecular biology)
 * Øystein Fluge (oncology)
 * Olav Mella (oncology)
 * Jonas Bergquist
 * Jennifer Frankovich
 * Daniel Peterson
 * Mike Snyder

Board
The OMF board comprises:


 * Linda Tannenbaum (Founder/CEO/President)
 * Kimberley Hicks (Treasurer)
 * Patti Linsley (Secretary)
 * R.P. Channing, MD, Emeritus
 * Kathryn Bach
 * Carol E. Jensen
 * Deborah Rose, MD
 * Joseph Morin
 * Hany Zayed, PhD

End ME/CFS Project
The End ME/CFS Project is the Open Medicine Foundation's main project, and has been running over a number of years. It aims to:
 * find a diagnostic tool for ME/CFS
 * deliver treatments for ME/CFS
 * ultimately find a cure for ME/CFS

The project has run a number of different studies, including the ME/CFS Severely Ill, Big Data Study.

ME/CFS Severely Ill, Big Data Study
The ME/CFS Severely Ill, Big Data Study was announced in May, 2015. The most severely ill ME/CFS patients were being studied to find a diagnostic biomarker. The project is now complete.

Mestinon trial
A clinical trial of mestinon was announced in May 2020. Mestinon is an existing drug which may help with post-exertional malaise (PEM). This will be a pilot treatment trial.

Kynurenine trial
A pilot treatment trial of kynurenine was announced in May 2020. Kynurenine is an amino acid naturally present in the body. This trial is linked to the metabolic trap hypothesis devised by Robert Phair after analysis of the data from the ME/CFS Severely Ill, Big Data Study.CFS

COVID-19 Study
This project was announced in May 2020, during the coronavirus pandemic and aims "to track patients with COVID-19 that have been discharged from the ICU, with the expectation that some will develop ME/CFS."

This will involve collecting biological samples from patients, "continuous health tracking" using wearables, and "symptom data collection" over the course of two years.

Other projects
In 2016, "Mitochondria Man Gets Money UK Goes Mega Chronic Fatigue Syndrome Research Moves Forward"

Stanford University, United States
Led by Ron Davis, the Stanford University OMF collaborative center aims to produce a blood-based diagnostic test for ME/CFS.

Harvard, United States
Established in 2018, the OMF's Harvard collaborative center involves Harvard University, and the Harvard-affiliated Brigham Women's Hospital (BWH), Massachusetts General Hospital (MGH) and Beth Israel Deaconess Medical Center (BIDMC). It is led by Ronald Tompkins and Wenzhong Xiao.

Uppsala University, Sweden
The OMF's Uppsala University collaborative center is led by Jonas Bergquist.

Montréal, Canada
The CHU Sainte-Justine/Université de Montréal collaborative center was established in 2020, and is led by Alain Moreau.

Notable research

 * 2016, Metabolic features of chronic fatigue syndrome

Funding
OMF have fund-raised primarily from ME sufferers and community for the research. The National Institutes of Health have rejected almost all funding applications, except for partial refunding of the technology for creating a diagnostic biomarker in ME/CFS.

In January 2018 Pineapple fund, a philanthropic project by an early bitcoin investor, donated $1 million to OMF. The anonymous donor was so touched by the outpouring of appreciation from the worldwide ME community that they increased the donation to $5 million.

In May 2018, OMF received a new $1 million anonymous pledge to escalate Dr. Ronald Davis’s systems biology approach with Robert Phair.

Advocacy
The OMF and the Davis-Dafoe Family held two screenings of Forgotten Plague. Dr. Davis spoke about ME/CFS and research after the screening.

Dr. Davis, along with colleagues, have written and signed open letters in reference to research funds and the PACE trial, and taken part in many Millions Missing protests.

Talks and interviews
Community Symposium Ronald Davis
 * 3rd Annual Community Symposium on the Molecular Basis of ME/CFS (Sept 2019)
 * Inaugural Harvard Community Symposium:Finding Clarity (June 2019)
 * 2nd Annual Community Symposium on the Molecular Basis of ME/CFS (Sept 2018)
 * 1st Annual Community Symposium on the Molecular Basis of ME/CFS (Aug 2017)

2019 2018 2017
 * Bedside Chat with Ben (Dec)
 * Lecture at Albert Einstein College of Medicine (Nov 25)
 * ME/CFS Alert Episode #109 (Sept)
 * Presentation at IiMEC13 (May)
 * Research Update (May)
 * Q&A on ME/CFS Research with Dr. Ron Davis (Mar 7)
 * An Update on ME/CFS Research with Dr. Ronald W. Davis (Feb 21)
 * Scientist Ron Davis Tells How We Are "Fast-Tracking" ME/CFS Research (Feb 3)

2016
 * Getting Answers to ME/CFS Faster through Collaboration and Openness (Dec 13)
 * Short Story of a Family's Struggle with ME/CFS (May 21)

Ronald Tompkins

2019 Linda Tannenbaum
 * ME/CFS Alert Episode #110 (Sept)
 * Patient Conversations: Interviews Dr. Alan Gurwitt (June)
 * Patient Conversations: Interviews Rivka Solomon (April)

2019 2018 2017 2016 Christopher Armstrong
 * ME/CFS Alert Episode #112 (Sept)
 * Guest with Llewellyn King on The Joe Madison Show
 * What is ME/CFS
 * The Story Behind OMF (Nov)
 * What is ME/CFS
 * Worldwide Tour Presentation (NY) (June)
 * Episode 79 - Linda Tannenbaum (May 8)

2019
 * Uninivisible Podcast Episode #46 (Oct)
 * ME/CFS Alert Episode #111 (Sept)

Online presence

 * Website
 * Facebook
 * Twitter
 * YouTube

Learn more

 * What is ME/CFS?