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

ME / CFS Clinicians Summit: Advancing Collaboration & Improving Clinical Care

On March 2-3, 2018, the Bateman Horne Center hosted the Clinicians Summit, an exciting meeting of leading U.S. ME / CFS clinicians to share their experiences on diagnosis and treatment in order to improve ME / CFS clinical care and better target research.

The goals of this meeting were ambitious and included the following:

  • Summarize key diagnostic and treatment methods and the science that supports them. The intent is to produce a paper for publication in a peer-reviewed medical journal to inform current and future medical providers.
  • Rigorously distill the most important clinical knowledge and intuition that can guide and drive research. This could include recommendations for treatment trials, identification of possible illness subsets, and observations of illness presentation.
  • Establish a foundation of expert clinical knowledge, propose mechanisms to support ongoing clinical collaboration, and increase the pool of experienced ME / CFS clinicians.

The ME / CFS clinicians in attendance included:

  • Lucinda Bateman – Internal Medicine, Salt Lake City, Utah
  • Alison Bested – Hematological Pathologist, Miami, Florida
  • John Chia – Infectious Disease, Torrance, California
  • Theresa Dowell – Family Nurse Practitioner, Flagstaff, Arizona
  • Chuck Lapp – Internal Medicine, Raleigh, North Carolina
  • Susan Levine – Infectious Disease, New York, New York
  • David Kaufman – Internal Medicine, Mountain View, California
  • Nancy Klimas – Immunologist, Miami, Florida
  • Ben Natelson – Neurologist, New York
  • Dan Peterson – Internal Medicine, Incline Village, Nevada
  • Richard Podell – Internal Medicine, Summit, New Jersey

Dr. Jose Montoya of Stanford University, Dr. Peter Rowe of John Hopkins University, and Dr. Irma Rey of Nova Southeastern University were also invited but were unable to attend. We look forward to seeing them at the next summit.

Dr. Willard Dere of the University of Utah participated as a facilitator along with Dr. Anthony Komaroff of Harvard University. Dr. Dere brought valuable insights from his work in other diseases and from 25 years in the biopharmaceutical industry. Dr. Suzanne Vernon and OMF’s Scientific Advisory Board Director, Ronald W. Davis, PhD, also attended and brought a researcher’s perspective to the discussion. Others in attendance included Linda Tannenbaum, OMF CEO/President, Dr. Lily Chu, Dr. Maria Herman, two medical writers, a medical journalist, Gary and Rina Solomon, and staff from the Bateman Horne Center. The event was organized by the Bateman Horne Center and Mary Dimmock, ME / CFS advocate.

This was the first time that these clinicians had the opportunity to meet. They were all enthusiastic about this opportunity to share their perspectives with each other, advance ME / CFS research, and help other doctors understand how to better care for people with ME / CFS. The meeting conclusions will be summarized in a report for the research community.

Linda described the event as a “great sharing of knowledge between clinicians.” She said, “It was a very productive meeting with a shared mission to find the best way to train other clinicians about recognizing, diagnosing and treating symptoms of ME / CFS.”

The plan is to hold a summit annually and to advance the shared goals between summits.

To read more on the Clinicians Summit:

Bateman Horne Center article

Miriam Tucker’s articles on Medscape:

Medscape: Much Can Be Done to Ease ‘Chronic Fatigue Syndrome’ Symptoms

Medscape: Mast Cell Activation May Underlie ‘Chronic Fatigue Syndrome’

Medscape: Low-dose Naltrexone Explored as Option for Chronic Pain

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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