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ME/CFS and related chronic complex diseases

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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