On March 2-3, 2018, the Bateman Horne Center hosted an exciting summit of leading U.S. ME/CFS clinicians who came together to share their pearls of wisdom on diagnosis and treatment in order to improve ME/CFS clinical care and refine more precise research targets. The meeting was remarkable for the ambitious nature of the agenda, the enthusiastic participants eager to share, learn and often times be challenged by their peers. Each participant engaged in extensive pre-work exercises beginning 10 weeks prior to their arrival. This data was then analyzed and presented as the starting place for lively review and prioritization among this group of expert clinicians.
The goals of this meeting 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. The meeting conclusions will be summarized in a report for the research community.
- Establish a foundation of expert clinical knowledge, propose mechanisms to support ongoing clinical collaboration, and increase the pool of experienced ME/CFS clinicians. The plan is to hold a summit at least annually and use other mechanisms to advance shared goals between summits.
The ME/CFS clinicians in attendance included the biggest names in the field:
• Dr. Lucinda Bateman – Internal Medicine, Salt Lake City, Utah
• Dr. Alison Bested – Hematological Pathologist, Miami, Florida
• Dr. John Chia – Infectious Disease, Torrance, California
• Dr. Theresa Dowell – Family Nurse Practitioner, Flagstaff, Arizona
• Dr. Chuck Lapp – Internal Medicine, Raleigh, North Carolina
• Dr. Susan Levine – Infectious Disease, New York, New York
• Dr. David Kaufman – Internal Medicine, Mountain View, California
• Dr. Nancy Klimas – Immunologist, Miami, Florida
• Dr. Ben Natelson – Neurologist, New York
• Dr. Dan Peterson – Internal Medicine, Incline Village, Nevada
• Dr. 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. Komaroff. Dr. Dere brought valuable insights from his work in other diseases and from 25 years in the biopharmaceutical industry. Dr. Suzanne Vernon and Dr. Ron Davis also attended and brought a researcher’s perspective to the discussion. Others in attendance included Linda Tannebaum of the Open Medicine Foundation, two medical writers Dr. Lily Chu and Dr. Maria Herman, medical journalist Miriam E. Tucker, Dr. Gary and Rina Solomon, and staff from Bateman Horne Center. The event was organized by Bateman Horne Center and Mary Dimmock, tireless ME/CFS advocate.
Although many of these clinicians know each other, this meeting was the first of it’s kind with an incredibly ambitious agenda led by Dr. Bateman. 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.
A Consensus-Driven Clinician Coalition Takes Shape
The primary outcomes are two-fold. First, an evidence-based paper on diagnostic and treatment methods to be published in a peer-reviewed medical journal and secondly, to produce a paper for the research community focused on clinician guided treatment trials, identification of possible illness subsets, and observations of illness presentation. There are many other goals to accomplish through this effort. Most notably, encouraging clinicians and researchers into the field and the most efficient and effective ways to mainstream the illness within the medical community.
Consensus was reached among this group of expert ME/CFS clinicians to collaborate on the denouncement of the PACE trial and the importance of language. A dialogue ensued resulting in the consensus to always use ME/CFS and not only “Chronic Fatigue Syndrome” alone which has allowed for disbelief, misconceptions and stigmas to persist.
Dr. Natelson suggested the term, gentle physical conditioning, to be considered by the group as opposed to exercise. Exercise can be misinterpreted by clinicians new to the field and mislead them in their treatment of patients.
The ME/CFS expert clinician coalition has many plans as it begins to take shape and the expectation to be ever evolving. Dr. Chuck Lapp and Dr. Richard Podell have both recently retired and it is a priority to retain and share their knowledge along with encouraging new clinicians into the field.
Immediate next steps include creating a mechanism for expeditious communication among this group like a ListServ, going more in depth on sub topics via teleconference, and moving forward on publications and updating open source sites available to the public. Aggregating the knowledge of these clinicians on clinical sub topics related to ME/CFS and providing patients, caregivers, advocates, clinicians and the researchers the most up to date information is a critical outcome for BHC and this coalition.
“Much Can Be Done to Ease ‘Chronic Fatigue Syndrome’ Symptoms” published by Miriam E. Tucker for Medscape 3/12/18
Dr. BHC’s March Education Meeting, ME/CFS Clinician Summit Summary by Dr. Bateman 3/7/18