ME/CFS Clinicians Reconvene in Salt Lake City

by | Mar 13, 2019 | Clinical Care, ME/CFS, Patient Education, Press, Uncategorized

Leading U.S. ME/CFS experts will convene for the Second Annual ME/CFS Clinician Summit on March 15-16 in Salt Lake City, Utah. This event is significant because it marks progress and forward momentum for this dedicated group as they tackle the ambitious goal of mainstreaming ME/CFS in the medical community and improving the clinical care of people with ME/CFS.

There are an estimated 1 to 2.5 million people in the US with ME/CFS; between 80-90% remain undiagnosed. With no biomarkers or ways to objectively measure critical aspects of ME/CFS, patients are often ignored by modern medicine despite the overwhelming base of evidence for this disease.

The Institute of Medicine published a landmark report in 2015 providing the tools for physicians to make the diagnosis of ME/CFS. But the diagnostic criteria have yet to be widely adopted by the medical community and doctors still lack knowledge about how to treat this devastating disease.

The ME/CFS Clinician Coalition intends to change that through these primary goals and strategic outcomes:

  • Enhance and grow a collaborative network of US providers with strong expertise in ME/CFS.
  • Summarize key diagnostic and treatment methods and the supporting peer-reviewed science and best clinical practice to inform standards of care for ME/CFS.
  • Build the ranks of informed physicians nationwide through medical provider educational materials and programs.
  • Advance the ME/CFS research agenda with data, clinical observations, and intuition-based findings from expert practice. This feedback will include recommendations for treatment trials, identification of possible illness subsets, and observations of illness presentation.

The physicians in this strategic group include:

  • Dr. Lucinda Bateman – Internal Medicine, Salt Lake City, Utah
  • Dr. Alison Bested – Hematological Pathologist, Miami, Florida
  • Dr. John Chia – Torrance, California
  • Dr. Theresa Dowell – Family Nurse Practitioner, Flagstaff, Arizona
  • Dr. Susan Levine – Infectious Disease, New York, New York
  • Dr. Anthony Komaroff – Internal Medicine, Boston, Massachusetts
  • Dr. David Kaufman – Internal Medicine, Mountain View, California
  • Dr. Nancy Klimas – Immunologist, Miami, Florida
  • Dr. Charles Lapp – Charlotte, North Carolina
  • Dr. Jose Montoya – Infectious Diseases, Stanford University California
  • Dr. Ben Natelson – Neurologist, New York
  • Dr. Morris Papernik – Internal Medicine, Hartford, Connecticut
  • Dr. Dan Peterson – Internal Medicine, Incline Village, Nevada
  • Dr. Richard Podell – Internal Medicine, Summit, New Jersey
  • Dr. Irma Rey – Environmental Medicine, Miami, Florida
  • Dr. Andy Selinger – Family Medicine, Hamden Connecticut

This collaborative effort is led by Dr. Lucinda Bateman and Mary Dimmock, parent of a son with ME/CFS. After decades without clinical guidance, Cindy and Mary proposed an opportunity for the leading physicians to collect their clinical experience and intuition about ME/CFS.

This work has expanded into a strategic effort to bridge the gap between the science and medicine and better the clinical outcomes for patients everywhere.

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