U.S. ME/CFS Clinician Coalition

The U.S. ME/CFS Clinician Coalition is a professional coalition of American clinicians with expertise in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). It was formed in 2018 by a group of ME/CFS expert clinicians who have collectively spent hundreds of years treating many thousands of ME/CFS patients. Founding members have served on the expert panel that authored the National Academy of Medicine's 2015 report on ME/CFS, have authored primers on clinical management, have contributed to the CDC's medical education initiatives, and have served on the Health and Human Services' CFS Advisory Committee before it was sunsetted in 2018. Many founding members have been and continue to be actively involved in ME/CFS research. The Coalition's stated goals are to improve clinical care for patients with ME/CFS by promoting and advancing best clinical practices and by providing medical education and evidence-based recommendations; to expand the pool of medical providers with strong expertise in ME/CFS; and to provide clinical insights to scientists to accelerate and promote advances in research. Since its first meeting in Salt Lake City in 2018, the Coalition has met annually. In 2020, the group significantly expanded and now includes additional ME/CFS expert clinicians and also clinicians knowledgeable in treating key comorbidities seen in ME/CFS. The Coalition maintains a public website at mecfscliniciancoalition.org, where it provides information about ME/CFS, its members, and clinical guidance. Its members include Dr. Lucinda Bateman (Internal Medicine, UT), Dr. Alison Bested (Hematological Pathology, FL), Dr. Hector Bonilla (Internal Medicine, Infectious Disease, CA), Dr. Bela Chheda (Internal Medicine, Infectious Disease, CA), Dr. Jennifer Curtin (Internal Medicine, CA), Dr. Tania Dempsey (Internal Medicine, NY), Dr. Theresa Dowell (Family Nurse Practitioner, AZ), Dr. Donna Felsenstein (Infectious Disease, MA), Dr. Stephanie Grach (Internal Medicine, MN), Dr. David Kaufman (Internal Medicine, CA), Dr. Nancy Klimas (Immunology, FL), and others. Since 2020, the Coalition has also addressed Long COVID, noting that people with Long COVID often have symptoms overlapping with ME/CFS. The Coalition recommends that clinicians consider ME/CFS in the differential diagnosis of Long COVID, particularly when post-exertional malaise (PEM) is present, and states that early diagnosis and management of PEM and ME/CFS in these patients may be important in their disease trajectory. The Coalition has published a letter on this topic. The Coalition describes ME/CFS as a chronic, complex, debilitating, multi-system illness affecting more than one million Americans and millions worldwide. It affects persons of both sexes and all ages, ethnicities, nationalities, genders, and socioeconomic backgrounds, and is more common in women than men and in adults than children. The majority of people with ME/CFS report an infection or flu-like symptoms upon onset, but other sudden precipitating events have also been reported, and onset may be gradual. The exact cause has not been definitively established, but research supports involvement of the central, peripheral, and autonomic nervous systems, aberrant immune activation and dysfunction, and abnormal and impaired cellular metabolism. The hallmark and defining feature is post-exertional malaise (PEM), in which baseline symptoms are exacerbated by physical or cognitive exertion, often for a prolonged period after the exertion has been completed. An estimated 1 to 2.5 million Americans have ME/CFS and as many as 75% are unable to work or attend school. The estimated annual cost to the American economy is $18–24 billion in direct medical costs and lost productivity. Yet ME/CFS remains highly misunderstood and all too often stigmatized by the medical community, leaving those suffering from this illness frequently feeling abandoned or ignored by traditional medicine.

The U.S. ME/CFS Clinician Coalition was formed in 2018 by a group of American ME/CFS expert clinicians who have collectively spent hundreds of years treating many thousands of ME/CFS patients. Founding members have served on the expert panel that authored the National Academy of Medicine's 2015 report on ME/CFS, have authored primers on clinical management, have contributed to the CDC's medical education initiatives, and have served on the Health and Human Services' CFS Advisory Committee before it was sunsetted in 2018. Many founding members have been and continue to be actively involved in ME/CFS research. The Coalition held its first meeting in Salt Lake City in 2018 and has met annually since. In 2020, the group significantly expanded and now includes additional ME/CFS expert clinicians and also clinicians knowledgeable in treating key comorbidities seen in ME/CFS. The Coalition maintains a public website at mecfscliniciancoalition.org, where it provides information about ME/CFS, its members, and clinical guidance. Since 2020, the Coalition has also addressed Long COVID, noting that people with Long COVID often have symptoms overlapping with ME/CFS. The Coalition recommends that clinicians consider ME/CFS in the differential diagnosis of Long COVID, particularly when post-exertional malaise (PEM) is present, and states that early diagnosis and management of PEM and ME/CFS in these patients may be important in their disease trajectory. The Coalition has published a letter on this topic. The Coalition's goals are to improve clinical care for patients with ME/CFS by promoting and advancing best clinical practices and by providing medical education and evidence-based recommendations; to expand the pool of medical providers with strong expertise in ME/CFS; and to provide clinical insights to scientists to accelerate and promote advances in research.

• 2020

  The group significantly expands to include additional ME/CFS expert clinicians and clinicians knowledgeable in treating key comorbidities.

• 2020

  The Coalition begins addressing Long COVID and its overlap with ME/CFS.

• 2018

  The U.S. ME/CFS Clinician Coalition is formed by a group of American ME/CFS expert clinicians.

• 2018

  The Coalition holds its first meeting in Salt Lake City.

A professional coalition of expert clinicians providing evidence-based recommendations and medical education to improve ME/CFS care and expand the pool of knowledgeable providers.

• Clinical guidance and medical education on ME/CFS

  Evidence-based recommendations and educational materials for clinicians.

• ME/CFS Clinician Coalition Letter on Long COVID

  A letter recommending consideration of ME/CFS in the differential diagnosis of Long COVID, particularly when PEM is present.

1. 1U.S. ME/CFS Clinician Coalition - USMECFSCCmecfscliniciancoalition.org
2. 2About Us - U.S. ME/CFS Clinician Coalitionmecfscliniciancoalition.org
3. 3About MECFS - U.S. ME/CFS Clinician Coalitionmecfscliniciancoalition.org
4. 4U.S. ME/CFS Clinician Coalitionwikidata.org