Research & Care

For providers & researchers

Patients living with ME and their caregivers have been denied equal or adequate investment in research or access to care. Despite this, there are many promising areas of research emerging as well as opportunities for continuing medical education. Learn how to get more involved – sign up for our email or browse the materials below to learn more about Myalgic Encephalomyelitis and Chronic Fatigue Syndrome.

For healthcare providers – sign up to receive occasional emails regarding research news, continuing medical education opportunities, conferences and opportunities to support the movement as a physician, nurse or other healthcare provider ally.

For researchers – sign up to receive occasional emails regarding research news, conferences, funding announcements and other opportunities to support the movement as a scientist or researcher.

Diagnosis & clinical care

Diagnosis, clinical care and research have been hampered for decades by the use of overly-broad criteria that can describe patients with a wide range of conditions and by the construction of "Chronic Fatigue Syndrome" as a diagnosis of exclusion. In 2015, the US Institute of Medicine created a new diagnostic criteria to affirmatively diagnose the condition. However, some patient advocates and researchers are concerned that this criteria may still be too broad, particularly if used to select human subjects for research. Frequently used criteria include the Canadian Consensus Criteria and the International Consensus Criteria. The below reports are worth reading for any physician interested in learning more about the disease and diagnosing patients.

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness (Institute of Medicine)
Primer for Clinical Practitioners (International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis)
International Consensus Criteria (Journal of Internal Medicine)
Canadian Consensus Criteria
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer

Organizations and conferences
International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME)

Research

While research has lagged behind many other fields due to do low levels of investment, the field is growing with the recent entry of new labs and growth in private and public support. Learn more about the current state of the field, attend a conference, or connect with an existing research group.

#MEAction ME/CFS Research Summary – a short overview with an emphasis on recent studies
Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness – report contains an extensive literature review
MEpedia – a very early stage Wiki project to summarize current research. All contributions welcome!

United States

Organizations & Conferences

The Open Medicine Foundation
The Solve ME/CFS Initiative
International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) – biannual conference in the United States

Research Groups

The Chronic Fatigue Syndrome Research Center (CFSRC) at Stanford University
The ME/CFS Initiative at Stanford University
The Naviaux Lab at the University of San Diego
The Bateman Horne Center, Utah
The Hanson Lab at Cornell University

United Kingdom