ME/CFS Resources

RESEARCH and CLINICAL Resources:

The Jackson Laboratory
Collaborative Research Center 
Researches the mechanisms of human T cell differentiation, activation and regulation in the contexts of normal immune response, diseases and aging. Dr. Unutmaz has received one of the three Center grants for the ME/CFS project.  

Cornell University
Collaborative Research Center
Maureen R. Hanson is Liberty Hyde Bailey Professor in the Department of Molecular Biology & Genetics. Dr. Hanson has received one of the three Center grants for the ME/CFS project.  

Columbia University
Collaborative Research Center
W. Ian Lipkin, MD, is internationally recognized as an authority on the use of molecular methods for pathogen discovery. Dr. Lipkin has received one of the three Center grants for the ME/CFS project.  

Bateman Horne Center
Clinical Core
The Bateman Horne Center of Excellence is leading the way in the medical advancement and treatment of and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia.

Precise.ly
Precision Health through Personal Data
A health tracking application that’s soon to be partnering with Helix to focus on tracking symptoms for ME/CFS patients.

NIH ME/CFS Page
Study Resource
Working as a team with leadership from the National Institute of Neurological Disorders and Stroke (NINDS), the Trans-NIH ME/CFS Working Group identifies shared areas of interest and challenges to advance ME/CFS research. The Working Group provides evidence-based rationales for supporting ME/CFS research and attracting investigators to study this complex illness to NIH Institutes, Centers, and Offices.

Institute For Neuro Immune Medicine
Clinical Resource
Nancy Klimas, MD, has more than 30 years of professional experience and has achieved international recognition for her research and clinical efforts in multi-symptom disorders, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Gulf War Illness (GWI), Fibromyalgia, and other Neuro Immune Disorders.

ME/CFS: A Primer for Clinical Practitioners
Primer for Clinical Practitioners
Written by the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) Our goal is to provide the information necessary to understand, diagnose, and manage the symptoms of chronic fatigue syndrome — also known as myalgic en- cephalomyelitis (ME/CFS).

ADVOCACY and PATIENT Resources:

Solve ME/CFS Initiative
Advocacy Group
SMCI envisions a world free of ME/CFS and works steadfastly to make this disease understood, diagnosable, and treatable. SMCI seeks to actively engage the entire ME/CFS community in research, works to accelerate the discovery of safe and effective treatments, and strives for an aggressive expansion of funding toward a cure.

ME Association
Advocacy Group
The ME Association aims to support people with ME/CFS through all stages of their illness.

Mass CFIDS
Advocacy Group
The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. 

MEAction
Advocacy Group
We focus our efforts in three main areas: Supporting and connecting people with ME and their caretakers, educating and advocating with and for people with ME, and organizing for long-term research, policy, and cultural change around ME.

Health Rising
Advocacy Group
Health Rising is dedicated to providing timely, accurate information to people with chronic fatigue syndrome (ME/CFS) and fibromyalgia.

Science for ME
Patient Forum
Our goal is to provide a platform to discuss all aspects of this disease, with a special focus on science, support, and advocacy.

Microbe Minded
Patient Advocate Resource
Amy Proal graduated from Georgetown University in 2005 with a degree in biology. While at Georgetown she wrote her senior thesis on the role of infectious agents in the disease Chronic Fatigue Syndrome. 

The Microbe Discovery Project
Patient-Led Support Initiative
A patient-led initiative supporting Dr. Ian Lipkin & Dr. Mady Hornig’s ME/CFS research
at the Columbia University Center for Infection and Immunity, Mailman School of Public Health, New York.

The American ME and CFS Society (AMMES)
Patient NonProfit
Seeking to channel patient perspectives to government agencies, committees and initiatives, and to unify the ME and CFS community by pursuing the common goals of expanding research, increasing knowledge about treating the disease, and educating health care professionals to help them make a timely diagnosis and alleviate the suffering of patients.

Occupy M.E.
Patient Advocate Resource
Jennie Spotila fell ill with ME/CFS in 1994 and has been active in writing about ME/CFS and advocating for more research funding since the late 1990s. Occupy ME is a blog about the politics, research, medicine, and personal experience of life with ME.

Bateman Horne Center Blog
BHC News Resource
A place to get updates on what’s happening at the Bateman Horne Center, the CRC Center Clinical Core, located in Salt Lake City, UT.

Unrest
ME/CFS Documentary by Jen Brea
Jennifer Brea is about to marry the love of her life when she’s struck down by a fever that leaves her bedridden. When doctors tell her “it’s all in her head,” she turns her camera on herself and her community as she looks for answers and fights for a cure.