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Abstract drawing of people holding hands. They are different colors, like green, purple, yellow, each with a red heart drawn on them.

Advocacy and Education

ME Action

A global, grassroots network for people with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome


MEpedia is a project founded by MEAction, powered by the patient community, and built by volunteers including patients, students, and researchers. We are crowd-sourcing a knowledge base on the history, science and medicine of MECFS, and related diseases.

American ME/CFS Society

The American ME and CFS Society is dedicated to serving the needs of patients and caregivers through support, advocacy, and education. We seek 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.

Solve ME/CFS Initiative

The Solve ME/CFS Initiative (SMCI) has been the leading organization focused on myalgic encephalomyelitis (ME), commonly referred to as chronic fatigue syndrome (CFS), since being founded in 1987. 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.

Phoenix Rising 

A very information site. I most often end up here because of the very active forum community it hosts. It is a great place to ask and answer questions.

CFS Remission 

CFS Remission is a dense website focusing on microbiome analysis and intervention for ME/CFS, Lyme, Fibromyalgia, etc. If you’ve had microbiome analysis done and want to learn more, this is a great place to go. Same if you’re thinking about adding a probiotic to your health interventions.


Patient Support

Ithaca NY Area ME/CFS Support on Facebook. A place for ME/CFS patients in the Ithaca, NY area to connect, share resources, and find support.

#MEAction New York on Facebook. This is a group for New Yorkers living with or affected by ME.

#MEAction master group list

Myalgic Encephalomyelitis Global on Facebook. This is a large (almost 12,000 member) group.  The purpose of this group is for people with ME/CFS (and/or their carers) to interact and support each other while living with these chronic illnesses. It provides a place where people can share helpful tips, ask questions and learn from each other’s experiences, band together and support each other to create better lives for ourselves and others.

25% of ME: Support Group for Severe CFS/ME on Facebook. This is a support group for housebound and/or bedbound folk with CFS/ME and their caregivers.

Chronic Fatigue Syndrome / Myalgic Encephalomyelitis on Reddit

Phoenix Rising: ME / CFS Forums