We have organized this list by the criteria used by each organization, as determined by information within their website.
While some organizations may not specifically state which criteria they use, most give information on what primer to use or how to get a diagnosis. We are categorizing them by what diagnosis or primer is used.
For those that aren't clear they are in the "Undetermined" category.
While some organizations may not specifically state which criteria they use, most give information on what primer to use or how to get a diagnosis. We are categorizing them by what diagnosis or primer is used.
For those that aren't clear they are in the "Undetermined" category.
Please share this information on these social media sites
CCC Organizations
Canadian Consensus Criteria (labeled ME/CFS) precursor to ICC.
Massachusetts CFS/ME & FM Association
"To improve the lives of all people affected by ME/CFS and FM, advancing awareness, care, treatment and research."
Board of Directors: Dr. Leah Williams, Susan Buckley, Alyssa-Rae McGinn
Directors at Large: Carol Isaacson Barash, Ken Cassonova, Phil Chernin, Charmian Proskauer, Patricia Woods
Ex-Officio: Amy Proal
Directors Emeriti: Ann Bodio, Robert Bodio, Alan Gurwitt
501(c)(3) nonprofit
"To improve the lives of all people affected by ME/CFS and FM, advancing awareness, care, treatment and research."
Board of Directors: Dr. Leah Williams, Susan Buckley, Alyssa-Rae McGinn
Directors at Large: Carol Isaacson Barash, Ken Cassonova, Phil Chernin, Charmian Proskauer, Patricia Woods
Ex-Officio: Amy Proal
Directors Emeriti: Ann Bodio, Robert Bodio, Alan Gurwitt
501(c)(3) nonprofit
The ME Society of America (MESA) (archived prior to ICC)
"A research-information and advocacy group, seeking to promote understanding of ME/CFS by disseminating information about research and advocacy issues pertaining to ME/CFS."
Founded by: Maryann Spurgin in 2002.
Board of Advisors: Raymond F. Colliton, Michael S. Allen, Joseph M. Cummins, Donald L. Peters
"A research-information and advocacy group, seeking to promote understanding of ME/CFS by disseminating information about research and advocacy issues pertaining to ME/CFS."
Founded by: Maryann Spurgin in 2002.
Board of Advisors: Raymond F. Colliton, Michael S. Allen, Joseph M. Cummins, Donald L. Peters
ME/CFS-SEID Organizations
Blue Ribbon/Forgotten Plague
Link to the "Forgotten Plague" movie and other SEID resources.
Founder: Ryan Prior
Nonprofit status unknown
Link to the "Forgotten Plague" movie and other SEID resources.
Founder: Ryan Prior
Nonprofit status unknown
ME Action
"Building a global movement to fight for recognition, education and research so that one day, all people with ME will have access to compassionate, effective care."
Medical education based on ME/CFS-SEID.
Board of Directors: Beth Mazur, Michele Pinedo, Ryan Prior, Jen Brea, J.D. Davids, Judy Gayer, Jill Hinson, Robert Sklans
Advisors to the Board: Katie Bach
Staff: Jaime Seltzer, Adriane Tillman, Espe Moreno (UK), Holly Latham, Hannah Bowlus, Laurie Jones, Ben Hsuborger, Erin Roediger
501(c)(3) nonprofit
"Building a global movement to fight for recognition, education and research so that one day, all people with ME will have access to compassionate, effective care."
Medical education based on ME/CFS-SEID.
Board of Directors: Beth Mazur, Michele Pinedo, Ryan Prior, Jen Brea, J.D. Davids, Judy Gayer, Jill Hinson, Robert Sklans
Advisors to the Board: Katie Bach
Staff: Jaime Seltzer, Adriane Tillman, Espe Moreno (UK), Holly Latham, Hannah Bowlus, Laurie Jones, Ben Hsuborger, Erin Roediger
501(c)(3) nonprofit
Minnesota ME/CFS Alliance
"The California Capital CFIDS Association (CCCA) provides emotional support, referrals and advice to those with the illness, their families and friends primarily in the greater Sacramento metropolitan area in Northern California."
Board of Directors: Lianne Beyerl, Lisa Alioto, Dan Curry, Suzanne Wheeler
Board Members: Steve Curry
501(c)(3) nonprofit
"The California Capital CFIDS Association (CCCA) provides emotional support, referrals and advice to those with the illness, their families and friends primarily in the greater Sacramento metropolitan area in Northern California."
Board of Directors: Lianne Beyerl, Lisa Alioto, Dan Curry, Suzanne Wheeler
Board Members: Steve Curry
501(c)(3) nonprofit
PANDORA Org (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy)
"To raise awareness and restore quality of life in persons with myalgic encephalomyelitis, fibromyalgia and related NeuroEndocrineImmune disorders."
Board of Directors: unknown
Board Members: unknown
501(c)(3) nonprofit - Provides Direct Patient Support (Michigan)
"To raise awareness and restore quality of life in persons with myalgic encephalomyelitis, fibromyalgia and related NeuroEndocrineImmune disorders."
Board of Directors: unknown
Board Members: unknown
501(c)(3) nonprofit - Provides Direct Patient Support (Michigan)
U.S. ME/CFS Clinician Coalition
"The Coalition is committed to improving clinical care for patients with ME/CFS by advancing best clinical practices, providing education for the medical community, expanding the pool of medical providers with strong expertise in ME/CFS, and providing clinical insights for researchers."
Members: List given HERE
"The Coalition is committed to improving clinical care for patients with ME/CFS by advancing best clinical practices, providing education for the medical community, expanding the pool of medical providers with strong expertise in ME/CFS, and providing clinical insights for researchers."
Members: List given HERE
Undetermined Criteria
The American ME and CFS Society (AMMES)
"Dedicated to serving the needs of patients and care givers through support, advocacy, and education."
Founder: Erica Verrillo
Board Members: Dr. Marcie Zinn (deceased), Mark Zinn
501(c)(3) nonprofit - Provides Direct Patient Support
"Dedicated to serving the needs of patients and care givers through support, advocacy, and education."
Founder: Erica Verrillo
Board Members: Dr. Marcie Zinn (deceased), Mark Zinn
501(c)(3) nonprofit - Provides Direct Patient Support
CF-Alliance CFS, ME, FM & related illnesses
"The CF-Alliance offers free international services specifically for Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME), Fibromyalgia (FM) and related illness sufferers of all ages, including their families, friends, support groups and caregivers worldwide."
Board of Directors: unknown
Board Members: unknown
Nonprofit status unknown
"The CF-Alliance offers free international services specifically for Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME), Fibromyalgia (FM) and related illness sufferers of all ages, including their families, friends, support groups and caregivers worldwide."
Board of Directors: unknown
Board Members: unknown
Nonprofit status unknown
CO Cure
"We at CO Cure are committed to dedicating our lives towards helping people that are diagnosed with CFS."
Board of Directors: unknown
Board Members: unknown
Nonprofit status unknown
"We at CO Cure are committed to dedicating our lives towards helping people that are diagnosed with CFS."
Board of Directors: unknown
Board Members: unknown
Nonprofit status unknown
Connecticut CFIDS & FM Association, Inc.
"To provide support to patients with chronic fatigue immune dysfunction syndrome, fibromyalgia syndrome, and their families."
Board of Directors: unknown
Board Members: unknown
Nonprofit status not verified
"To provide support to patients with chronic fatigue immune dysfunction syndrome, fibromyalgia syndrome, and their families."
Board of Directors: unknown
Board Members: unknown
Nonprofit status not verified
HHV-6 Foundation
"HHV-6 has long been suspected as one trigger for CFS. HHV-6 reactivation in transplant patients can cause symptoms similar to CFS, including fatigue, cognitive dysfunction and autonomic dysfunction."
Board of Directors: Kristin Loomis, Jill Chase, Sheryl Lunsford, Judith Anderson, Jason Stanley
Board Members: Mona Eliassen, Dr. Dharam Ablashi
501(c)(3) nonprofit
"HHV-6 has long been suspected as one trigger for CFS. HHV-6 reactivation in transplant patients can cause symptoms similar to CFS, including fatigue, cognitive dysfunction and autonomic dysfunction."
Board of Directors: Kristin Loomis, Jill Chase, Sheryl Lunsford, Judith Anderson, Jason Stanley
Board Members: Mona Eliassen, Dr. Dharam Ablashi
501(c)(3) nonprofit
International Association of CFS/ME (IACFSME)
"An international, non-profit organization of clinicians, scientists, professionals, patients, and advocates dedicated to the care and research of people affected by myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), fibromyalgia, and other related conditions." Based in the U.S.
Board of Directors: Fred Friedberg, Staci Stevens, Lily Chu, Sonya Marshall-Gradisnik
Board Member: Luis Nacul
501(c)(3) nonprofit
"An international, non-profit organization of clinicians, scientists, professionals, patients, and advocates dedicated to the care and research of people affected by myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), fibromyalgia, and other related conditions." Based in the U.S.
Board of Directors: Fred Friedberg, Staci Stevens, Lily Chu, Sonya Marshall-Gradisnik
Board Member: Luis Nacul
501(c)(3) nonprofit
National CFIDS Association
"Funds research to find a cause, expedite treatments and eventually a cure, as well as providing information, education, and support to people who have CFIDS (chronic fatigue and immune dysfunction syndrome also known as chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME) and many other names)." Info for paid members only.
President: Gail Kansky
Board Members: unknown
501(c)(3) nonprofit
"Funds research to find a cause, expedite treatments and eventually a cure, as well as providing information, education, and support to people who have CFIDS (chronic fatigue and immune dysfunction syndrome also known as chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME) and many other names)." Info for paid members only.
President: Gail Kansky
Board Members: unknown
501(c)(3) nonprofit
New Jersey ME/CFS Association, Inc.
"We are patients and families with Chronic Fatigue Syndrome and we are here to support, inform and help you to deal with this serious illness." Paid membership.
Board of Directors: unknown
Board Members: unknown
501(c)(3) nonprofit
"We are patients and families with Chronic Fatigue Syndrome and we are here to support, inform and help you to deal with this serious illness." Paid membership.
Board of Directors: unknown
Board Members: unknown
501(c)(3) nonprofit
The Solve ME/CFS Initiative (SMCI)
"Solve M.E. is a non-profit disease organization that works to accelerate the discovery of safe and effective treatments, strives for an aggressive expansion of funding for research that will lead to a cure and seeks to engage the entire ME/CFS community in research, advocacy, and patient support."
Board of Directors: John Nicols, Vicki Boies, Michael Atherton, Barbara N. Lubash, Maryellen Gleason
Board Members: Carol Head, Rick Sprout, Bill Hassler, Janice Stanton, Andrea Bankoski, Rona E. Kramer, Dr. Jeffrey Tobias,
Karl Zeile, Amrit Shahzad
501(c)(3) nonprofit
"Solve M.E. is a non-profit disease organization that works to accelerate the discovery of safe and effective treatments, strives for an aggressive expansion of funding for research that will lead to a cure and seeks to engage the entire ME/CFS community in research, advocacy, and patient support."
Board of Directors: John Nicols, Vicki Boies, Michael Atherton, Barbara N. Lubash, Maryellen Gleason
Board Members: Carol Head, Rick Sprout, Bill Hassler, Janice Stanton, Andrea Bankoski, Rona E. Kramer, Dr. Jeffrey Tobias,
Karl Zeile, Amrit Shahzad
501(c)(3) nonprofit
Vermont CFIDS Association
"The goals of the Vermont CFIDS Association are to: (1) raise public awareness of Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), (2) support and advocate for Vermonters who suffer the debilitating symptoms of this and related disorders, and (3) facilitate the education of patients, families, healthcare providers and primary care physicians in order to validate and establish a recognized and acceptable protocol for the diagnosis and treatment of CFIDS."
Members: Jim Boyce, Rik Carlson, Lainey Rappaport, Dr. Kenneth J. Friedman, Holly Smith, Lell Forehand, Michael Thurston, Lisa Stevens, Arlen Brownstein, Raymonde Perron, Cynthia Johnson, John Higgins, Victoria Brown
501(c)(3) nonprofit
"The goals of the Vermont CFIDS Association are to: (1) raise public awareness of Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), (2) support and advocate for Vermonters who suffer the debilitating symptoms of this and related disorders, and (3) facilitate the education of patients, families, healthcare providers and primary care physicians in order to validate and establish a recognized and acceptable protocol for the diagnosis and treatment of CFIDS."
Members: Jim Boyce, Rik Carlson, Lainey Rappaport, Dr. Kenneth J. Friedman, Holly Smith, Lell Forehand, Michael Thurston, Lisa Stevens, Arlen Brownstein, Raymonde Perron, Cynthia Johnson, John Higgins, Victoria Brown
501(c)(3) nonprofit
