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U.S. Other Criteria
Organizations

(updated 09/18/20)

Image of United States flag in the shape of the country.
Join ME International

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.

Please share this information on these social media sites

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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


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



ME/CFS-SEID Organizations

Blue Ribbon/Forgotten Plague
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 as of 4/4/22:  Beth Mazur, Jill Hinson, Michele Pinedo, Judy Gayer, Jennifer Brea, JD Davids, Ryan Prior, Robert Sklans
Staff:  Jaime Seltzer, Adriane Tillman, Espe Moreno (UK), Holly Latham, Hannah Bowlus, Ben Hsuborger, Erin Roediger, Steven Molony
501(c)(3) nonprofit


ME/CFS San Diego
"Our goal is to work with other organizations to make San Diego a leader in ME/CFS awareness, support, research, medical access, and education."
Board of Directors:  Deborah Holcomb, David Holcomb, Chrisanna Johnson, Rachel Riggs, Janice Riedel
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

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)


The Solve ME/CFS Initiative (Solve M.E.)
"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, Barbara N. Lubash, Michael Atherton, Rick Sprout, Oved Amitay, Vicki Boies, Carol Head, ...
501(c)(3) nonprofit

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


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


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


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


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


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


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


National CFIDS Foundation
"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


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


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  • Home
    • Current Newsletter
    • Members in the News
    • Archived Newsletters
    • Advocacy
    • Board of Directors >
      • Annual Report 2021
      • Annual Report 2020
  • Criteria
    • Understanding Criteria
    • Severe ME
    • FAQs about ME
    • The History of ME
  • Medical/Research
    • Primer/Info Sheets
    • Patient Resources >
      • Communicate w/Doctor
      • ER Info for pwME
      • Assistance
      • Do I Have ME?
      • Pain
      • PENE
      • Sleep Problems
      • Disability
      • Coping with Symptoms while waiting for a Cure
      • Medical Specialties
    • Exercise Dangers
    • Published ME-ICC Studies >
      • Published ME-CCC Studies
    • Possible Biomarkers
    • Videos / Music
  • Orgs
    • Crisis Information
    • International ME-ICC Orgs
    • Australian ME-ICC Orgs
    • Canadian ME-ICC Orgs
    • E.U. ME-ICC Orgs
    • German ME-ICC Orgs
    • Irish ME-ICC Orgs
    • Japanese ME-ICC Orgs
    • New Zealand ME-ICC Orgs
    • Norwegian ME-ICC Orgs
    • Portuguese ME-ICC Orgs
    • South African ME-ICC Orgs
    • Spanish ME-ICC Orgs
    • Swiss ME-ICC Orgs
    • UK ME-ICC Orgs
    • US ME-ICC Orgs
  • Connect
    • Membership Application
    • FB Groups
    • Committees
    • Contact
  • Blog List
    • Outside Blogs on ME
  • Donate
    • Pulse Oximeter Fundraiser