The American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society, AMMES (pronounced “aims”), was founded by Erica Verrillo, a long-time ME/CFS patient and co-author of Chronic Fatigue Syndrome: A Treatment Guide. Initially, AMMES was sponsored by the Mass CFIDS/ME and FM Association, one of the oldest regional non-profits in the country. In July of 2016, AMMES was incorporated as a non-profit in the state of Massachusetts and a month later it received its national non-profit status as a 501(c)(3) organization. (EIN: 81-3562025)
The mission of AMMES is to serve the entire ME/CFS community. That includes patients, their families and caregivers, the physicians who treat them, and the researchers who seek to find biomarkers and a cure. First and foremost, AMMES addresses the practical concerns of ME/CFS patients: How do I find a doctor? What treatments are effective? Where can I find support? AMMES is also committed to coordinating with all ME/CFS organizations, nationally and internationally, in the true spirit of cooperation.
BOARD MEMBERS
Dr. Mark Zinn, Coordinator, Scientific and Medical Advisory Committee
Mark Zinn obtained his Ph.D. in Psychology at DePaul University, working with Dr. Leonard Jason. He has a diversified background in quantitative EEG, psychology, computer science, graphic arts, piano performance, and applied psychophysiology. Between 2012 and 2014, Mark was a research consultant for the ME/CFS Initiative team headed Dr. Jose Montoya at Stanford University School of Medicine. During that time, he was involved in two major studies utilizing techniques in EEG to yield objective measurements for evaluating cognitive impairment in patients with ME/CFS, linking the patients’ symptoms to brain regions. Currently, Mark is a director and investigator at the NeuroCognitive Research Institute in Chicago, IL, where he conducts studies which model brain connectivity in patients using 3-D neuroimaging EEG techniques.
Susan Zipf, Patient Advocate
Susan Zipf is a graduate of Warren Wilson College, and an NC Certified Support Specialist, working with people who have developmental or mental disorder, and people with Substance Use Disorder. She is the mother of four sons, a “bonus” son and a “bonus” daughter; and the grandmother of eight grandchildren. In her own words, “I cared for my husband for 14 years of disability, and when he passed away, I wanted to do something so I could continue to care for people. I’m a natural caregiver, and tend to “Mother” everyone. I also want to open a Peer Support Living Room.” Susan is a long-time ME/CFS and fibromyalgia patient.
Call for Board Members
AMMES is actively recruiting members to serve on the board. Board members must demonstrate knowledge about the disease, and share a deep commitment to serve the community. We are looking for board members to serve in the following positions (all must be US citizens or residents):
Webmaster – must have IT background
Treasurer – must have a background in bookkeeping, ability to file nonprofit tax returns
Clerk – takes notes on meetings and communicates with the board, needs to reside in Massachusetts
Fundraising coordinator – should have experience fundraising for non-profits
Outreach – should have experience with community outreach
Editor – keeps website information up to date, assembles newsletter – experience with WordPress a plus
Please contact us at admin@ammes.org if you would like to serve on the board!
SUPPORTERS
The Solve ME/CFS Initiative (SMCI)– was founded in 1987 and has established itself as the leading charitable organization dedicated to myalgic encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) – also known as chronic fatigue and immune dysfunction syndrome (CFIDS).
The OMF supports collaborative medical research to find effective treatments and diagnostic markers for ME/CFS, brings experts from around the world to brainstorm and participate in targeted initiatives, supports health care education about chronic complex disease, and advances translational research and information-based research into optimum clinical medicine, including the diagnosis and treatment of poorly understood diseases.
Founded by Rich Carson in 1988, ProHealth’s mission is to support sufferers of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia by offering quality nutritional supplements, products that make life easier for ME/CFS and Fibromyalgia patients, and targeted news, information and community access. Rich has been a prolific fundraiser in the United States for research against the disease since 1986.
Cort Johnson, founder of Phoenix Rising, launched Health Rising in 2010. The site features Cort’s well-known blog, as well as as an active Forum for ME/CFS patients.
National Fibromyalgia & Chronic Pain Association
The National Fibromyalgia & Chronic Pain Association unites patients, policy makers, and healthcare, medical and scientific communities to transform lives through visionary support, advocacy, research and education of fibromyalgia and chronic pain illnesses.
Senior Fellow in Public Health in Journalism at the Center of Global Public Health, School of Public Health, University of California, Berkeley, California. Dr. Tuller has been a reporter and editor for ten years at the San Francisco Chronicle, served as health editor at Salon.com and frequently writes about health for The New York Times.
International Supporters
Action for ME (UK)
UK charity Action for M.E. takes action to end the ignorance, injustice and neglect faced by people with M.E. It offers information, support and advice to children, families and adults, helping them make informed choices about the care and support that’s right for them; and works collaboratively with professionals, policy-makers and researchers to secure change for the future.
ME Foreningen (ME Association) – Denmark
The Danish ME Association is a patient association for the disease ME (Myalgic Encephalomyelitis). The association provides support for patients and works to increase the biomedical knowledge of ME in the Danish health system, so that ME patients are diagnosed and treated correctly according to the International Consensus Guide.
Hope 4 ME & Fibro Northern Ireland
Hope 4 ME and Fibro is a charity that has the full support from Newry, Mourne and Down Council and local politicians. Their aim is to accomplish ME patient care services in Northern Ireland. They raise funding for Bio-Medical research, liaise with all major ME and Fibromyalgia charities both in UK and Ireland and highlight awareness at every opportunity.
ME-föreningen (ME association, Sweden)
The ME association works for people with Myalgic Encephalomyelitis (ME) to help them to live as well as possible, as well as to accelerate biomedical research. We inform, educate and work to change public perception on matters affecting patients. More knowledgeable doctors are needed, as well as more biomedical research.
ME/CFS Foundation SA (South Africa)
The ME CFS Foundation South Africa is committed to improving the quality of life of all people affected by ME/CFS in South Africa and the rest of the continent by addressing the needs of sufferers, educating the public, medical students, health care practitioners, governments and advocating for their rights.