Resources

LOCAL SUPPORT GROUP

Fibromyalgia and Related Conditions Support Group

Fibromyalgia and Related Conditions Support Group is part of Allina’s Courage Kenny Rehabilitation Institute, Golden Valley, MN. Led by volunteers who have Fibromyalgia or ME/CFS. This group provides free support and resources for anyone concerned with FM, ME/CFS, EDS, IBS, Lyme, POTS, TMJ, and others. The group meets twice a month in Golden Valley, MN, or join their Facebook group. Email: FMSGMN@gmail.com.

 

ME/CFS ORGANIZATIONS

American ME and CFS Society (AMMES)

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

HealthRising

Cort Johnson is dedicated to providing timely, accurate information to people with Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia. “Cort is the quintessential patient advocate, breaking more news about this illness than many professional journalists. He has an amazing ability to absorb complex medical information and translate it into user friendly language for his readers and the CFS/ME community…” IACFS/ME.

Open Medicine Foundation

The Open Medicine Foundation (OMF) is spearheading chronic complex disease research that follows patterns of success and benefits from collaborating with leading scientists and clinicians from around the globe. These experts bring to our foundation their expertise in immunology, virology, genomics, informatics, molecular biology, epidemiology, infectious disease, oncology, pathology, and clinical medicine. The current focus is on ME / CFS / SEID (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome / Systemic Exertion Intolerance Disease), with the expectation that discoveries in this disease will bring answers to other diseases that share some of the symptoms (such as Fibromyalgia and Lyme disease).

Solve ME/CFS Initiative

The Solve ME/CFS Initiative (SMCI) 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. Through scientific research and advocacy, SMCI serves patients and researchers alike, serving as an information center for the entire ME/CFS community, and enabling SMCI to make an even stronger case for federal government ME/CFS spending, by generating verifiable and large data sets with reliable metrics.

#MEAction

#MEAction is an international network of patients fighting for health equality for Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). They build community and mobilize patients, family, and allies to make ME visible and fight for health equality. MEpedia is project was founded by MEAction, powered by the patient community, and built by volunteers including patients, students, and researchers. MEpedia is a crucial tool for advocates, researchers, doctors, policymakers, and even the general public, that will allow them to find all current information on Myalgic Encephalomyelitis in one place.

 

VIDEOS/FILMS

UNREST - Jennifer Brea (2017)

When Harvard Ph.D. student Jennifer Brea is struck down by a fever that leaves her bedridden, she sets out on a virtual journey to document her story as she fights a disease that medicine forgot. (1 hour, 38 minutes).

Invisible Illness - Video by Veronica Weber(2015) 

This mini-documentary tells the stories of three people who have been impacted by Chronic Fatigue Syndrome including Whitney Dafoe and Jamison Hill. (12 minutes).

The Forgotten Plague - Ryan Prior (2015)

An afflicted journalist embarks on a quest to find out why the CDC and medical system have neglected his disease and left millions sidelined from life. (1 hour, 21 minutes).