You may have watched your friend or relative struggle with myalgic encephalomyelitis (ME) unsure of what is happening or how you can help.

#MEAction is supporting a new project called FFAME – Family, Friends and Allies for ME – to build a network of support for family, friends, caregivers and allies for ME to come together, support one another, learn more about the disease and how we can improve the lives of people with ME. The group also aims to equip allies who wish to engage in advocacy work with the knowledge and tools to do so.

The founders of FFAME are three parents of offspring with ME: Bobbi Ausubel, Denise Lopez-Majano, and Jane S. A note from Bobbi:

“Please join and invite your friends, caregivers, neighbors, family members, partners, ex-boyfriends/girlfriends/partners, doctors, beauticians, lawyers, congress persons, club members, school alums, teachers, nieces, nephews, in-laws, grandparents, landlords, tenants, Facebook friends, folks on the street corner and in buses, shopkeepers, UPS deliverers, cashiers, Linked-in joiners, those calling on phone for donations, favorite writers, actors, music entertainers, enemies. Don’t forget anyone. Let’s build a big community of those who care. We are just the beginning.”

Join FFAME

Join the ongoing conversation on the FFAME Facebook Group. Join the email list to receive updates or to join the conversation if you’re not active on Facebook. Email us anytime with comments/questions at [email protected].

Join the Call

Our first call will take place on Saturday, Sept. 8 at 4 p.m. EST / 1 p.m. PST. RSVP here. If you haven’t already had a chance to watch Unrest, a documentary about ME, we highly encourage you to do so before the call. You can find it on Netflix. You can also watch a panel discussion about the film here.

Volunteer with FFAME

As we get started, FFAME is seeking volunteers to assist with social media, writing and coordinating. Please email us at [email protected] if you’re interested in serving as a volunteer off-the-bat.

For Caregivers of people with ME, #MEAction has also launched a Caregivers Support Group dedicated to the experience and needs of caregivers. We have active discussions on our Facebook Group and host monthly video-conferencing calls. Email us anytime with comments/questions or to join the email list at [email protected].