Covid-19 Resources for People with ME


Calling all Family, Friends and Allies – Join the Movement to Support People with ME

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 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].


Categories: Advocacy, All News, Featured news, FFAME

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3 comments on “Calling all Family, Friends and Allies – Join the Movement to Support People with ME
  1. Mary Sheehan says:

    Hi .I live in Ireland and wonderig how I can join to be of any benefit to your group. However I have a friend who has severe fME and three little kids so I wish I knew more and may be able to help.

    1. Adriane Tillman says:

      Hi Mary,

      Hope you are able to join the Facebook group and call on Sept. 8th. If you’d like to receive email updates from FFAME, please fill out this google form:[email protected]&ts=5b73b57e


  2. bobbi ausubel says:

    Hi Irish Compassionate Woman,

    Can you attend the first meeting of FFAME Allies group? I would love for you to raise this exact important question at that meeting.


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