Myalgic Encephalomyelitis is a complex, challenging disease for everyone involved – not least the caregiver or carer. Caring for someone with ME will require adaptability, steadfast patience and commitment over many years, if not a lifetime.
#MEAction has crowdsourced the advice in this guide and companion brochure from caregivers who care for both adults and children. We hope they will equip you to better navigate the long, convoluted journey of this disease.
Find support and fellowship. Take action for our loved ones with ME.
Caregivers’ Support Group: The Caregivers Facebook Support Group is a space where caregivers can support one another, discuss their joys and struggles, find community and self-care, and exchange ideas and helpful information. This is a space for caregivers only.
Friends, Family and Allies for ME: FFAME (Friends, Family, and Allies for ME) is a network of individuals who are friends, family, or otherwise allies to people with ME. FFAME has two aims – to support caregivers of people with ME, and to bring healthy allies into the advocacy work.
Living with ME Support Group: Join the Living with ME Support Group on Facebook to learn about the disease from people who have ME.
All recommended groups: Caregivers Facebook Support Group | #MEAction Friends, Family and Allies | #MEAction Global | #MillionsMissing | Time for Unrest |#MEAction USA |#MEAction UK |#MEAction Network Australia | Join a local advocacy group | View all Facebook groups
Browse our global directory of clinics, research centers, advocacy organizations, and support groups to find resources near you. Check out our directory of ME doctors crowdsourced from people with ME.
What to learn more about getting involved with #MEAction? Need support for your advocacy work? Want to discuss an idea for a new initiative? Sign up for a 15-minute appointment with Ben HsuBorger, #MEAction’s community organizer.
We are always looking for patient volunteers and healthy ME allies to join our team. If you are interested in helping, please get in touch via this form.
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