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Caring for People with ME

What is ME?

Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems.

Learn more about ME


How does ME impact caregivers?

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. We hope the resources below will help you better navigate the care of your loved one, your own self-care, and connect with others walking as similar journey.


Caregivers’ Guide and Brochure

#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. You can browse even more brochures, fact sheets, and other tools here.

 


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Support & Advocacy Groups

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


Global Directory

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.

 


Talk to Us

#MEAction is all about building community and taking action together. If you have an idea for an awareness, education, or advocacy project, want to learn how to get more involved in #MEAction, or need help beyond the patient support and caregiver resources we provide, you can sign up for a 15-minute phone call with a member of our team.

 


Volunteer

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.

 


Learn more about ME

#MEAction handout on the Diagnosis & Management of ME (2018)

#MEAction ME/CFS Research Summary (2017)

Films, Books, Music About ME

From in-depth investigative journalism to personal storytelling, these films, books, podcasts, and other media are a great way to learn more about the experience of living with ME

ME in the news

Check out our curated list of in-depth features, TV reports and seminal articles and essay on myalgic encephalomyelitis and chronic fatigue syndrome.


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