About ME Action
Support, Advocacy & Education for ME/CFS
ME Action brings together chronically ill (often housebound) patients, their families, friends, and allies to make a positive impact for people with myalgic encephalomyelitis (ME). For a condition that is massively disabling even in so-called mild forms, ME receives little research funding and is largely ignored by the medical and scientific communities- ME Action works tirelessly (ironic word choice noted) to change that.
Why ME Action?
I was diagnosed with ME/CFS in 2023- giving an official name to the health issues that completely upended my life beginning a year before. ME Action was instrumental in both learning to adapt to life with a disabling condition and in advocating for the medical support and diagnosis I needed. Despite being relatively common, most doctors have outdated or (worse) dangerously inaccurate information, if they know about it at all.
ME Action provides a wealth of resources for patients, caregivers, and medical professionals to help patients receive better, safer care. Personally, their support has been life changing- not only for their resources and education, but for the people living with ME who have become my mentors, support system, and dear friends.
It is estimated that 84-91% of people with ME/CFS are undiagnosed and that Covid infections have quadrupled the number of people effected (half of people with Long Covid meet the diagnostic criteria). Millions are living with disabling symptoms with little support or explanation. Life with ME/CFS and Long Covid can be utterly terrifying and heartbreaking- having people who can help you advocate for yourself or who have been through the same thing can make all the difference in the world. Patients, caregivers, and doctors all deserve better resources to help manage and hopefully, one day, treat these conditions and ME Action (myself and the GA cohort included) are striving (often from our beds) to make that happen. In gratitude for all the impact ME Action continues to have, we are using our Cookie Club as a sweet call to action to find help and hope for the #MillionsMissing.
An estimated 9 million people live with ME/CFS in the U.S. alone
Source: https://millionsmissing.org/ ; https://www.nature.com/articles/s41579-022-00846-2
23 million people are currently estimated to battle Long Covid in the U.S.
Source: https://solvecfs.org/
2 million people have an M.E/CFS diagnosis independent of Long Covid with unknown millions still searching for a diagnosis. Researchers estimate that 84-91% of people with ME/CFS are undiagnosed.
Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6331450/#:~:text=Assigning%20a%20diagnosis%20of%20ME,with%20the%20disease%20(8)
Get Involved
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Join the Cookie Club
One dozen cookies in an exclusive new flavor each month taste even sweeter when they create hope and joy for children and their families.
Must be local to Atlanta -
Donate
Baby Deer donates 15% of all cookie club memberships, but together we can do so much more. Whether you donate $1, $10 or $100, it all adds up to an enormous impact.
Donations are tax deductible and go directly to ME Action -
Get Involved
So many ways to get involved.
Contribute to research (ME/ Long Covid and Healthy controls) by taking the Chronic Illness Survey
Help with advocacy work- our GA chapter meets virtually on the 1st Thursday of the month.
Join the Canary Corps- a new grassroots, peer-run program from #MEAction to help people with ME, Long COVID, and other infection- associated chronic illnesses find and access local disability services and supports.
Learn more about ME/CFS