Each year on August 8, Severe ME Day, we reflect on the tremendous toll this devastating disease takes on individuals suffering from severe ME/CFS symptoms and remember the lives of those we have lost.
People living with severe ME/CFS are often bed-bound and unable to perform everyday tasks without assistance — eating, showering, and even standing are made nearly impossible. Their symptoms can worsen from light, sound, and movement. Some need 24-hour care. These severe symptoms can prevent members of our community from accessing medical care and support and lead to isolation from family and friends.
To those who are suffering from severe ME/CFS, please know that you are not alone. We recognize and stand with you — those who have just been diagnosed, those whose symptoms have worsened, those who have been suffering for years and decades, and those who feel invisible because of their severe ME/CFS. We see you, we see your suffering, and we are fighting every day to get you your life back.
If you have a loved one with severe ME/CFS, let them know you are thinking of them today. We recognize and honor the work and dedication of caregivers and families — your ability to help improve the lives of your loved ones cannot be overstated. By listening to and respecting their experiences, giving energy where they cannot, and offering your assistance and care, you are providing hope. We thank you for your compassion.
Solve M.E. President Oved Amitay Shares His Thoughts On Severe ME Day
Below you will find resources to help those with severe ME/CFS change the narrative and improve outcomes for this terrible disease:
Help Individuals with Severe ME/CFS Join the You + ME Registry
By helping individuals with severe ME/CFS provide their data and health history to the You + ME Registry and Biobank, we can ensure that EVERYONE, no matter what severity, can benefit from the big data revolution. The Registry will give us a more complete understanding of the disease and drive us toward effective treatments.
Already, the You + ME Registry is providing key insights into the experiences of people with severe ME/CFS. As of August 2021, 38% of the over 2,000 individuals with ME/CFS enrolled in the Registry report severe ME/CFS symptoms.
To help someone with ME/CFS contribute their health data to the You + ME Registry, click here.
Share Your Stories to Humans of M.E.
Sharing personal experiences is critical to increasing understanding of severe ME/CFS — individual disease journeys are complex and varied. No two experiences with ME/CFS are the same, and in order to truly understand and begin finding a cure for this disease, we must ensure that your experiences are heard. Our Humans of M.E. project is dedicated to collecting and sharing these stories.
We recently added new categories to Humans of M.E. to amplify your unique and compelling stories, including a new “Caregivers of M.E.” category, in recognition of the tremendous role caregivers play in the lives of people with ME/CFS.
To submit your story or help someone with severe ME/CFS share their story with Humans of M.E., click here.
Find Resources Through Support Groups
Living with severe ME/CFS — as a patient, caregiver, or loved one — can be an isolating and heartbreaking experience, but you don’t have to do it alone. Support groups and resources, such as those provided by the Center for Chronic Illness, aim to promote well-being for those impacted by chronic illness through support and education.
Other groups, such as the ME/CFS Phone Support Group, are volunteer-led and provide peer-to-peer support and social interactions to those affected by ME/CFS. You can find additional tools on Solve M.E.’s resources for people with M.E. and caregivers webpage.
Increase Awareness of Severe ME/CFS by Sharing To Social
Our mission at Solve M.E. is to make ME/CFS widely understood, diagnosable, and treatable. We thank you for your trust and continued partnership as we work towards a world free of ME/CFS.