Solve M.E. has launched a campaign to help increase awareness of—and ultimately research funding for—Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The campaign, “Humans of M.E.,” is a takeoff of the popular “Humans of New York” photoblog and Facebook page.
The aim of the campaign is to show the faces and stories of those suffering from ME/CFS so that those who are in charge of allocating research funds cannot deny the widespread devastation this disease has inflicted on so many for so long.
Your story makes a difference! We now have the capability to distinctly display stories from different types of ME/CFS community members, including:
Humans of ME/CFS
ME/CFS affects as many as 2.5 million Americans and up to 24 million people across the world. People with ME/CFS experience a wide spectrum of disability, ranging from mild symptoms to those who are unable to work at all. 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.
Caregivers of ME/CFS
For some individuals suffering from ME/CFS, particularly those experiencing severe symptoms, caregivers are an essential resource. People with ME/CFS with severe symptoms may be bedridden, and require assistance with everyday activities such as eating, standing, or bathing. For any caregivers who have supported people with ME/CFS, as loved ones, partners, friends, or round-the-clock caretakers.
COVID-19 Long-Haulers with ME/CFS Symptoms
As the number of COVID-19 cases rises around the country, and the world, a growing group of individuals are continuing to experience symptoms of fatigue, headaches, shortness of breath, and others, after the typical “recovery” period for the virus.
People with ME/CFS commonly report that an infection preceded their chronic illness. A number of viruses have been implicated as triggers of ME/CFS, including previous coronavirus strains (e.g. the 2003 SARS coronavirus outbreak). Experts are predicting that a significant number of people will develop post-viral problems that could be lifelong. If you think you are one of these “long-haulers,” we want to hear from you.
Misinformation Hurts M.E.
ME/CFS is not psychiatric in nature and it is not synonymous with “chronic fatigue.” For decades, mischaracterization of the disease has profoundly impacted scientific research and medical care, leaving patients misunderstood and without the support they need. Many patients have even been falsely advised to pursue graded exercise therapy, or GET, which has actually been shown to exacerbate ME/CFS symptoms. If you have received harmful or misleading information about ME/CFS, we want to hear from you.
A few suggestions:
- The best stories are 500 words or less. We know this will be challenging since many stories have been decades in the making and there is much to tell, but to have the impact we desire, being brief is best.
- The best stories share your personal experiences and do not read like a medical chart. How would you describe your journey with ME/CFS to an old friend you have not seen in many years and have only a few minutes with? What is your life like with the disease? How has it affected those around you?
- Please upload a photo. We understand that this may be challenging for some in our community, but it’s essential to put a face with each story. If you need help, perhaps a family member, neighbor or friend could lend assistance.
- While we ask for first and last names on the form, we will only use first names and the first letter of your last name on this site.
Please contact us with any questions at JBrownclark@solvecfs.org.
We can’t wait to read and share your stories!