The question “who am I?” is a vital one, not only for self-understanding but also for making choices that align with what matters most. It’s a common question in college applications, as it’s meant to get you thinking about what makes you unique and what your strengths and interests are.
For people with ME, these questions become even more complex. Myalgic Encephalomyelitis (ME) is a neurological disease that affects multiple body systems. It is relapsing-remitting, with symptoms getting better or worse over time. It can cause significant disability. It can be mild, with some people able to work full-time with accommodations; or severe, with many patients bedbound and not able to speak, move or communicate. ME is often accompanied by other conditions, such as fibromyalgia, postural orthostatic tachycardia syndrome (POTS), gastroparesis/irritable bowel syndrome, Ehlers Danlos Syndrome and/or mast cell disorders.
ME is triggered by infection in most patients, and it has been present worldwide since the 1930s. Infections that have been studied include Epstein-Barr virus, atypical polio, Q fever, and severe bacterial infections like Campylobacter jejuni or rotavirus. No single cause has been found, although the disease may be triggered by changes in how the immune system responds to an infection or by mental or physical stress.
It is estimated that 15-30 million people have ME/CFS, and many do not receive a correct diagnosis or appropriate treatment. There is no laboratory test that can diagnose ME, and a physician can only make the diagnosis by excluding other causes of a person’s symptoms and using one of several sets of diagnostic criteria. In addition, ME is a complex illness, and it is very difficult to treat effectively.
Open Medicine Foundation (OMF) is working to change that, by funding and facilitating ME/CFS research in collaborative centers around the world and by advocating for a standardized clinical definition of ME. Our goal is that precise diagnostic tools and life-changing treatments can be available to the millions of people who suffer from ME and related chronic complex diseases as soon as possible.