According to a story from meaction.net, Jaime Seltzer, the Director of Scientific and Medical Outreach at #MEAction, recently spoke at the Third Annual Working Group Meeting on the Molecular Basis of ME/CFS, which was held at Stanford University. Myalgic encephalomyelitis, or chronic fatigue syndrome, is a poorly understood and underdiagnosed rare disorder. For her talk, Jaime discussed the need for a patient registry to help gather more data about this mysterious disease and the challenges that lay ahead.
About Myalgic Encephalomyelitis (ME)
Myalgic encephalomyelitis, also known as chronic fatigue syndrome, is a rare condition which is most characterized by long term fatigue and other symptoms which severely impact a person’s ability to fulfill daily tasks. The exact cause of the syndrome is poorly understood. Risk factors may include family history, low physical fitness, old age, mental health problems, and allergies. Women are also more likely to get the myalgic encephalomyelitis than men. The characteristic symptom is severe, persistent fatigue that has no definitive cause and is not resolved with rest; other symptoms include difficulty sleeping, worsening of symptoms following exercise, night sweats, sensitivities to certain foods, noise, or odors, muscle and joint pain, headaches, irritable bowel syndrome, and sore throat. Symptoms may appear gradually or suddenly, and in severe cases can leave a patient bedridden. Some treatments may include energy management strategies such as pacing and changes in diet. To learn more about chronic fatigue syndrome, click here.
Patient Registries: Benefits and Challenges
Patient registries can be critical research tools that allow for the gathering of critical data about a disease. Researchers can use data from the registry to identify trends, improve rates of diagnosis, and even help develop new treatments. However, to create a registry, patients must first be found and identified. This is much easier said that done with myalgic encephalomyelitis. Most patients live undiagnosed and the rate of diagnosis is so low that the exact prevalence of the condition is still unknown.
With these challenges in mind, it is likely that developing a patient registry for this disease is going to take a lot of time and effort. However, the benefits for this rare patient community would be more than worthwhile.
