ME/CFS has a profound impact on the lives of patients and their families. The symptoms can be so disabling that people are unable to work, and they often have a much lower health-related quality of life than those with other chronic conditions such as multiple sclerosis, rheumatoid arthritis, and heart failure. Currently there is no cure for ME/CFS, but treatments can improve symptoms and increase functioning. The goal is to find a cause and develop a treatment.
ME is not well understood by medical professionals. This is partly because the symptoms are not easily measurable and the disease can be misdiagnosed as other conditions. Many people with ME also have a range of co-existing health problems such as depression, anxiety, sore joints, and tender lymph nodes in the neck and armpits. These issues may affect how well they manage their ME/CFS.
People with ME may be able to get help from their general practitioner or a family doctor. However, most adults with ME are referred to ME/CFS specialist teams in order to be diagnosed. These teams should have a range of healthcare professionals with expertise in assessing, diagnosing and treating ME/CFS. This might include doctors specialising in rheumatology, rehabilitation medicine, endocrinology, infectious diseases, neurology and general practice, and clinical or counselling psychologists with training and experience in ME/CFS.
Once a diagnosis is made, ME/CFS specialist teams will develop a care and support plan. They will recommend specific treatments and/or interventions to improve the patient’s ability to function, reduce pain levels, and ease fatigue.
The symptoms of ME/CFS can be very different for each person, but there are some common ones such as:
Symptoms can be triggered by physical activity, cognitive overexertion, or sensory overload. They tend to flare up a few hours to a few days after exertion. This is known as post-exertional malaise (PEM).
Many people with ME/CFS can’t go to work or school and need help from family, friends or carers. About 25% of people with ME are bedbound or housebound. People with ME have lower health-related quality of life scores than those with other conditions such as heart disease, cancer and rheumatoid arthritis.
There is no known cause for ME/CFS, although it appears that there are connections between genetic, central nervous system, and immune factors that contribute to the condition. Research is ongoing to better understand these connections so that diagnostic tools and effective treatments can be developed as quickly as possible. Solve ME/CFS is committed to accelerating the discovery of safe and effective treatments by promoting open, collaborative research at ME/CFS Collaborative Research Centers worldwide.