ME/CFS is a complex chronic neuroimmune disease whose cause is unknown. It can have many different symptoms, but the two most prominent are debilitating fatigue that is not relieved by rest and unrefreshing sleep; and post-exertional malaise – a worsening of symptoms for hours, days or longer after physical, emotional or cognitive exertion, sometimes accompanied by headaches, swollen glands, pain, gastrointestinal problems, difficulty concentrating and periods of bloating or constipation.
It is estimated that over a million people in the UK and over one million in the USA have ME/CFS. These are more than twice as many as have HIV infection or multiple sclerosis.
Many of those who have ME/CFS are unable to work and some are housebound or bedbound. Those who have the most severe cases are often unable to leave their homes and need around the clock care. Unlike some other diseases, ME/CFS does not improve with time and cannot be ‘cured’. Currently, there is no test for ME/CFS and the diagnosis is based on exclusion of other conditions that cause similar symptoms using a set of criteria. Many people are misdiagnosed.
People with ME/CFS can appear to be in good physical health and blood tests ordered by their healthcare providers typically show no abnormalities. Despite this, most adults with ME/CFS are unable to work full or part time and children with ME/CFS may be unable to attend school. Three out of four of those who are severely affected with ME/CFS are unable to live independently and are dependent on others for help with bathing, dressing, eating and toileting.
ME/CFS can be triggered by infection – herpesviruses, enteroviruses and bacterial infections like Lyme disease have been linked to the condition. It can also develop more gradually, often after a prolonged period of stress (like a major operation or childbirth) or a hormonal change like menopause or pregnancy.
Although there is no cure, there are a number of treatment approaches that can help people manage their ME/CFS. This includes “pacing” – managing your activities so you can have energy for the things that are most important to you; the use of medications to treat underlying conditions such as depression, anxiety, gastrointestinal problems and pain; and exercise and relaxation therapy.
Research is ongoing to find better ways to support people with ME/CFS, including developing new drugs that will be safe and effective. Solve ME/CFS is committed to raising awareness of this illness and ensuring that those who suffer are not forgotten. You can do your part by sharing this article on social media and encouraging your friends and family to do the same.