Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, chronic neuroimmune illness characterized by extreme fatigue. It is triggered by many factors and it often comes on suddenly. ME/CFS has no diagnostic test and the cause is unknown, so doctors must consider a patient’s symptoms and medical history before making a diagnosis.
ME/CFS is a debilitating condition. It can affect all aspects of a person’s life, including work, school and family. In fact, it can leave people housebound or unable to move at all. It also has a negative impact on mental health and can lead to depression and anxiety.
Symptoms include exhaustion, difficulty thinking or concentrating, memory problems and trouble sleeping. The severity of the ME/CFS varies from person to person. It can be mild or severe and the person may experience a range of symptoms, from headaches to muscle aches. Some people have a “post-exertional malaise” or PEM, which can occur after almost any activity, from going for a walk to brushing teeth. It can last for 24 hours or a few days and can be accompanied by other symptoms, such as nausea, dizziness, or difficulty breathing.
While there is no cure, there are some treatments that can help relieve the symptoms. These include pacing, which means choosing activities according to the amount of energy a person has; using exercise to increase strength and stamina, but not pushing past the limit; taking breaks during activities; using medications to ease pain; sleep aids; and managing stress. ME/CFS can make it hard to maintain a full lifestyle, and for some, it can be a lifelong struggle.
A person with ME/CFS feels like their body is a cell phone battery that can’t be recharged — even after hours of sleep. Many patients are unable to work and must depend on others for support and care. In some cases, the disease can be very serious and devastate a family.
It’s important for people with ME/CFS to have the right information to advocate for themselves and their loved ones. Solve ME/CFS is a nonprofit organization that works to accelerate the discovery of safe and effective treatments, promotes advocacy and awareness of the disease, and seeks to engage people with ME/CFS in research. The organization is also a founding member of #MEAction, an international network of patients fighting for health equality.