If you have ME or CFS, you may feel like you are never fully recharged. Even after a good night’s sleep, you might still be too exhausted to do your daily activities or work. You might also be experiencing pain, unrefreshing sleep, or other symptoms. This is known as post-exertional malaise (PEM). The hallmark of ME/CFS is debilitating fatigue that doesn’t improve with time and is not significantly relieved by rest. This is different from tiredness that most people experience after a long day or an illness.
The cause of ME/CFS is unknown. However, it is believed to be a combination of genetic, environmental, and biological factors. It appears to start suddenly, often after an infection (often viral but not always), but can also develop gradually over months or years. It can follow surgery or a significant hormonal shift, such as pregnancy or menopause, but more often there is no obvious trigger.
A diagnosis of ME/CFS is based on a person’s medical history and pattern of symptoms. It can only be made by a qualified medical practitioner, such as a GP or hospital consultant, after other diseases that can cause similar symptoms have been ruled out. Unfortunately, ME/CFS is often misdiagnosed and other conditions such as depression or anxiety are sometimes incorrectly assumed to be the cause of the symptoms.
Many people who have ME/CFS are able to work part or full time, but on their worst days they are housebound or bedbound. Children may not be able to attend school and some require around the clock care. One out of four adults with ME/CFS are severely ill, needing to stay in bed or housebound and needing support from friends and family to get through the day.
Some people who have ME/CFS are unable to do any work at all and have severe relapses, possibly lasting for weeks or months. Some have other comorbidities, such as fibromyalgia (widespread muscle pain), POTS (postural orthostatic tachycardia syndrome – increased heart rate upon standing) and gastroparesis/irritable bowel syndrome (bloating and constipation).
People who have ME/CFS often report being frustrated, angry or low in mood because of the impact of their symptoms on their lives. In addition, those with ME/CFS can also have psychological problems, such as secondary depression or PTSD.
Research is crucial to finding a cure for ME/CFS. OMF supports open and collaborative research so that precise diagnostic tools and life-changing treatments can be available to all those who need them as quickly as possible.