If you’re suffering from myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS), extreme tiredness can make it difficult to get by. This can impact your career, relationships and mental health. The good news is that there are steps you can take to live a more fulfilling life with ME/CFS.
ME/CFS is a complex illness and it’s not always easy for doctors to recognize it. It can develop suddenly or over months or years. It affects people of all ages and backgrounds. Research is ongoing to understand why some people develop ME and others don’t. It is not a psychiatric disorder and it’s not caused by lack of exercise, as some people believe.
Many people who have ME/CFS have one or more other diseases, called comorbidities. Common comorbidities include fibromyalgia, which can cause widespread muscle pain and unrefreshing sleep; postural orthostatic tachycardia syndrome (POTS, increased heart rate upon standing); gastroparesis/irritable bowel syndrome; and Ehler’s Danlos Syndrome. These conditions may increase the symptoms of ME/CFS and should be diagnosed and treated. Treating these comorbidities can improve a patient’s quality of life and help them achieve more functional independence.
It’s important to have a doctor who understands ME/CFS and is prepared to listen and answer questions. Doctors who have had ME/CFS themselves or who are family members of patients with ME/CFS can be particularly helpful in providing support and care. They can also help educate their colleagues about ME/CFS and advocate for their patients.
Educating the medical community is a critical step in improving access to treatment and care for patients with ME/CFS. Medical schools, residency programs and continuing education courses can all play a role in educating future physicians about ME/CFS and how to best diagnose and treat it.
In addition, educating the public about ME/CFS is important to raise awareness and reduce stigma around the condition. This can be done through outreach activities such as presenting to community organizations and schools, participating in media interviews and producing educational materials. You can learn more about ME/CFS and what it’s like to have the disease by watching the award-winning documentary film, “UNREST.” You can also find additional resources on our website and in the ME/CFS Patient Guide.