Chronic Fatigue Syndrome Awareness Day–May 12
May 12 is CFS/ME and Fibromyalgia Awareness Day. This date was chosen to honor the birthday of Florence Nightingale, the founder of modern nursing. Nightingale suffered from pain, fatigue and symptoms characteristic of CFS or fibromyalgia, yet had many remarkable accomplishments, including establishing the Nightingale Training School.
Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is characterized by debilitating and profound fatigue affecting the ability to work and live, and is not relieved by rest. While varying by person, symptoms include post-exertional malaise, cognitive problems, unrefreshing sleep, pain, and orthostatic intolerance.
Researchers estimate that at least one million Americans have CFS/ME, but only 20% are diagnosed with the illness. Patients, families, employers, and society endure significant costs associated with CFS/ME, which are estimated to be $18-51 billion annually in the United States. Although most common in women, CFS/ME affects persons of all ages, including children, and all race/ethnicities. Scientists have not determined the cause or causes of CFS.
The Institute of Medicine and CFS/ME
The Institute of Medicine (IOM), the health arm of the National Academy of Sciences, is a non-profit, independent organization that provides expert objective advice to the government and public about health matters. On February 10, 2015, the IOM released its first report about CFS, "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness," which was the result of a consensus committee.
This report renewed attention to CFS/ME and the people affected by this illness. Details of the report can be found here.
Getting a Diagnosis and Managing CFS/ME
Contact your doctor if you are concerned that you or family member might have CFS. Because there are no specific tests (for example, no blood or other lab test) to diagnose CFS, the diagnosis can only be made by looking at accompanying symptoms and other possible causes of fatigue. Your doctor will
- Take a detailed medical history
- Conduct a thorough physical and mental health exam
- Order a series of laboratory screening tests to help identify or rule out other possible causes of symptoms
- Order additional tests as needed to follow up
Diagnosis and treatment of CFS can be challenging. Work with your doctor and other healthcare professionals to cope during this difficult time.
If you have CFS, you may be dealing with
- Worries about your health
- Changing and unpredictable symptoms that may interfere with activities of daily living
- Memory and concentration problems that seriously affect work or school performance
- Loss of independence, livelihood, and financial security
- Changes in relationships with family and friends
Living with CFS is difficult and unpredictable. You may struggle with debilitating symptoms and other problems such as depression or frustration, but remember you are not alone. Support is very important when dealing with any illness. Your doctor and other healthcare professionals can offer help and support. And don't be afraid to ask your family and friends for help. Support also can come from a counselor or a CFS support group. Together, you can find ways to manage your illness.
Recognize that carrying out activities of daily living may be challenging for you. Avoid overdoing physical activities that may make your CFS symptoms worse. Talk to your doctor before starting any new type of activity program.