May 12 is ME/CFS and Fibromyalgia International Awareness Day

Myalgic encephalomyelitis (ME)/ chronic fatigue syndrome (CFS) is characterized by substantial disability that affects daily activities and is accompanied by profound fatigue that is not relieved by rest. While varying by person and affecting many body systems, symptoms include severe fatigue, unrefreshing sleep, problems thinking and concentrating, pain, and worsened memory. Post-exertional malaise (PEM), a distinguishing feature of the illness, is the worsening of symptoms after physical or mental activity.

Scientists have not determined the cause or causes of ME/CFS. Although more common in women, ME/CFS affects people of all ages, including children, and people of all races and ethnicities. Individuals with ME/CFS, their families and caregivers, employers, and society endure significant costs associated with ME/CFS. These costs are estimated to be $18-51 billion annually in the United States. Researchers estimate that at least one million Americans have ME/CFS, but only 20 percent are diagnosed with the illness.

ME/CFS featured in NIH Director’s Blog

On March 21, 2017, the NIH Director’s Blog featured a special message about ME/CFS. The blog described recent studies on ME/CFS and noted research suggesting that problems with cellular metabolism, a complex biological process that the body uses to create energy, or changes in the immune system may play a role in the disease. NIH’s efforts to advance research on ME/CFS were highlighted, including information about current funding opportunities and the clinical study taking place at the NIH’s Clinical Center. Establishing a strong foundation for research on ME/CFS is the first step in expanding the field and moving quickly toward answers that will help unravel the mysteries of this disease.

To read the ME/CFS message on the NIH Director’s Blog, please visit: https://directorsblog.nih.gov/2017/03/21/moving-toward-answers-in-mecfs.

Getting a Diagnosis and Managing ME/CFS

Contact your doctor if you are concerned that you or a family member might have ME/CFS. Because there are no specific tests to diagnose ME/CFS (for example, no blood or other lab test), the diagnosis is made on the basis of characteristic symptoms and history of illness.  Your doctor will

• Take a detailed medical history
• Conduct thorough physical and mental health exams
• 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 ME/CFS can be challenging. Sometimes referrals to specialists are recommended.  Work with your doctor and other healthcare professionals to cope during this difficult time.

If you have ME/CFS, you might 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 ME/CFS is challenging. 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 ME/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 ME/CFS symptoms worse. Talk to your doctor before starting any new type of activity program.