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May 12 is ME/CFS and Fibromyalgia International Awareness Day

Large group of diverse people

May 12 is ME/CFS and Fibromyalgia International Awareness Day.

Myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS) is a serious, long-term illness characterized by substantial disability affecting daily activities. It 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, dizziness, 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, among people with ME/CFS identified through public health efforts, fewer than 1 of 5 people reported having received a diagnosis from a healthcare provider. This means that the illness is frequently not being diagnosed.

How to Participate in ME/CFS Awareness Day

Blue ribbon

ME/CFS Awareness Day is being observed around the world in many different cities and countries. This day helps bring awareness to ME/CFS patients, families, caregivers, and researchers. You can show your support by a range of activities:

  • Wearing the color blue on May 12, 2018.
  • Looking for and supporting local ME/CFS events in your community.
  • Considering planning an event if there is not one in your community.
  • Sharing your personal stories about ME/CFS.
  • Telling a neighbor or friend about ME/CFS.
  • Learning more about ME/CFS (see links below).

ME/CFS Voice of the Patient

A new section of the ME/CFS CDC website shares stories from patients with ME/CFS. The “Voice of the Patient” project allows patients to share their experiences with ME/CFS. Each patient shares a story in his or her own words.

To see this new section please go to: https://www.cdc.gov/me-cfs/patient-stories/index.html

Getting a Diagnosis and Managing ME/CFS

Contact your doctor if you are concerned that you or a family member might have ME/CFS. There are no specific tests to diagnose ME/CFS (for example, no blood or other lab test). Evaluation of ME/CFS requires multiple stages.  Your doctor will

  • Take a detailed medical and family history
  • Conduct thorough physical and mental health exams
  • Review any recent laboratory tests and order blood, urine or other tests, as needed, to help identify other possible causes of symptoms
  • Order additional tests as needed to follow up on any tests that might not be normal or to check on any changing symptoms

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.

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