ME/CFS International Awareness Day

Florence Nightingale

May 12 honors the birthday of Florence Nightingale, known as the “Lady with the lamp”. She is considered the founder of modern nursing and established the Nightingale Training School for Nurses in 1860 as part of her efforts to improve hygiene practices.

May 12 is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) International Awareness Day. It’s not just fatigue. ME/CFS is a serious, long-term illness. Those affected are unable to perform their usual activities and suffer from profound fatigue that is not relieved by rest. A distinguishing feature is post-exertional malaise (PEM), which is the worsening of symptoms after physical or mental activity. Other symptoms include unrefreshing sleep, dizziness, problems thinking and concentrating, worsened memory, and pain.

Outreach: Awareness & Education

CDC recognizes the importance of outreach to increase awareness and education of ME/CFS. On May 12, 2023, CDC will “light up” its Atlanta campus in blue in recognition of ME/CFS International Awareness Day. In 2022, CDC hosted its 20th Stakeholder Engagement and Communication (SEC) call. In May and December of that year, guest speakers delivered presentations on “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Management Options,” (Dr. Stephen Gluckman) [PDF – 38 pages] and “Neurovascular Dysregulation During Exercise in ME/CFS & Long COVID,” (Dr. David Systrom, Brigham) [PDF – 57 pages].
A CDC/WebMD collaboration assessed knowledge, attitudes, and beliefs of ME/CFS among the general public. John Whyte, MD, MPH, Chief Medical Officer of WebMD, shares the findings in two videos. He discusses Misconceptions Around ME/CFS with a patient with ME/CFS and Valerie Montgomery Rice, MD, President and Dean of Morehouse School of Medicine. A second video aims to reach healthcare professionals.

CDC continues its Voice of the Patient series to recognize people living with ME/CFS and to share their experiences in their own words. We hope these stories foster patient connections and provide valuable insights for healthcare professionals. Eleanor’s story tells the story of a nurse with ME/CFS following an acute COVID-19 illness.

ME/CFS and Long COVID: What We Know

Long COVID brings greater attention to ME/CFS, as both illnesses share many of the same symptoms. In November 2022, CDC’s Dr. Jennifer Cope participated in a Q&A with Medscape to discuss some of the similarities and differences between ME/CFS and Long COVID. For both conditions, treatment focuses on addressing the most troublesome symptoms. Healthcare professionals can turn to what is known about ME/CFS and apply that knowledge to patients with Long COVID. CDC is actively working with our partners to better understand the long-term effects of COVID-19 and find ways to help people with Long COVID. Please visit Long COVID or Post-COVID Conditions | CDC for more information.

ME/CFS in Children and Younger People

CDC partnered with the National Association of School Nurses (NASN) to conduct the School-Based Active Surveillance (SBAS) project. The SBAS project trains school nurses to track chronic absenteeism among students due to chronic health conditions, including ME/CFS. CDC participated in a podcast with staff from the Journal of School Nursing (JOSN) in February 2023 to share results from the first phase of the project.

In conjunction with ME/CFS Awareness Day, the ME/CFS program released a podcast to review pediatric ME/CFS and how it compares to ME/CFS in adults. Hear CDC’s Dr. Anindita Issa discuss ME/CFS in children and younger people and share current resources for healthcare professionals and families on this podcast.

A New Resource for Healthcare Providers

On October 1, 2022, the ICD-10-CM codes were updated to include – for the first time – a code for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Healthcare professionals can now use G93.32 as a diagnostic code for ME/CFS. ME/CFS patient advocacy organizations worked to make recommendations for the new codes, and the new codes will help public health efforts in raising awareness of ME/CFS. Healthcare professionals can bill and get reimbursed for ME/CFS-related cared, and officially document an ME/CFS diagnosis in the medical record, allowing for tracking of cases.

Join CDC this year in supporting the ME/CFS community.

  1. Wear blue to raise awareness. Show support for people with ME/CFS, their families and caregivers, and researchers who study ME/CFS by wearing blue on May 12.
  2. Spread the word on social media. Share information about ME/CFS to help educate your followers. Retweet CDC messages and use the hashtag #MECFSAwareness.
  3. Attend a virtual event. Look for local online events in your community.
  4. Share your personal stories. If you or a loved one is living with ME/CFS, share your story with neighbors and friends.
  5. Learn more. Check out the links under “More Information,” and share what you learn with family and friends.