ME/CFS International Awareness Day

Florence Nightingale

Illustrated by Nigel Buchanan

May 12 honors the birthday of Florence Nightingale, founder of modern nursing. In 1860, she established the Nightingale Training School, despite being virtually bedridden with an illness resembling ME/CFS or fibromyalgia.

May 12 is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) International Awareness Day. We stand together with the millions of people who suffer from ME/CFS and other chronic illnesses. ME/CFS is a serious, long-term illness that affects multiple body systems. People with this illness suffer from inability to perform usual activities associated with extreme fatigue, post-exertional malaise or PEM, sleep problems, and other problems with thinking and concentrating, pain, and dizziness.

Education and Awareness

We raise awareness through education, outreach, and research, and by listening to the ME/CFS community. Upholding its commitment to ME/CFS outreach and communication, CDC hosts Stakeholder Engagement and Communication (SEC) calls twice a year. In May and December 2021, guest speakers delivered presentations on “Exercise Testing in the MCAM Study” (Dr. Dane Cook) pdf icon[PDF – 2 MB] and “Is ME/CFS Another Face of Long Covid?” (Dr. Hector Bonilla). pdf icon[PDF – 5 MB]

CDC held its third Roundtable meeting in 2021, which focused on collaboration and building stronger partnerships. The virtual meeting, titled “Working Better Together,” inspired dialogue and fostered teamwork between patients with ME/CFS, ME/CFS experts, researchers, advocates and caregivers, and staff from various federal agencies and healthcare associations. A summary report pdf icon[PDF – 8 pages] of the meeting along with the agenda and slide presentations are available on the CDC ME/CFS website.

CDC continues to offer new stories in the Voice of the Patient series. These first-hand accounts of what it’s like to live with ME/CFS help make connections and create understanding within the patient community. The stories also provide valuable insights for medical professionals. Recent additions include Adhira and Neel’s story, an account of a mother and son both living with the disease, and Katherine’s story, which bravely tells the story of a married couple and their journey with ME/CFS.

ME/CFS and COVID-19: What We Know

CDC has been working to learn more about coronavirus disease (COVID-19) and the health effects it has on people. As the COVID-19 pandemic has continued, it’s become clear that some people who have had COVID-19 might not recover right away. Instead, they develop a longer-lasting illness (called post-COVID conditions). Many of the symptoms people with post-COVID conditions report include severe fatigue, headaches, brain fog, sleeping difficulties, and anxiety or depression.

Learning about the long-term effects of COVID-19 can help researchers understand ME/CFS, and what we know about ME/CFS may help people with long COVID. Currently, there are limited data and information. 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.

Resources for Healthcare Providers

Educating healthcare professionals is a key component to ensuring providers are ready to diagnose and care for people with ME/CFS. Currently CDC has four continuing education courses available through a partnership with Medscape. This includes a new Spotlight course with expert faculty Dr. Benjamin Natelson from Icahn School of Medicine at Mt. Sinai; Dr. Donna Felsenstein, Harvard Medical School; Dr. Mitchell Miglis, Stanford University; and Dr. Dale Strasser, Emory University. The course, titled “A Fresh Look at ME/CFS: Diagnosis and Management of a Multisystem Illness,” is geared toward an individualized treatment plan to manage symptoms associated with ME/CFS.

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.