May 12 is ME/CFS and Fibromyalgia International Awareness Day
May 12 is ME/CFS International Awareness Day, a day to bring attention to how ME/CFS affects those suffering from the illness.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. Often, people with ME/CFS may not be able to do their usual activities. People with ME/CFS have severe fatigue and sleep problems. ME/CFS may get worse after people with the illness try to do as much as they want or need to do. This symptom is known as post-exertional malaise (PEM). Other symptoms can include problems with thinking and concentrating, pain, and dizziness.
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, 2019.
- 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).
Get Informed, Get Diagnosed, and Get Help
ME/CFS remains a poorly understood illness – there is no known cause and many people who have ME/CFS have not been diagnosed. We have posted a video that focuses on the daily challenges of ME/CFS from the perspective of the patient, including the most pertinent challenge of having to miss important life events. We hope this video raises awareness about how debilitating ME/CFS can be. You can watch this video here.
Additionally, the updated website has a section dedicated to sharing stories from patients with ME/CFS. The “Voice of the Patient” project allows patients to share their experiences with ME/CFS. Read stories each patient shares in his or her own words.
Join us in taking action to raise awareness about ME/CFS and lend support to those who have been affected by this illness.
What Can You Do?
Educate. Knowledge is key to raising awareness about ME/CFS. For this awareness day, take time to learn more about this illness by visiting any of the links below. Share your personal stories about ME/CFS and take the time to listen to others’ stories.
Support. During this awareness day, there are many ways you can show support. Wear the color blue on May 12, 2019, to raise awareness and show support to patients, families, caregivers, and researchers of ME/CFS. Use social media to spread knowledge about ME/CFS and to highlight individuals who suffer from this illness.
What Can Healthcare Providers Do?
A new section of CDC’s ME/CFS website for healthcare providers incorporates recommendations from the 2015 Institute of Medicine (IOM) reportexternal icon. In addition to the updated diagnostic criteria, the report also provides healthcare professionals with insight into the challenges and barriers of caring for patients with ME/CFS.
Listen. ME/CFS is a complex, real illness that is difficult to diagnose. Each patient is unique, and requires an individualized treatment program that best meets the needs of their illness. Listen to them and communicate with them in order to deliver effective care.
Empathize. ME/CFS changes people’s ability to perform daily tasks that were previously easy to complete. The illness can last for years and sometimes leads to serious disability. Communicate with patients and show them that you understand and believe them.
Treat symptoms effectively. Helping patients get relief from symptoms and improve their quality of life are the main goals of treatment. Familiarize yourself with the illness using the resources provided on the CDC website, under the Information for Healthcare Providers tab. A new course on ME/CFS can be found at Medscape’s websiteexternal icon.
For pediatric ME/CFS, the fact sheet for healthcare providers can be found on CDC’s ME/CFS website. Please look for upcoming fact sheets for healthcare providers on the website.
What Can Families Do?
Speak up for your Loved One. Take an active role in helping your family member manage their illness. Talk with your family’s healthcare provider about your loved one’s needs and concerns. Educate people involved in your loved one’s life about ME/CFS so that they can better understand when accommodations are needed. If you are a parent of a child living with ME/CFS, speak with your child’s educators and counselors to ask questions, express concerns, and initiate educational support.
Educate yourself. Learn as much as you can about ME/CFS and about how the illness affects your family member. Fatigue, pain, and concentration or memory issues can make it difficult for those living with ME/CFS to participate in daily activities. Children with ME/CFS often cannot attend school. Take advantage of the resources in your community in order to accommodate your child and his or her unique illness.
Socialize. With limited social involvement, those with ME/CFS may feel isolated from their friends and peers. It can be challenging for families to be involved in social events or family activities. Social activities are essential for the well-being of patients and their families.
For more information about ME/CFS in children, the fact sheet for parents and guardians can be found on CDC’s ME/CFS website.
What Can Schools Do?
Understand. Educate staff about ME/CFS in order to empathize with students suffering from the illness. Each child with ME/CFS may experience different symptoms and the duration of their symptoms may differ as well. Take time to understand each student’s individual illness and challenges.
Collaborate. A key to helping students with ME/CFS is to work as a team with their teachers, parents, administrators, other education professionals, and healthcare professionals. This team approach can provide flexibility with educational plans and school resources that are customized to target and reflect the student’s needs.
Accommodate. Because ME/CFS is a complex disorder that affects how students learn and participate in school, teachers and administrators may want to be creative in developing strategies to foster an encouraging learning environment for their students with ME/CFS. Accommodations might include time extension on exams and assignments, scheduled rest periods throughout the school day, combined school and home tutoring, and more.
For more information about ME/CFS in students, the fact sheet for education professionals can be found on CDC’s ME/CFS website.
- CDC ME/CFS Website
- NINDS/CDC Common Data Elements (CDEs) for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)external icon
- Disability and ME/CFS
- CDC’s Public Health Matters Blog: America’s Hidden Health Crisis: Hope for Those Who Suffer from ME/CFS
- NIH Director’s Blog: Moving Toward Answers in ME/CFS, March 2017external icon
- NIH ME/CFS websiteexternal icon
- FDA Voice of the Patientpdf iconexternal icon [PDF – 267KB]
- ME/CFS clinical trialsexternal icon