Today is ME Awareness Day…What is ME Awareness Day?

May 12th is designated as the International ME Awareness Day to raise awareness and improve understanding of Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). ME/CFS is a chronic and debilitating illness that affects over 17 million people worldwide, according to estimates by the World Health Organization.

ME/CFS is a complex illness that affects many systems in the body, including the immune, neurological, digestive, and energy production systems. Symptoms can range from flu-like symptoms to persistent exhaustion, chronic pain, cognitive impairment, and sensitivity to light and sound. The severity and duration of symptoms varies widely between individuals, and the disease can be unpredictable and disabling. Many people with ME/CFS are unable to work, attend school, or maintain normal social activities due to their symptoms.

The lack of awareness and understanding of ME/CFS among healthcare professionals, policymakers, and the general public, has contributed to inadequate research funding, misdiagnosis, and stigmatization of patients. ME Awareness Day aims to change this by providing a platform for patients, advocates, and organizations to raise awareness, share information, and advocate for better treatments and policies for people with ME/CFS.

History and significance of ME Awareness Day

The first ME Awareness Day was held on May 12, 1992, coinciding with the birthday of Florence Nightingale, the founder of modern nursing who also suffered from a mysterious illness that is believed to have been ME/CFS. The date has been chosen to mark the beginning of a significant outbreak of ME in the United States in 1984 that affected over 200 people in nine states. The outbreak received national attention and sparked interest in researching the illness.

Since then, ME Awareness Day has grown into a global event, with organizations and individuals around the world organizing events, campaigns, and social media activities to raise awareness and promote understanding of ME/CFS. The day is observed in many countries, including the United States, Canada, the United Kingdom, Australia, and New Zealand.

ME Awareness Day is an important opportunity to bring attention to the experiences of people with ME/CFS and highlight the urgent need for more research, better treatments, and improved social policies. By sharing their stories and raising awareness, patients and advocates hope to reduce stigma and improve the quality of life for those affected by this disabling illness.

How you can get involved

There are many ways to get involved in ME Awareness Day and show your support for people with ME/CFS. Here are some ideas:

• Join a local or online ME/CFS advocacy group and participate in their activities and events.
• Spread awareness on social media by sharing information and using the hashtags #MillionsMissing and #MAY12th.
• Organize or participate in a local event, such as a walk, rally, or educational seminar.
• Donate to organizations that support ME/CFS research and advocacy, such as the Solve ME/CFS Initiative, ME Association, or Open Medicine Foundation.
• Educate yourself and others about the realities of ME/CFS and the challenges faced by patients and their families.

By taking action and getting involved in ME Awareness Day, we can help to improve the lives of people with ME/CFS and work towards finding a cure for this complex and debilitating illness.