Since 1992 12th May has been recognised as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) International Awareness Day. On this important day, organisations and individuals recognise and support the millions of people world-wide who are affected by ME/CFS and other chronic immunological and neurologic diseases by raising public awareness. In fact, 12th May is International Awareness Day for Chronic Immunological and Neurological Diseases (CIND). The CIND illnesses include Myalgic Encephalomyelitis (M.E.), Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), Gulf War Syndrome (GWS) and Multiple Chemical Sensitivity (MCS).
Two US states have legislated this year to mark the date.
The New York State Senate has passed a resolution marking “the 33rd Anniversary of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day in the State of New York”. The resolution narrates why marking 12th May is so important –
- In 2018, it was reported 1 to 2.5 million Americans of all ages, races and genders are living with ME/CFS, and approximately 62,000 -152,000 people in New York;
- Myalgic Encephalomyelitis persists for years or decades due to a lack of treatments, leaving 25% of patients housebound or bed-bound, with many students unable to attend school and 75%-85% of patients unable to work, costing the economy of New York State millions of dollars;
- The National Academy of Medicine noted a lack of knowledge about the disease due to a lack of research and funding for research, owing largely to a lack of awareness of the disease;
- The National Academy of Medicine stated that as a result of this lack of awareness and research, many patients encounter medical professionals who doubt the existence of their disease and have
- tremendous difficulty being properly diagnosed and accessing appropriate medical care; and
- ME/CFS is a tragic, disabling disease which destroys the lives of many patients and imposes a severe toll on their families, friends, and caretakers;
In addition, the State of Alaska has passed “An Act establishing May 12 as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Day of Recognition” and that 12th May may be observed by suitable observances and exercises by civic groups and the public.
Undoubtedly other states will also pass legislation to mark the most important date in the ME calendar.
