May 12 is the International Awareness Day for Chronic Immunological and Neurological Diseases (CIND). These conditions include Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), and Fibromyalgia. This day coincides with the birthday of Florence Nightingale, founder of modern nursing. Although ME/CFS was not defined in her lifetime, many historians believe she developed an ME/CFS-like illness. She became chronically ill and was often bedridden later in life.
What Are These Conditions?
ME/CFS is characterized by substantial disability that affects daily activities and is accompanied by profound fatigue that is not relieved by rest. While varying by person and affecting many body systems, symptoms include severe fatigue, unrefreshing sleep, lightheadedness, dizziness, problems thinking and concentrating, pain, and worsened memory. Post-exertional malaise (PEM), a distinguishing feature of the illness, is the worsening of symptoms after physical or mental activity.
Although more common in women, ME/CFS affects people of all ages, including children, and people of all races and ethnicities. In December 2023, CDC released a new national estimate of how many people in the U.S. have ME/CFS. Data showed 1.3% of adults, or about 3.3 million people, currently had ME/CFS.
Fibromyalgia is a condition that causes pain all over the body, as well as sleep problems, fatigue, and emotional and mental distress. People with fibromyalgia may be more sensitive to pain than people without fibromyalgia. This is called abnormal pain perception processing. Fibromyalgia affects about 4 million US adults, about 2% of the adult population. The cause of fibromyalgia is not known, but it can be effectively treated and managed.
There are characteristics that have been linked to fibromyalgia, but more research is needed to confirm these relationships. Women are twice as likely to have fibromyalgia as men. Stressful or traumatic events, such as adverse childhood experiences, car accidents, or post-traumatic stress disorder (PTSD) can increase risk. Repetitive injury and family history can also be causes.
Spoiler alert for the upcoming PTSD Awareness Day! My doctors determined the cause of my fibromyalgia to be long-term nerve stress and damage, which was caused by PTSD from a traumatic event. More on that later!
Why an Awareness Day?
Having a shared awareness day for these similar conditions allows organizations supporting people with various CINDs to combine efforts for greater impact. This increases public awareness of the challenges faced by those living with Chronic Immunological and Neurological Diseases like fibromyalgia.
Many celebrities have contributed to awareness about these conditions. Lady Gaga has revealed that she struggles with fibromyalgia and has spoken about how the condition can make it difficult to perform. Stevie Nicks of Fleetwood Mac has spoken about her struggles with CFS since the 1980s. She has described the fatigue as feeling like “someone put a big wet blanket over me.”
Sources and Further Reading:
- National Institutes of Health (NIH): May 12 is ME/CFS and Fibromyalgia International Awareness Day
- Centers for Disease Control and Prevention (CDC): ME/CFS International Awareness Day
- Centers for Disease Control and Prevention (CDC): Arthritis > Fibromyalgia
- National Fibromyalgia Association: 2024 Awareness Day
- May12th.org: International Awareness Day for Chronic Immunological and Neurological Diseases (CIND)