International Awareness Day for Chronic Immunological and Neurological Diseases

May 12 has been designated as the International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) since 1992. The CIND illnesses include Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), Gulf War Syndrome (GWS), and Multiple Chemical Sensitivity (MCS). May 12 was chosen as the day to bring awareness to these chronic diseases because it was Florence Nightingale’s birthday. Florence Nightingale was one of the most notable figures in history who was thought to have lived with ME/CFS. The importance of bringing awareness to these complex chronic diseases is that they’re often misunderstood. They are considered invisible diseases. Invisible illnesses are where there may not be any visible characteristics of an illness and people who live with these conditions can appear physically healthy but are leading debilitating lives.

This day recognizes a host of diseases that include Fibromyalgia (FM), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia (FM), Gulf War Syndrome (GWS), and Multiple Chemical Sensitivity (MCS). The awareness color for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is blue. Wear a blue ribbon, pin or wristband to recognize International Awareness Day for Chronic Immunological and Neurological Diseases. The color for Fibromyalgia is purple.

International Awareness Day for Chronic Immunological and Neurological Diseases: Living with ME/CFS

ME/CFS creates unique challenges for people living with the illness and for their loved ones. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disabling and complex illness.

People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have overwhelming fatigue that is not improved by rest. ME/CFS may get worse after any activity, whether it’s physical or mental. This symptom is known as post-exertional malaise (PEM). Other symptoms can include problems with sleep, thinking and concentrating, pain, and dizziness. People with ME/CFS may not look ill.

However:

• People with ME/CFS are not able to function the same way they did before they became ill.
• ME/CFS changes people’s ability to do daily tasks, like taking a shower or preparing a meal.
• ME/CFS often makes it hard to keep a job, go to school, and take part in family and social life.
• ME/CFS can last for years and sometimes leads to serious disability.
• At least one in four ME/CFS patients is bed- or house-bound for long periods during their illness.

Who Gets ME/CFS?

Anyone can get ME/CFS. While most common in people between 40 and 60 years old, the illness affects children, adolescents, and adults of all ages. Among adults, women are affected more often than men. White persons are diagnosed more than other races and ethnicities. But many people with ME/CFS have not been diagnosed, especially among people from racial and ethnic minority groups.

As noted in an IOM report:

• An estimated 836,000 to 2.5 million Americans suffer from ME/CFS.
• About 90 percent of people with ME/CFS have not been diagnosed.
• ME/CFS costs the U.S. economy about $17 to $24 billion annually in medical bills and lost income.

Some of the reasons that people with ME/CFS have not been diagnosed include limited access to healthcare and a lack of education about ME/CFS among healthcare providers.

• Most medical schools in the United States do not have ME/CFS as part of their physician training.
• The illness is often misunderstood and might not be taken seriously by some healthcare providers.
• More education for doctors and nurses is urgently needed so they are prepared to provide timely diagnosis and appropriate care for patients.

Causes of ME/CFS

Researchers have not yet found what causes ME/CFS, and there are no specific laboratory tests to diagnose ME/CFS directly. Therefore, doctors need to consider the diagnosis of ME/CFS based on in-depth evaluation of a person’s symptoms and medical history. It is also important that doctors diagnose and treat any other conditions that can cause similar symptoms. Even though there is no cure for ME/CFS, some symptoms can be treated or managed.