March is Chronic Fatigue Syndrome Awareness Month.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and complex illness.
According to the Centers for Disease Control and Prevention (CDC), 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.
One Patient’s ME/CFS Journey
The following is Andrew’s story about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), courtesy of the CDC.
“I am a physician and had not heard of ME/CFS before I got it. I can’t tell you the specific day in August 1986 but many people with abrupt onset can. I didn’t know what hit me – it was awful. It was like a severe flu. In addition, I could not tolerate loud sounds, bright lights, and my large leg muscles felt like jelly. I had no energy, no stability, and started to have sleep problems.
The symptoms did not go away after a few weeks so I went to an internist who I did not know. He sent me to a “shrink.” I saw a few internists and one psychiatrist who all said I was anxious and depressed. I felt demeaned by the doctors I saw.
After about a year of my symptoms during which I had to reduce my practice, a friend recommended a clinician at a medical school in Massachusetts who was familiar with ME/CFS. That is when I received my diagnosis. Just knowing that I had something that was recognizable and that other people had the same thing was a relief. After about 6 months from receiving the diagnosis, I began to feel better and my brain began to function better.
During this time I was still in medical practice seeing patients. I learned that I had to cut down on my practice hours in order to manage my own illness better and I never again was able to practice full time. I learned that post-exertional malaise (PEM) required me to pace myself. I would see patients for 3 hours in the morning and then rest, and see patients again for 3 hours in the afternoon.
What do I want people to know about this illness? I think there is a spectrum of ME/CFS. I have read that some people (25%) have a very severe form and are bed-bound or house-bound, but more people (75%) may have a mild to moderate form of it. Some of us with a less severe form of ME/CFS can still work and participate in selected activities. One needs to learn to live with ME/CFS. Pacing is essential – you have to take stock of yourself and recognize patterns. You have to see what makes things worse and what helps.
I am lucky because my family was mostly supportive but some friends and colleagues were skeptical. Some people wanted more proof. I feel badly for the people who do not have family support and it is ridiculous that people with ME/CFS are thought to be crazy.
Those of us that have had ME/CFS for a long time remember that the attitude among healthcare providers used to be belittling and ignorant. Thankfully, the attitude is shifting a bit but we still have much work to do. I would tell healthcare providers that making a diagnosis is not difficult. A proper medical history is very important but it takes time. It is impossible to make a diagnosis in just 15 or 30 minutes. Most important is to look at the level of function before and after the illness began.”
[Disclaimer: The opinions and conclusions stated above are those of the patients and other contributors, and do not necessarily represent the official position of the Centers for Disease Control and Prevention (CDC), which originally published this content. The names of some contributors have been changed to protect their privacy.]
More About ME/CFS
- 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.
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 people are diagnosed more than other races and ethnicities. But many people with ME/CFS have not been diagnosed, especially among minorities.
As noted in the Institute of Medicine 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 incomes.
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.
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.
