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 on this web page 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). The names of some contributors have been changed to protect their privacy.