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Voice of the Patient

Andrew’s Story

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.

man sitting on dock looking out into the water

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.

Ann’s Story

stairs in the woods going up to the sun

Right before I got sick, I was an international athlete and was going to graduate school. I was used to being busy and my body was reliable. I distinctly remember when I first became ill. There was an ice storm in my town and it shut down the power in my house. The crawl space became flooded and we spent many hours bailing out the water. The next day I woke up with the worst sore throat and felt sick overall, but I just kept going, thinking I would get better the next day. I developed bad vertigo, and also had fatigue and sleep problems.

I went to the school health clinic and had a lot of tests done. All my tests came back fine— only months later I was found to have mononucleosis. Over the next two and a half years I had mono two more times, and each time it took months to recover. I kept going to doctors and specialists such as infectious disease doctors, cardiologists, and rheumatologists. It was grueling to go through this process and some of the doctors didn’t want to see me because there was nothing they could say or do. Finally, three years from my original illness, I traveled out of state to see a specialist and he diagnosed me with ME/CFS. I continued to see him once a year until I found someone local who wanted to be my doctor and work with me.

My illness put a stop to my busy life. The fact of not being able to do things I used to do contributed to a dark time in my life and it was isolating too. I would think, “do I lie on the couch?” or “should I try to make something to eat?” And it was hard on my family. My husband would tell you that he felt horrible for me, but at the same time, his needs were not being met and he was grieving. ME/CFS can create a wedge in a marriage.

Once I got diagnosed and started treatments my symptoms began to improve, but it still took me another few years to learn to manage my illness. There was one big event [first time I got sick] and now my illness is cyclical. I look at my ME/CFS in phases. The “crisis” phase is when my body does not function properly. Energy is running the wrong way and I need to be as still as possible. I can’t move because I need to conserve my energy. The “emerging” phase is when I come out of crisis and any energy I expend needs to be on something that gives back to me. For example, I might take a shower rather than do house cleaning, then I need to lie down. Next is the “stabilization” phase in which I can do some things but I need to be very cautious about any overexertion. Then is the “integration” phase, when I can begin to slowly build my strength back. My symptoms change over time and I have learned to be aware of my body and ask each day “how do I feel?”

Although everyone’s experience with ME/CFS is different, for me, this kind of careful management has been essential to helping me complete my graduate program, work part-time in a career I love, and start a family. ME/CFS has taken so much from me, but it also forced me to get really clear about what matters most in my life, and taught me how to let go of the rest. And, most importantly, it has helped me find a sense of self-worth, beauty, and meaning beyond my physical capabilities.

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.