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Johns Hopkins Research Update

A Patient’s Personal Account of the Effects of Being Treated for Neurally Mediated Hypotension and its Connection to Chronic Fatigue Syndrome

I am one of the few people with Chronic Fatigue Syndrome who did not have to endure the grueling indoctrination of a very lengthy diagnostic process. I was lucky enough to have access to the best of medical technology and a wonderful medical team. The physician I have been seeing is very knowledgeable about the latest developments in CFS research and treatments.

My diagnosis by elimination went very rapidly and the six month waiting period was a formality. I have truly felt that I had my own dream team working on my behalf. That team does not consist merely of the physicians directly involved in my medical care—it has included a host of others, including researchers, government officials, advocates and fellow patients.

As was pointed out by a patient survival years ago, it’s not easy being a substitute for an animal model. Although I am very willing to do so, I had not realized that a CFS diagnosis meant donating my body to research before I die rather than after.

In the more than six years that I have had CFS, I have taken part in many studies been prescribed dozens of medications to treat the symptoms. None have helped and many caused negative reactions. I have tried to remain as active as possible and refuse to give in to the illness. If a subject was needed for any kind of study, I was willing to take part. It wasn’t a gallant gesture on my part—I just felt it was the best way I could contribute to possibly finding a healthier future for myself and others affected by CFS. Despite the best efforts of my physicians, nothing helped.

In October I attended the AACFS conference in Florida, but the effort pushed me over the edge. For the next five months I was homebound most of the time. On the best of days, I did not feel cognitively clear enough or strong enough to travel more than a few blocks from my house. In those five months I was only able to leave the house about a dozen times. I was unable to participate in most family activities or even most meals. During the day, I was alone and often remained in one room, going without lunch because I was too exhausted, sick and weak to prepare it for myself.

I was unable to read to my seven-year old daughter most of the time. I had to give up my writing and artwork, even though these were the activities that most sustained me emotionally. I had to hire someone to get my daughter to school and to take care of her on evenings when my wife was not home. My overall condition was spiraling downhill. Scaling a single flight of stairs necessitated using the hand rail and taking one step at a time.

That was when I heard about the work being done at Johns Hopkins Hospital on neurally mediated hypotension. It seemed to be a new approach so I went down with hope, but no preconception of what to expect. I had too little energy to expend it on indulging in unqualified scientific speculation—I would leave the research and speculation to the experts.

I tested positive in a tilt-table test and immediately began treatment for neurally mediated hypotension, which for me included Florinef, increased salt in my food (about 3000 mg a day) and drinking at least two liters of water per day. Nothing happened week after week. Finally it was decided to increase the daily medication dose. Three days later I was supposed to take a cab 23 miles into Boston for a medical treatment. Within 48 hours of increasing the dose, I felt so much better I actually was aware of feeling good for the first time in almost six years.

The following day I drove into Boston, took myself out for lunch and did not feel the need to nap when I got home. Better yet, there was no payback. As days passed, I found I was enjoying them more, was having to nap less and was able to get back to my writing and artwork. That same week the phone rang and as I picked up the receiver I was stunned— I had just run up two flights of stairs to get it. That’s something I hadn’t done since I became ill in 1988. Over the next few weeks I started getting out more often, was able to participate in more family activities and even joined them in going to see a Globe Trotters game 25 miles from home. Two days later we went out to a play.

At least to me a far more significant improvement was when my daughter asked me to play Concentration with her. Usually that meant I would match a pair or two and she would have a lesson in being a humble winner. This time she hardly got a turn. I kept matching pair after pair. My memory seemed to be functioning better than it had in years. I was stunned by what was happening. Her beautiful little seven-year-old eyes sparkled and she grinned from ear to ear as she joyfully said, “Oh Daddy, you are getting better!”

The milestones kept coming. I no longer take naps during the day and I get out every day. One evening while getting take-out food I realized that we didn’t have enough money, but that there was an ATM across the street. I took my daughter’s hand and we ran across a parking lot, a small green, the two-lane intersection, and then skipped across a 50-yard parking lot. Those same sparking seven-year-old eyes looked up at me with exhilaration as she beamed, “Daddy, you’ve never run with me before.”

I can’t actually place a percentage on my improvement because it’s too subjective. It’s been so long since I was healthy that I honestly can’t remember quite what it feels like. I’m by no means completely well, but I’m aware of feeling “good” now and that’s a huge improvement. The tired feelings I get now are just that—a well-deserved tired feeling rather than the crushing exhaustion of CFS. I’m walking over a mile once or twice a week. The progress seems to be gradual, but continuous.

I took my wife and daughter to see a play that was written partly about my family. The play was George Kaufman’s “You Can’t Take it With You.” There’s a line in it that has been the standard opening line for our family gatherings. It seems very apropos considering how much better I feel and how significantly I have been delivered back into the human race. That line is, “Well sir, here we are again.” The closing line is, “As for the rest, sir, I guess it’s up to you.” For everyone who is directly or indirectly affected by CFS, I hope the research will continue and many will benefit from the door that has been opened by the doctors at Johns Hopkins Hospital.