What is CFIDS?
  What is CFIDS in Youth?
  Articles & Information
  Other Resources

Neurally Mediated Hypotension and CFS
An Interview with Johns Hopkins University's Dr. Peter Rowe

By Rebecca C. Moore

Originally published in Youth Allied By CFIDS, Fall 1995

Dr. Peter Rowe is a pediatrician and associate professor of pediatrics at Johns Hopkins University. He and his colleagues in the departments of pediatrics and cardiology have been studying adolescents with chronic fatigue syndrome (CFS) and neurally mediated hypotension (NMH). NMH (also called vasodepressor syncope or neurocardiogenic syncope) is a blood pressure abnormality brought on by a nervous system reflex. It can cause symptoms such as chronic fatigue, light-headedness, recurrent fainting, malaise, nausea, exercise intolerance and cognitive dysfunction. Dr. Rowe and his colleagues at JHU have linked chronic fatigue syndrome and NMH through their clinical observations and through tilt table testing. Their paper, "Is neurally mediated hypotension an unrecognized cause of chronic fatigue?," was published in Lancet in March 1995. For more information on NMH, see:


Q: What is your position at JHU?

A : I run the diagnostic referral clinic in the department of pediatrics. We evaluate children who do not have a clear diagnosis and whose problems don't fit into any one classical subspecialty.


Q: What led you to study this population and your conclusions?

A: There were two groups of patients that helped stimulate my thinking about this problem. One was a group of children, mostly adolescents, who had recurrent episodes of fainting or near fainting. By talking to Drs. Kan and Calkins (my colleagues at JHU in pediatric and adult cardiology), I learned a great deal about neurally mediated hypotension (NMH). NMH has been known about for a long, long time. There was a classic paper about it in 1932 in which, interestingly enough, people who fainted had prolonged periods of fatigue after they fainted. But that observation was largely ignored.

About 10 years ago, cardiologists discovered that by using a tilt table test they could reproduce the abnormality that caused these people to faint. So, instead of being told that they just had to put up with their symptoms, people with recurrent fainting were diagnosed with NMH and started treatment.

As I was looking at the children with recurrent fainting, I was also seeing adolescents with chronic fatigue and chronic fatigue syndrome. It looked to me like these two groups (NMH and CF/CFS) had a lot in common. We observed that the kids with chronic fatigue and post-exertional fatigue also had cognitive problems and were coming close to syncope, or fainting, but were mainly just light-headed. Because of these similarities, we decided to do tilt table tests on them and found that they all had profound abnormalities in the regulation of blood pressure. This was a surprise and a new finding.


Q: Every single one had these abnormalities?

A: Yes. We studied 12 of them in a row. Five of them had one or more prior episodes of fainting, and all five of them, as might be expected, had abnormal tilt table tests. The seven whom we wrote about in the Lancet paper had no evidence of previous syncope. They simply had lightheadedness, chronic fatigue and worsening of their fatigue after exertion. And, all seven of them had abnormal tilt tests.


Q: Can youth pursue this testing and treatment now in most areas of the country?

A: Yes. Fortunately, the tilt table test is something that most cardiologists who have trained recently have some experience with. And, all cardiologists who are electrophysiologists (specialists in heart rhythm abnormalities) can usually perform the test.

I would be very concerned about folks who don't have cardiology training buying tilt tables and testing people. This test, in the hands of people who are experienced, is quite safe. But one of the reactions to being in an upright position, if you have an impressive test, can be that the heart will stop for a brief period of time. We've seen it stop for up to 12 seconds. It always restarts, but it restarts because we put the table down flat. I would be worried if people were unattended or poorly monitored in a tilt test. And, I think that would only occur when tilt tests were being done by people with no training.


Q: In the youth with CFIDS that you tested, what symptoms were most commonly present when their blood pressure dropped?

A: As the tilt table went up, they could maintain their blood pressure for a period of time, but during that time they became gradually more symptomatic. Then their blood pressure tended to drop very precipitously, and at that point they had a worsening of all of their symptoms. The test was stopped if they really couldn't tolerate it any further or if they fainted.


Q: Which symptoms are most commonly helped by treatment of NMH?

A: In our patients in the Lancet study, when we found an effective therapy, all of their symptoms were improved, namely lightheadedness, fatigue, post-exertional fatigue and cognitive dysfunction. A number who came in complaining of aches and pains in their muscles and joints had a resolution of those aches and pains. When we found an effective treatment for their recurrent lightheadedness, it seemed that all of the other symptoms that people have associated with CFS also disappeared. And that has made us hypothesize that this blood pressure reflex is responsible for most, if not all, of the CFS symptoms.


Q: Do you think that the adolescents you studied had NMH all of their lives?

A: No. A number of them had their symptoms begin suddenly after what seemed to be a viral infection. Now, there are others who, in addition to having a definite onset, had a history of fainting once or twice before the infectious illness. They often were more tired than their peers. People thought of them as lazy. Those kinds of symptoms are occasionally present in the background history of some individuals, but for many, some apparent infectious disease seemed to be associated with the worsening of symptoms.


Q: Were adolescents more likely to get this after puberty?

A Yes, girls getting NMH as soon as they start to menstruate is something that I've seen time and time again. In addition to that, there's often a worsening of fatigue in the day or two prior to the onset of the period, at a time when we think blood volume is probably being affected by hormones. This worsening of symptoms at puberty hasn't been anywhere near as dramatic in male adolescent patients, in part, because there are so many more females than males with this problem.


Q: In speaking with other YPWCs, I have found that most are curious about how severely disabled these adolescents were before they were treated.

A: Well, let me give you an example of one of them who really has had a profound impact on our thinking. I saw this girl in the spring, about a year after her symptoms started. She got a little bit better in the summertime, but as soon as school started, her symptoms returned. By November she was falling asleep in class, unable to concentrate and had to read the same paragraph over 10 times just for it to sink in. She couldn't walk more than 10 minutes without getting exhausted, couldn't do any social activities and was home most of the time. She had to [go on home teaching] and her relationships with her friends suffered. Her physicians told her she was depressed and that she needed to get herself back in the swing of things. But her aunt, who is a pediatrician, was convinced that this girl had had a major physical change for which she wasn't to blame.


Q: How did her symptoms change once she began treatment?

A: We put her on a beta blocker and within a week she had an improvement in lightheadedness and fatigue, and she was able to do more things, like riding her bike a mile to her friend's house. About two weeks into treatment, she told us it was as if a fog had lifted from her brain; she was able to read things properly.

By this time it was the beginning of May, and the school decided that she ought to remain on home teaching in case her symptoms returned. But instead of always being behind in her schoolwork, she caught up, exceeded the reading load of the course and finished the year. This past year (when she was on treatment) she was able to go to school and she danced until five in the morning at her high school senior prom. She's got an active, normal adolescent social life.

Now, she's not without symptoms and if she skips her medications her symptoms come back, but she is able to cope with them much better. There's a bit of a roller coaster still, but it's much more manageable than before treatment.


Q: What did you learn about CFIDS that you wish you had known sooner?

A: I think the thing that I learned the most is how difficult the cognitive dysfunction is for people, how much it bothers people who start off as bright, intelligent folks.

It was important to learn about the various symptoms of CFS. In medical school, students are told if patients come in with more than four or five complaints, they should assume that those people have psychiatric or psychosomatic disease. That notion has to be exploded because of the fact that NMH and CFIDS have a tremendous number of symptoms, but they are all connected.


* These articles are available from The CFIDS Association of America. Please call 704/365-2343 for pricing and more information.