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Faces of CFS - Case Histories of Chronic Fatigue Syndrome
by David S. Bell, MD, FAAP
Lyndonville, New York, August 15, 2000
Chapter 9 "Andrea's Revolver", pages 71-75
I began to learn about the relationship between CFS and another puzzling condition called orthostatic hypotension, a failure of the body to adequately pump blood while standing in the upright position, from Dr. Peter Rowe and colleagues at Johns Hopkins. Soon afterward I began working with Dr. David Streeten, an endocrinologist who had worked extensively with "orthostatic intolerance", the inability of the body to tolerate the upright position. There are only a few truly great doctors who stand out from the thousands of ordinary ones; they are the true masters of medicine. David Streeten is one of these masters. He has both a brilliant scientific mind and the perception and intuition of a superb clinician. If I were thirty years younger and fresh from medical school, I would become his intern and really learn medicine. But working with a master has its drawbacks. When I send my CFS patients to see him for a consultation, they return to my clinic with the news that he was much nicer to them than I ever was.
I met Dr. Streeten for the first time in February 1994 when I accompanied Andrea Thompson to his offices in order to observe his evaluation of her first hand. Until this experience, I was under the mistaken perception that I understood CFS. Dr. Streeten proceeded to teach me some of the basics that I had overlooked for fifteen years. I had always viewed chronic fatigue as the result of the chemicals released by a viral infection, and had concentrated solely upon looking for the infection that might have caused the condition. Now I was seeing what could be the mechanism, regardless of cause, which might be causing the symptoms to persist. The myriad of symptoms revolving around exhaustion, weakness, lightheadedness, and inability to concentrate were likely due to the inability of the body to circulate blood to the brain when standing, or sometimes even sitting. When the CFS patient is lying down, the symptoms are improved, although not gone entirely. The disability of CFS has to do with the fact that we spend our non-sleeping lives in the upright position.
Dr. Streeten utilized MAST trousers in his experiments. The acronym stands for military anti-shock trousers. These inflatable pants can be blown up like an inner tube in order to create a veritable body cast from the toes all the way to the mid-chest. When paramedics need to transfer trauma patients suffering from fractured legs, MAST trousers are very handy because they become an instant cast and compress the lower body. Dr. Streeten performed a deceptively simple experiment with his patients. He bid them don deflated MAST trousers, then asked them to stand next to a wall of his examining room. As they stood upright in these somewhat peculiar circumstances, he monitored the patient's blood pressure and pulse. When the CFS patient would become ill during standing, he would inflate their MAST trousers.
Upon meeting Andrea, Dr. Streeten measured the amount of blood circulating in Andrea's body and discovered that the level was strikingly low. Next, he tested Andrea's blood pressure and pulse for ten minutes while lying down, and they were normal. Blood tests drawn at that time for adrenaline and other "catecholamines" were drawn and later shown to be normal. Then Andrea stood quietly with the plastic MAST trousers around her body but not inflated. Then the problems began. Within minutes she began to feel ill, her pulse began to climb, and the pain began to grow. By ten minutes of standing her speech was slurred and she appeared a little drunk, swaying back and forth and her feet began to look purple. Her blood pressure dropped and heart rate increased. Then the pain really kicked in. She was confused. All she could do was to say over and over, "The pain ... the pain..." While still standing, a second sample of blood was drawn from the line in her arm, again tested for adrenaline.
At that point, while Andrea was still standing, Dr. Streeten inflated the MAST trousers, causing symmetrical pressure around her legs, thighs and abdomen. I had often seen Andrea in this state before, a state where she looked as if she had been on a binge for days. But my teeth nearly fell out seven seconds later she straightened up and looked around and said with a clear voice, "What happened? The pain is gone."
I was as astonished as Andrea. Even Dr. Streeten was surprised by the magnitude of this response. He hypothesized that the pressure on Andrea's legs and abdomen by the MAST trousers had forced a more vigorous blood flow through Andrea's brain, and that this increased blood flow stopped the pain. Andrea wanted to buy a pair of MAST trousers for home use. (Later on we actually tried this, but it turns out to be impossible to walk around with these things on which sort of cancels out the purpose.)
Dr. Streeten was suitably impressed by Andrea's case. He submitted his MAST trouser experiment on Andrea and about twenty other CFS patients to a scientific journal. The editors rejected the paper, initially, because the patients were not sufficiently "blinded" in this experiment. In the world of science, of course, it is optimum for patients in experiments to be ignorant of the researcher's modus operandi. My question to the journal editors is this: how could we sneak Andrea into a pair of MAST trousers without her finding out about it? I can think of only one way: render her unconscious with a general anesthetic. The problem with that, of course, is that it is very difficult for people to describe their pain, or lack of it, while unconscious. Sometimes modern medicine is bewildering.
The temporary stoppage of Andrea's pain in Dr. Streeten's office that day offers up no simple explanations or conclusions, just theories. One simplistic theory is that because Andrea had too little blood circulating in her body, her blood pressure dropped dramatically when she was forced to stand for any length of time. When her blood pressure dropped, so did the flow of blood to her brain, which houses the mechanism that mediates both the sensation of pain and blood flow: the autonomic nervous system. By inflating Andrea's MAST trousers, Streeten was able to rescue, so to speak, blood that was trapped in her legs, and send more to her brain.
Still, the theory has by no means been proven. In the time that has elapsed since Andrea's visit with Dr. Streeten, however, it has become apparent to me and to other doctors who study CFS that problems with blood flow to the brain, and the regulator of that flow - the autonomic nervous system - is responsible for both the exhaustion and the migrating pain of the disease. Of course, myriad questions remain. Might the cause of pain in CFS be a result of a decreased blood flow through the thalamus? Is there an inherent abnormality of the blood vessels that causes the decreased blood flow through the brain?
A different theory of CFS pain centers on hormones. Studies have demonstrated that a number of different hormones are in insufficient supply in CFS patients. One of these is called growth hormone. The pituitary gland of the brain produces this particular hormone, and besides its primary job of making children grow, it has numerous functions in the body.
Scientists have discovered that there is also a second hormone, called vasopressin, that is deficient in CFS patients. This hormone is essential to regulate the concentration of water in the body, as well as to regulate the size, or diameter, of the blood vessels.
I had already determined that Andrea had levels of vasopressin that were much too low to be considered normal. A deficiency of vasopressin could predictably cause excessive thirst as well an insufficient supply of circulating blood in the body. As things have turned out, many patients with CFS experience both of these problems.
And this is where the trail leads us to endorphins, hormones produced by healthy people that act as the natural pain killers for the body. Interestingly, vasopressin is a substance that reflects the production of the natural pain-killing endorphins. Could it be that CFS patients have low levels of the endorphins, explaining in part, why they experience so much pain? The fact remains: regardless of why it exists, or what causes it, pain that is both intense and chronic is a daily fact of life for a great many patients who suffer from CFS.
I began testing CFS patients in my office for changes in pulse and blood pressure when they stand quietly, and found that the vast majority have abnormalities. This is the reason that people with CFS may look healthy to outsiders, but they are unable to stand at the check-out counter of the grocery store. In fact, on occasion, some of them faint, or come very close to fainting, presumably because they cannot maintain good blood flow to the brain.
Note from page 4 - The author has changed names or used composite characters to illustrate the defining principles of CFS.
David S. Bell, MD, FAAP, is a primary care physician in pediatrics and family practice in Lyndonville, New York. Dr. Bell is the author of CFIDS, The Disease of a Thousand Names (1991), The Doctor's Guide to Chronic Fatigue Syndrome (1994), and A Parents' Guide to CFIDS How to Be an Advocate for Your Child with Chronic Fatigue Immune Dysfunction Syndrome (1999).
Copyright © David S. Bell MD, 2000
Posted with permission from the author.
Also, see Orthostatic Intolerance Test and Orthostatic Intolerance Test Results for more details about the test and the 5 types of Orthostatic Intolerance. For more articles and books by Dr. David S. Bell, please visit the Links page.
Note: Dr. David H. Streeten died September of 2000. His research and understanding of Orthostatic Intolerance (OI) will always be greatly appreciated.
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