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"No Other Illness Like This One": Dr. Bell Finds Dramatic Abnormalities in CFIDS - Part 1 of 2
by Joan S. Livingston
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CFIDS [Chronic Fatigue and Immune Dysfunction Syndrome] sufferers can celebrate yet more concrete evidence that what they suffer from is not "all in your head (AIYH)," but rather "all in your body (AIYB)"-but given the nature of the evidence, they'll probably want to celebrate in bed. The findings come from a new study by Dr. David S. Bell of Lyndonville, NY. Lyndonville was the site of a major CFIDS cluster epidemic in the 1980s that morphed Bell from a rural pediatrician into a world-renowned CFIDS researcher as he sought to understand what was happening to his patients.
Bell's last major study, with endocrinologist Dr. David Streeten, yielded a startling discovery: that the vast majority of Bell's CFIDS patients had "extraordinarily" low circulating blood volume (a combination of plasma and the red blood cells via which the plasma delivers oxygen throughout the body). While his average patients ran about 70 percent of normal, several patients with chronic fatigue syndrome (PWCs) had only half the blood volume of a healthy person, an amount so low that it would ordinarily cause shock and prove fatal in a car accident (as apparently happened to Princess Diana during a 2 1/2-hour drive to a French hospital).
Bell hypothesized that the low blood volume could help account for the prevalence of orthostatic intolerance (worsened symptoms upon standing) in CFIDS, because the limited amount of blood tended to pool in the legs and feet, with a corresponding drop in the amount available to the brain. The result? That common sensation of overwhelming gravity and of wearing lead boots. Other research has added to the mounting evidence that this is a core problem in CFIDS, including reduced cerebral blood flow on SPECT [single photon emission computed tomography] scans and neurally mediated hypotension on tilt-table tests.
Data for Diagnosis and Disability
Dr. Bell has completed further research on some specific physical ramifications of low circulating blood volume. He and Streeten conducted tests on Bell's patients by tracking their blood pressure and pulse while lying and then standing. Consistent with Bell's long-held assumptions, virtually all of his patients (18 or 19 of 20) exhibited aberrations when upright. This is hard data that could be helpful in diagnosis and ultimately treatment, that generally correlates with disease severity, and that could prove very valuable in fighting for disability benefits.
The new findings could be pivotal in bucking conventional notions of CFIDS as a disease of subjective, "self-reported," and possibly overstated symptoms. No physician or Social Security judge can reasonably stick a psychiatric or hypochondriac label on a patient with some of the abnormalities outlined below.
ABOUT "FATIGUE"
In a disease whose formal name is chronic fatigue syndrome, it's noteworthy that Bell shuns the word "fatigue" as a "very inappropriate term for what patients experience. It's not really fatigue at all, which is defined as a normal recovery state from exertion, and that is precisely what does NOT happen in this illness Anybody who works a 20-hour day will be fatigued, but they'll recover from it-it's not the same thing. A typical CFS patient might function on a minimal level (housework, minor errands) for a total of 3 or 4 hours a day. They may say they're fatigued, but what's really restricting their activity may be pain, tremulousness, or weakness-a sense that they are on the verge of collapse. That is not 'fatigue' as we commonly think of it."
As background to his most recent findings, Bell shared his observations about the wealth of already existing data on physical anomalies in CFIDS for those clinicians who have been willing to look and do more than a rote physical exam and a standard blood count. "The abnormalities in this illness are numerous and quite striking," Dr. Bell observed. Even before the last few years' research began pinpointing increasingly more aberrations in virtually every body system, he says, "I was always quite annoyed when doctors would say you can't find anything wrong on laboratory evaluation or physical exam. It's just not true. Among other things, the immunological findings are very, very interesting." Sleep-lab studies and tests of cognition are generally quite unusual, he noted, if performed properly.
"It's always been said that this is an illness of exclusion, that everything else must be ruled out before the diagnosis of chronic fatigue syndrome can be made," Bell noted. "That is not true. The pattern of symptoms is unique; there is no other illness in general medical practice that looks like this one. When doctors say that the physical exam is normal, that's also inaccurate," Bell continued. "Virtually all patients will have abnormalities on physical exam, but on average the patient will look pretty healthy. What the doctor is thinking is that the physical exam is not abnormal enough to explain why someone says they can be up only two hours a day. The degree of reported activity restriction is so dramatic physicians frequently just don't believe it's possible."
But understanding low blood volume and severe orthostatic intolerance makes the degree of activity restriction more than "possible." In fact, it makes it hard to believe patients function as well as they do because, as the data below suggest, many PWCs may function in a continuous state of hypotension, tachycardia, and/or other posture-related abnormalities, including circulatory shock.
One Possible Etiology: The ANS Gone MIA
Dr. Bell noted that one theory of CFIDS etiology receiving increasing attention is autonomic nervous system injury or dysfunction. Consisting of the parasympathetic and sympathetic nervous systems, the autonomic nervous system or ANS is responsible for controlling involuntary bodily functions like breathing, pulse, and blood pressure, as well as the adrenal and other glands, among dozens of other functions. It's the reason you keep breathing and your heart keeps pumping while you're asleep, as well as why your system goes into overdrive and why you sweat more when you're nervous. The ANS is the home of orthostatic problems, and of many chemicals, that may explain a range of CFIDS symptoms.
A clear majority of the patients in Bell and Streeten's first study had a "marked, striking" decrease in circulating blood volume. "One nice thing about that finding," Bell said wryly, "is that it is a discrete physiological abnormality that cannot possibly be explained as psychosomatic." How severe were the irregularities? The percentages varied (70% of normal volume was average); still, "we have six people with only 50% of normal blood volume here who're still walking around. It seems to be a different mechanism than what happens to a healthy person [who loses that much blood] in a car accident."
For some reason, the blood vessels in CFIDS seem to be constricted dramatically, and attempts to restore normal volume (through fluids, Florinef, salt, saline injections, transfusions) have met with very limited and short-term success so far. "All of the body's normal mechanisms to restore blood [when it's lost in other ways] seem to be turned off." It's as if the CFIDS body wants to have low blood volume and that its blood vessels want to stay constricted. Bell likens the blood vessels to furnace pipes that are only half the proper diameter-and you simply can't make a metal pipe hold more fluid than the pipe is built to carry.
Next - Part 2
Copyright © 2000, Joan S. Livingston
Posted with permission from the author.
This article was originally posted at chronicfatigue.about.com in July 2000.
Note: Dr. David H. Streeten died September of 2000. His research and understanding of Orthostatic Intolerance (OI) will always be greatly appreciated.
Information in brackets has been added.