Guest Blog by Erik Johnson
“This seemed to be evolving, before our eyes, from a flu-like illness into something else”
-Dr. Paul Cheney
“… and it seemed to be spreading. Through the local hotel and casino, two area high schools, members of a girls basketball team.”
-Dr. Nancy Snyderman
“That’s when we wondered, Hey, maybe we ought to call somebody. This is really unusual.”
-Dr. Paul Cheney
Page 14A Tahoe World Thursday, Oct 24, 1985
At Least Six Were Affected
Truckee Teachers Recount “Malady”
By Barbara Barte
Irene Baker, one of about a dozen local teachers who have been diagnosed as having chronic mononucleosis, is exasperated with doctors who dispute the findings of the two Incline Village doctors who have diagnosed 90 local cases.
“I know that I’m sick and I think it’s more than coincidence that five teachers who share the same prep period have the same symptoms.” Baker said Tuesday.
She spent most of the summer in bed and has not been able to return to her teaching job at Tahoe-Truckee High School this year. Her daughter, Laura, was also sick but has gotten better, she said.
Baker said at least six other Truckee teachers — Andy Antonucci, Gerry and Janice Kennedy, Karen and Michael Cosgriff, and Jan Showalter — have similar symptoms and the same diagnosis, as do three North Tahoe High School teachers.
Symptoms are “fatigue and killer headaches, sore throat, swollen lymph nodes, pain in the spleen area and the inability to stand up for more than a short period of time,” she said.
While she has all the above symptoms and most share the fatigue and bad headaches, not all have the other symptoms. Most were sick all summer, some have returned to teaching full – or only half time, and some are still not able to work.
“Eventually, everyone ended up at Peterson and Cheney’s office,” she said, referring to Incline Village Drs. Daniel Peterson and Paul Cheney, who have been criticized by other doctors for their chronic-mono diagnoses.
“I don’t think Peterson and Cheney are off-base,” said Baker, “and what bothers me is that these doctors who are being so critical haven’t seen patients with these symptoms, or, if they have, they haven’t listened to them.
“One teacher was told she just had an allergy, and she was so sick. Others are told they’re depressed. I had gone to Peterson and recommended him to other teachers.
“Peterson and Cheney believed we were sick. That’s why they got all these patients. All of us showed negative on a mono spot test, but not on an E-B panel.” (See other story for a description of the controversial Epstein-Barr test )
Since becoming ill, Baker has been finding out what she can about chronic mononucleosis and has learned that there isn’t much research on the disease.
She has learned, however, that she is not alone, as someone sent her a list of 200 names from a national support group.
Since reading a paper by a Wisconsin doctor who believes he had a latent mono virus reactivated by the toner in his copy machine, she wonders if two copy machines in the teachers room could be at fault.
Cheney says that certain drugs and chemicals can cause latent mono infection to become active again. So can other illnesses, such as cancer and rheumatoid arthritis. In fact, he says, the tiredness associated with these diseases my be due to reactivated mono.
“Phorbol esters used in copy machine toner, the tung oil in many furniture polishes and in certain glues and varnishes and even in some houseplants may reactivate the mono virus that is latent in 90-percent of adults,” says Cheney.
While this may be the cause of a few local cases, however, he says he is more inclined to believe a reactivation was triggered by another virus last winter.
“I wouldn’t want people to go around unplugging their copy machines,” he says. “if it is a common chemical, how come it caused problems this year and not last year? It was more likely a virus.”
If reactivation is caused by a chemical, he said, “a lot would depend on the concentration, ventilation, and a lot of other variables.”
Cheney agrees with Dr. Gary Holmes, a viral-disease researcher from the Center for Disease Control in Atlanta who is investigating the Tahoe-Truckee cases, that chronic mono is not easily transmitted from person to person.
“Ninety percent of all adults are immune to it because we already have the latent virus,” says Cheney, “but I believe that something happened last winter to reactivate the virus in many people.”
He says that, because the virus that causes mono is a member of the same family as the herpes virus, a mono treatment is being studied using a new drug for herpes. “Results are still pending but may be in by mid-winter,” says Cheney.
Although the CDC researcher who investigated Cheney and Peterson’s findings says he doesn’t believe there is an outbreak of chronic mono in the area (see story) and other local doctors also dispute the claims, Cheney says he is convinced at least 90 local people had a mono virus reactivated last winter.
He has seen no new cases since late summer and says “This thing has a beginning, a middle, and an end.”
Irene Baker and some other locals are still waiting for an end to their illness, though. “It’s all I can do to go to the doctor, maybe stop at the store, and get back to bed.” she said Tuesday. “I just talked to Karen Cosgriff (who is back teaching half-time) and she was going to go lie down.
Two teachers from the Truckee teachers lounge happened to be in Peterson’s office when CDC epidemiologist Gary Holmes was there. They asked to see him for something that was on their minds. Gerald and Janice Kennedy, along with Irene Baker, wanted to know why the flu-like illness could rage through the school, but the teachers IN that lounge were the only ones who didn’t recover.
Gerald Kennedy spoke of his speculation that perhaps the fumes from the copy machines made the difference, or perhaps something bad in the filters from the heating system. Could a toxic exposure be responsible for allowing the virus to take hold?
Gerald recounted, “I remember telling him (CDC epidemiologist Dr. Gary Holmes.) about the filters. You could tell he though we were a bunch of loonies. That was early into it, and we were still thinking, Well, maybe we ARE crazy. But you would think we would be questioned, at least, and there weren’t a lot of questions. He just nodded his head. He seemed to have already made up his mind about us.”
Now… think about it. What did Irene, Gerald and Janice ask for?
Did they say “Please Dr. Holmes, help us with the horrible virus”?
No, they wanted to know what it was about that room which made the difference.
Dr. Cheney and Dr. Peterson said it appeared to the new concept called “Sick Building Syndrome”, but what made it sick? The copy machines? The carpet? Mold in the air filters? All of them? This is what they wanted to find out.
As seen in the newspaper, Dr. Cheney had already decided that it must be a virus, and thanks to other clusters in other schools, reasoned that this factor hadn’t changed. That left only the virus.
Air quality investigators were called in, but they found nothing unusual in the way of Legionnaires disease or chemical fumes.
But here is the critical point. “Toxic Mold” had not yet been discovered, and wasn’t even in the medical literature.
The first literature on toxic mold didn’t appear until 1986. (References to come in another blog.)
The teachers could point all they wanted, but from the Indoor Air Quality experts and a doctors “peer reviewed literature” point of view, there was officially nothing there.
The investigators looking at this incident reached a fork in the road, chose the one in accordance with their literature, and never looked back.
As told in Dr Ritchie Shoemaker’s 2005 book “Mold Warriors”, I tried to call CFS researcher attention back to the “unexplained” mold, but to no avail.
Mold Warriors by Dr Ritchie Shoemaker
Gateway Press 2005
Mold at Ground Zero for CFS
History Doesn’t Remember the Names of the Critics
The history of medical practice is filled with ideas that failed the test of time. Medicine evolves as new information arises, some ideas don’t last.
As a simple example of theories of illness that were accepted practice but found later to be wrong — and there are many — do you remember the bland diets that were prescribed to treat ulcers? That therapy dominated medical practice until stress was blamed for excess stomach acid production. That was the era of the diagnoses of stress-induced stomach problems, as wrong headed then as the idea now that mold illness is stress-related.
When we found out that many stomach conditions were actually an infectious disease caused by Helicobacter Pylori, goodbye stress theory. Fortunately, the discovery of an infectious source of ulcers, as opposed to stress and other psychological contributors, has meant new treatment for other sufferers.
The history of medicine is also full of individuals who single handedly blocked the development of new ideas. The victories of knowledge achieved by medical greats like Louis Pasteur and Joseph Lister, came only after intense battles and vicious personal attacks by so many of their “peers” were rebuffed by truth and science. The Listers and Pasteurs were right. Their many detractors were wrong. History doesn’t remember the names of the critics.
The history of Chronic Fatigue Syndrome (CFS) begins in Incline Village, Nevada in 1985. In the medical history of CFS, each of the concepts applies–failed theories and failed criticism.
One victim, Erik Johnson, told everyone who would listen that mold was a cause of CFS. He came up with his theory at the wrong time in the politics of medical opinion, as a unknown viral cause was blamed instead. Johnson tried repeatedly to get the attention of leading CFS researchers then and now to look at what he knew about mold sensitivity. None of the heralded CFS researchers would listen.
Johnson tried to tell all that mold avoidance helped him return to a normal life after repeated bouts with mold illness. No one in an authoritative role listened.
We now know the mold connection to CFS is incredibly strong. The resistance to that idea is also incredibly strong, as the longstanding idea about CFS said often enough and loud enough and supported by the CDC, are believed by many, And if there’s a tragedy of the CFS story, it’s that Erik was right from the start. No one listened.
Mold hurts us. Until now, few have listened.
Two practicing physicians, Drs. Dan Peterson and Paul Cheney saw something completely new in their practice in Nevada in 1985. Suddenly they were seeing numerous people with multiple health symptoms, especially a strange “bone-crushing, devastating fatigue,” but there was no obvious cause. They felt that an infectious disease, a virus, was responsible for the outbreak. Just look at all the people made ill in one area. It had to be infection (I wonder if they discounted the possibility of exposure to a toxin, or just didn’t even think of the possibility?)
At first, an epidemic of Epstein-Barr virus infection was blamed, leading to the “chronic mono,” and “Yuppie Flu” concepts. As Peterson and Cheney pursued an academic basis for CFS they discovered significant clues in esoteric biochemical research that suggested an unknown virus was responsible for the chronic symptoms experienced by sufferers of CFS.
If only those caring physicians had listened to one sufferer, vocal proponent of mold as the source of the CFS epidemic, how would medical history have been changed? As you’ll see, biotoxin exposure, especially to mold, was a gigantic player in the development of CFS and continues to be so to this day. But with the viral source of CFS eventually accepted as plausible by much of organized medicine, who’d listen to alternative theories? No one.
In the true story to follow, you’ll read how one person found a way to reduce his multiple health symptoms by avoiding mold exposure. He represents a group of people who likely don’t have biotoxic illness from mold, but their illness is still caused by mold. For the 25 percent of people with a genetic basis for a mold toxin illness, and therefore, absence of any significant self-healing once ill, the approach of the “Stachysterian”, Erik Johnson, to restoring health will never work. But for many of the 75 percent of the population, some to whom have illness from mold and initial sensitivity to mold toxins, Erik’s story makes him a Mold Warrior.
Erik remains bitter that his correct insights about mold and CFS were ignored for 20 years. But like so many people in medical history who were right but ignored, he must be content that his ideas are now validated. We will have many more years of clinical research to follow 2005, beginning by educating the “CFS establishment.” That will take swimming upstream against the CDC once again but Mold Warriors will offer a new set of ideas and data for the Chronic Fatigue Syndrome experts.
That is, if they read it.
In the 1994 abstract by Chester and Levine, the association of SBS and CFS was reported, based on the very incident that started CFS, but as you can see, testing for fungi was “unremarkable”:
Concurrent Sick Building Syndrome and Chronic Fatigue Syndrome: Epidemic Neuromyasthenia Revisited
Alexander C. Chester and Paul H. Levine From the Georgetown University Medical Center, Washington, D.C., and the National Institutes of Health, Bethesda, Maryland
Sick building syndrome (SBS) is usually characterized by upper respiratory complaints, headache, and mild fatigue. Chronic fatigue syndrome (CFS) is an illness with defined criteria including extreme fatigue, sore throat, headache, and neurological symptoms. We investigated three apparent outbreaks of SBS and observed another more serious illness (or illnesses), characterized predominantly by severe fatigue, that was noted by 9 (90%) of the 10 teachers who frequently used a single conference room at a high school in Truckee, California; 5 (23%) of the 22 responding teachers in the J wing of a high school in Elk Grove, California; and 9 (10%) of the 93 responding workers from an office building in Washington, D.C. In those individuals with severe fatigue, symptoms of mucous membrane irritation that are characteristic of SBS were noted but also noted were neurological complaints not typical of SBS but quite characteristic of CFS. We conclude that CFS is often associated with SBS.
Recently recognized as an occupational disease, sick building syndrome( SBS) is characterized by symptoms of mucous membrane irritation (e.g., rhinitis, conjunctivitis, and cough), fatigue, and headache 1-5]. Outbreaks of SBS are generally described among employees in multistory office buildings constructed after 1965. Sealed windows, closed
fresh-air intake ducts, and an impervious external shell usually describe the structure . In affected individuals symptoms often abate over the weekend when they are away from the job site.
Chemical or microbiological contamination may be found, but more typically the evaluation is unrevealing . Epidemiological studies clearly implicate the workplace, thus discounting earlier suggestions of “mass hysteria” [6-8]. Furthermore, improved ventilation often helps, thereby suggesting that the “tolerable” levels of contaminants may produce the syndrome by acting in concert. As yet unidentified agents, toxin(s) or microbe(s), however, must also be considered.
Chronic fatigue syndrome (CFS), a term recently coined for a long-known condition, is characterized by extreme fatigue with other agreed upon criteria including sore throat, headaches, and neurological complaints [9-13]. The illness often has a sudden onset, demonstrable lymphadenopathy, low-grade fever, and possibly a psychiatric contribution [14, 15]. CFS has followed clearly documented infections with the Epstein-Barr virus, cytomegalovirus, and human herpesvirus type 6 [16, 17]. Psychiatric trauma and exposure to toxins are also apparent precipitating agents . Many patients have elevated titers of antibodies to a number of viruses, abnormal production of interferon, and depressed function of natural killer cells [ 19-22].
Of these patients 50% to 80% have allergies compared with 17% of the general population. None of the proposed etiologies for CFS have been substantiated. Documented cases of CFS have been reported as part of disease clusters in varying proportion[s2 4-26]. Outbreaks of epidemic neuromyasthenia (ENM), which is known variously as postviral fatigue syndrome, epidemic myalgic encephalomyelitis, and Iceland disease, have been described since 1934 [27-31]. The signs and symptoms are different among varying clusters, thus suggesting that the term ENM may actually represent more than one disease process [32-34]. The variability of physical and laboratory findings for ENM is similar to that for CFS, as are the symptoms.
Headache, fatigue, and upper respiratory problems are noted in addition to neurological and musculoskeletal complaints that may be quite severe. Many investigators suspect viral causes, although none have been documented.
We describe three outbreaks of SBS associated with the development of CFS. All outbreaks were characterized by perceived poor air quality and the symptomatic triad of SBS of fatigue, headaches, and upper respiratory complaints. The prevalence of severe fatigue varied significantly among the outbreaks, thereby suggesting that the inciting agent(s) differed quantitatively or qualitatively. Nevertheless, the link of CFS with SBS suggests the possibility that the agent(s) responsible for the traditional symptoms of SBS may also trigger CFS.
Coincident with, and reported as part of an outbreak of CFS (1985) in northern Nevada and California [13, 17, 24], nine of 10 high school teachers who used a single, small, poorly ventilated conference room became ill sequentially. All nine teachers required a leave of absence, and two retired. Eight teachers remain ill 5 years after the onset of the outbreak. The one unaffected teacher spent less time than the others in the conference room, often doing his work outdoors.
Elk Grove, California.
In October 1989 the smell of fumes was noted in the J wing of Elk Grove High School, which is located near Sacramento, California. Two teachers soon became ill, thereby prompting complaints about the building to the school district. Within months 19 of the 23 teachers in the J wing (-20% of the entire faculty) complained of an illness characterized by recurrent sinusitis, headache, and fatigue. Additional complaints included cough, sore throat, tender cervical lymph nodes, myalgias, and depression.
An industrial hygiene survey documented CO2 levels acceptable to the Occupational Health and Safety Regulation Authority but in excess of the standards of the American Society of Heating Refrigeration and Air-Conditioning Engineers because of insufficient air flow. Excessive levels of volatile organic chemicals (toluene, xylene, and formaldehyde) were not detected. Tests for fungi and bacteria were unremarkable.
So, there you see. CFS researchers speculated there was a risk factor for CFS in sick buildings, but that is where it stopped.
Just speculation, and nothing more. No interest, no follow up, and just as Gerald said, no questions.
I often think of his words. You would think there would be questions, but there never are any.
This situation of CFS researchers manifesting zero curiosity about the inception of CFS, never looking back, continues year after year.
As seen in this 1999 “The Invisible Disease” article, neither the author or the CFS researcher they consulted appear to know anything about the history of CFS.
Not even about the HBLV (HHV6A) or Asian flu, which was in the newspapers, and listed as the reason NIH investigators became interested in the Tahoe Mystery Illness. All these researchers did was continue to “educate” everyone that “Nothing is known about CFS” and work to crush clues.
The Invisible Disease:
” Of the dozen or so teachers who regularly gathered in the makeshift faculty lounge at Truckee High, 11 developed symptoms of CFS.”
If researchers are right about the role of the stress-response system, the cluster might have occurred because the teachers were exposed to the same intense physical or psychological stress, or to several stresses, and those with a predisposition to CFS then fell ill. But no toxic chemicals were ever detected in the ventilation system or water pipes or anywhere else. Records show no particularly bad cold or flu making the rounds that year, nor any obvious psychological trauma the teachers had in common. And the many other people in the area who got sick around the same time had never been inside the school or had contact with those teachers.
The Invisible Disease
When Irene Baker found out she had chronic fatigue syndrome, some doctors said it was all in her head. Others said she’d never recover Boy; were they wrong.
HIGH IN CALIFORNIA’S Sierra Nevada, seasons change with astonishing swiftness. One day it’s fall, the aspens ablaze with golden light. Then the first winter storm barrels across mountain passes, blanketing the slopes in white. For a time the world belongs to skiers and snowboarders, who flock to the peaks around Lake Tahoe to throw themselves gleefully down powdery trails. Then, just when it seems winter will never end, an improbably warm day coaxes wildflowers from the clearings, and suddenly hikers and bicyclists are charging up the mountains for top-of-the ridge picnics.
Irene Baker’s a local, and she loves it all–the fierce, frigid storms, the shimmering summers, the allure and challenge of a constantly changing landscape. That’s why it’s so hard for her to think back to the time, 14 years ago, when it looked as though so much of what she loves about her life might be snatched away.
“It’s almost as if that all happened to someone else, not me,” she says, taking a break from errands at a coffee shop not far from the high school where she used to teach. With cheeks flushed, her bright eyes flashing with restless good humor, Baker could be cast in a commercial for some new age-defying, health-boosting supplement; she looks that vibrant.
Which is exactly how she thought of herself before the trouble began, before the appearance of a mysterious illness that would knock her life off track.
Baker was in her early forties then, teaching social studies full-time at Truckee High School and raising a ten-year-old daughter on her own. “I’d been feeling fine, working hard, jogging up into the mountains whenever I could. Everything seemed to be going so well,” she remembers.
“Then one day I put on running shoes to go jogging, and I just couldn’t do it. That had never happened to me before. It was as if there were heavy weights tied to my arms and legs. It was a kind of dead tiredness I’d never felt.” The symptoms might have heralded a bout of influenza, but even the nastiest flu lifts after a week or two. Whatever this was only got worse as the weeks wore on.
“I’d try to do something around the house for a few minutes, and that would be it for the rest of the day. I’d be utterly exhausted,” she says. “For the first three weeks all I did was sleep. Then, after that, I couldn’t sleep.” She began to suffer night sweats, blinding headaches, a burning throat. Worse still was the feeling of being enveloped in a mental fog.
“I couldn’t concentrate. I couldn’t read,” she says. “My brain just seemed disconnected. I tried to keep teaching, but I’d be writing something on the blackboard when all of a sudden the kids would say, ‘Mrs. Baker?’ and I’d look up to see that what I’d written made no sense at all. I really began to wonder if I was losing my mind.”
In fact, Baker was one of the first people diagnosed with what has come to be called chronic fatigue syndrome, or CFS, a condition now thought to afflict anywhere from a half million to a million Americans, making it perhaps as common as Parkinson’s disease and lupus. Researchers chose the vague name because they had little to go on, just a sketchy collection of symptoms dominated by prolonged and unexplained exhaustion. Then, as now, people with CFS experienced a grab bag of other complaints, including headaches, muscle or joint pain, tender lymph nodes, sore throat, and memory trouble.
Over the course of a few months, more than 200 people from the little towns around Tahoe and the surrounding region were struck down by the same baffling set of symptoms. Investigators from Harvard University, the National Institutes of Health, and the Centers for Disease Control and Prevention arrived, followed by members of the media, who brought the apparent epidemic into the national spotlight.
Still, plenty of doctors scoffed at the notion that some sort of plague had descended. It was much more likely, they said, that patients were feeding on each other’s anxiety, or that their fast-paced lives had tired them out. Reporters, noting the affluence of some patients,
dubbed the ailment “the yuppie flu.” Meanwhile, business leaders around Tahoe fretted that all the bad publicity would scare off tourists.
‘Most of the doctors here in Truckee thought the whole thing was in our heads,” Baker recalls. “Right here from the start, there were people who were sure we were making the whole thing up.”
Baker knew otherwise. Morning after morning she barely had the strength to get her daughter ready for school. She had to give up teaching that spring and couldn’t go back in the fall. “I was scared to death,” she says. “I had a ten-year-old daughter. I was a single parent. I had no idea if or when I would be well again, when I could go back to work. I thought I’d lose my house, my job, everything.”
The blackest moment came in 1986 as she related her symptoms to health investigators, who suspected a smoldering virus was to blame. “I remember one of them telling me, ‘You’ll probably be like this for the rest of your life.'” Now she can only shake her head in grim wonder at the strangeness of it all. Fortunately for Baker, the experts were wrong.
Today, after years of tracking the outcomes of some of those first cases and thousands more, researchers finally have a few things to celebrate. For one, they’ve learned that most people get better. Even many of the sickest recover fully, as Baker did; others get well enough to reclaim their lives. It’s now clear that only a small proportion of patients remain debilitated for more than five years.
Also to the relief of patients, early naysayers have been silenced. While the workings of the mind-particularly depression-may indeed play a role in the development of some CFS cases, others seem to result from discernible physical glitches. No one studying the illness these days dismisses the symptoms as those of hypochondria or hysteria.
And there’s more good news. Though much about chronic fatigue syndrome remains bewildering, researchers have begun to piece together what goes wrong. Their discoveries offer real hope to the thousands of people all over the world who continue to come down with the devastating ailment.
IN THE BEGINNING, when word of a strange new malady spread through the towns around Lake Tahoe, people had plenty of reasons to be afraid. It’s bad enough to contract any lingering disease, far worse to have one that doctors say they’ve never seen and can’t identify. And because the mysterious plague seemed to strike in clusters–11 teachers at Baker’s school, girls on a basketball team the next town over, and a number of casino workers across the Nevada state line–many assumed it was contagious.
Mothers hesitated to kiss their children for fear of passing it along, remembers Daniel Peterson, one of the few local physicians to take the illness seriously from the start. “Even at the clinic we weren’t sure what precautions to take. Patients came in asking, ‘What have I got?’ and we didn’t have the faintest idea what to tell them.”
Was a new microbe on the loose? Around the world AIDS had begun to cast a lengthening shadow, spurring worries that other viruses might be lurking. Some people even called the new illness “chronic fatigue and immune dysfunction syndrome” (CFIDS), a name that is still used by a prominent patient support group even though faltering immunity, researchers now know, is only sometimes a feature of the illness.
The Epstein-Barr virus, the culprit behind mononucleosis, was an early suspect. Doctors theorized that some people with EBV might have been unable to shake off the active infection; maybe chronic fatigue syndrome was actually chronic mononucleosis. But the idea didn’t hold. Virologists found that people with CFS were no more likely than healthy individuals to carry the Epstein-Barr virus. Nor did CFS patients show any of the changes in their blood–a rise in antibodies and other immune fighters, for example–that would be expected in someone with a chronic infection.
In the years since, other viruses have come under suspicion only to be exonerated. And despite what initially looked like a cluster of cases, subsequent research has revealed that CFS doesn’t typically fan out through families, day care centers, nursing homes, or other community groups the way microbial illnesses do. In short: It appears not to be contagious, at least in the usual sense.
Furthermore, the illness isn’t new. Around 30 years before the first cases showed up in the Tahoe area, the CDC investigated similar reports of chronic fatigue in Punta Gorda, Florida–an outbreak that never made the national news. Last century doctors routinely diagnosed neurasthenia, a “neurosis characterized by weakness and fatigue,” according to old textbooks; generations earlier physicians treated cases of febricula (which means “little fever”) and nervous exhaustion. Most experts now think those, too, were names for CFS. In fact, many fuzzily defined diagnoses that have risen in favor and then fallen over the years–including multiple chemical sensitivity and even Gulf War syndrome–have at their core a collection of symptoms that fits the definition of CFS.
Each of these conditions in turn has drawn skepticism when straightforward explanations of its origin failed to pan out. But the lack of a single cause doesn’t mean a disease isn’t real, says epidemiologist Paul H. Levine, one of the first scientists to go to Tahoe to investigate and a leading expert on the syndrome.
“A lot of us began with the notion that this might be a viral illness, that we would find a single agent at work here,” says Levine, who recently left the National Cancer Institute to become a clinical professor of epidemiology and biostatistics at the George Washington University School of Public Health and Health Services. “We were following the model of a disease like AIDS or influenza. But that may have thrown us off track. Many of us now think that CFS is probably more like heart disease–a condition that may have a variety of causes.”
A heart attack, in other words, can be triggered by various factors that add up in different ways to the same basic problem. Your arteries may be clogged because your diet is rich in saturated fats or, alternatively, because your body is lousy at clearing even normal levels of bad cholesterol from your blood. High blood pressure, a sedentary lifestyle, or inherited defects in the heart itself are just a few other factors that can predispose you to cardiac arrest. In the same way, chronic fatigue syndrome may arise from a number of characteristics that vary from one person to the next.
Some cases of CFS, scientists have learned in the last few years, can likely be blamed on something no one expected: an unusual type of low blood pressure called neurally mediated hypotension.
When people with this condition stand without moving for ten minutes, they become light-headed or queasy and may even pass out. The fainting happens because the body’s usual mechanism for regulating blood pressure is out of kilter. For unknown reasons, the arteries fail to receive the signal that would normally order them to constrict. (If the vessels don’t squeeze closed a bit, they can’t bump up blood pressure enough to keep a steady supply of oxygen and nutrients flowing up to the head.) After such a fainting spell as many as three out of four patients with this glitch drag through a day or more of disabling fatigue.
In 1995 Peter Rowe and a team at Johns Hopkins University School of Medicine decided to look for signs of this blood pressure abnormality in 23 patients with CFS. The volunteers were strapped to an adjustable table, which was then tilted to a nearly upright position. While the volunteers remained immobile for 45 minutes, doctors checked for signs of dizziness and sinking blood pressure. Indeed, 22 of the 23 patients developed these symptoms.
In the wake of Rowe’s findings, it was easy to imagine that this form of low blood pressure might be the single cause of CFS. But reality, it turns out, is more complicated. Of 200 CFS patients checked in a joint study by the NIH and Johns Hopkins researchers last year, only half had abnormal test results on the tilt table–far less than the 95 percent seen in the earlier study. Even half is impressive, of course, says Stephen Straus, a leading chronic fatigue researcher at the NIH. But researchers don’t yet know how often the abnormality turns up without fatigue in the general population. And what triggers the malfunction in the first place remains an enigma.
In another set of cases, CFS seems to arise from a subtle defect in the body’s ability to deal with physical or psychological stress. Mark Demitrack, a psychiatrist at the University of Michigan, says that because many CFS patients became ill shortly after facing a major challenge to the body or psyche-a viral illness, for instance, or a period of emotional anguish–it made sense to look into their physical response to stress.
The hunch paid off. Demitrack and his colleagues found that some patients with CFS show signs that the system is out of whack, including a slightly damped overall response to stress and, in particular, abnormally low bloodstream levels of the stress hormone cortisol. Evidence that bolsters their theory: When scientists at the NIH recently gave a group of CFS patients a drug that mimics cortisol, two-thirds reported feeling better.
Even if this abnormality turns out to be widespread, it won’t account for everybody. In yet a third group of CFS patients, Levine says, the glitch seems more likely to lie in the immune system, specifically in the realm of so-called natural killer cells, whose primary role is thought to be defending the body against viruses and cancer. For more than five years Levine has been studying a family in which five out of six brothers and sisters plus three close relatives have chronic fatigue syndrome. Six of the eight have abnormally sluggish natural killer cells. The same defect has shown up in a significant number of other patients with the disease.
With three different links to CFS identified already–and still others likely to follow, according to Levine–it may seem as though scientists have merely traded one mystery for a bevy of half-completed puzzles. But teasing apart versions of the illness, Levine says, is enabling the researchers, at least in some cases, to take steps toward treating the underlying problems.
Straus’s team at the NIH has enrolled chronic fatigue patients in a study of a drug that may control neurally mediated hypotension. If the results, which should be ready within the year, are good, then at least one group of patients could be relatively easy to treat. Unfortunately, the cortisol-boosting medication tested by the NIH last year–an altered form of the steroid-proved too dangerous in its side effects to make it a practical therapy for those with stress-mediated CFS. But further research, Straus says, could produce less toxic alternatives. “Things are moving,” says Levine. “There is still plenty we don’t understand about chronic fatigue syndrome. But for the first time, we are beginning to see the light.”
AN EXPERT’S OPTIMISM is cold comfort for people still slogging through the worst of their illness. In 1985 Janice Kennedy and her husband, Gerald, worked at the same school as Irene Baker. Gerald taught shop classes; Janice was an English teacher. Janice was an avid cross-country skier, and both loved backpacking. Then CFS hit, and their lives have never been the same.
While Baker’s and Janice Kennedy’s symptoms came on with the suddenness of a mountain storm, Gerald’s troubles overtook him by degrees; over several months he experienced a steady erosion of energy, a gathering mental cloudiness, and dulling headaches. By the winter of 1986 both were too sick to keep teaching. Twice Gerald tried to go back, only to suffer a relapse. Five years ago, unable to make it through the tough winters in Truckee, he and Janice moved to a small town in the foothills.
“We always loved being outdoors,” says Janice, sitting on the sofa and gazing out at the woods that surround their house. “Now it’s an effort just to get down the hill in the truck to get groceries.” Gerald, a powerfully built man, used to pride himself on his ability to build almost anything and fix what needed fixing. Today he hires workers to do jobs he once did with ease.
“You work at something for half an hour, and if you overdo it, you can end up wiped out for days,” he says. “So we’ve both had to learn to pace ourselves.”
Why some people recover and others languish remains one of the perplexing questions in CFS research, though some scientists have noticed that patients whose symptoms come on rapidly stand a better chance of getting well than those whose illness creeps up slowly. It also seems that when the fatigue persists for more than a couple of years, patients are less likely to recover fully. Those differences, Levine says, may point to different forms of the condition.
Gerald Kennedy’s experience of deep exhaustion following a bout of strenuous activity is common among CFS patients. The solution, as he’s learned, is not bed rest but carefully controlled exercise. While many sufferers shun physical activity altogether for fear of a relapse, the muscle atrophy that ensues makes them even more tired and may worsen other symptoms. Experts now recommend that patients follow a graded exercise program from the start–beginning slowly but building, if possible, to relatively normal levels of activity.
A positive attitude can also help. “People who have a fixed belief that there is a single cause, like some unidentified virus, often have a harder time,” says Demitrack. “They think of themselves as passive victims of something that came in from the outside. They begin with the idea that there’s nothing they can do.” Many CFS experts have begun to prescribe cognitive-behavioral therapy, an approach that’s designed to replace self-defeating attitudes with more optimistic expectations. Preliminary studies show the method works: At Kings College Hospital in London, 70 percent of CFS patients who completed 13 sessions of cognitive-behavioral therapy showed marked physical improvement. Only 19 percent of patients in a group that practiced relaxation techniques got the same boost.
The best news of all is that many sufferers eventually get significantly better, no matter what they do. “In our experience, 10 to 15 percent of even severe cases recover completely over the first 18 months,” says Demitrack, who has been studying the disease for more than a decade. “Another 70 to 80 percent have significant improvement. Only a few–one in ten—experience the worst of the symptoms for more than two years.”
Still, the deeper mystery of what happened in those alpine towns in the 1980s is unsolved. By the time federal investigators arrived, the incidence of new cases was slowing; what initially looked like an epidemic ended as inscrutably as it began. Levine and other NIH researchers have started checking up on 287 patients who were part of that original outbreak. In 1984 no standard definition of CFS existed, and follow-up has shown that less than half fit the current definition of the malady.
Of the dozen or so teachers who regularly gathered in the makeshift faculty lounge at Truckee High, 11 developed symptoms of CFS. If researchers are right about the role of the stress-response system, the cluster might have occurred because the teachers were exposed to the same intense physical or psychological stress, or to several stresses, and those with a predisposition to CFS then fell ill.
But no toxic chemicals were ever detected in the ventilation system or water pipes or anywhere else. Records show no particularly bad cold or flu making the rounds that year, nor any obvious psychological trauma the teachers had in common. And the many other people in the area who got sick around the same time had never been inside the school or had contact with those teachers.
Whatever clutch of factors led to the outbreak seems to have dispersed. Today Peterson still gets new cases in his CFS clinic, but the numbers are now close to averages seen in similar practices. Three years ago epidemiologist Bill Reeves, who’s in charge of chronic fatigue research at the CDC, took his investigation to the heartland and captured what is considered to be the most accurate picture of how frequently CFS occurs in the United States today. He and his team studied a cross section of people in Wichita, Kansas, a city whose demographics provide a snapshot of the nation as a whole. There were 183 cases of CFS for every 100,000 people. The illness was even more common among women: 303 cases per 100,000–almost six times the rate for men.
FOR IRENE BAKER, those first six months starting in the spring of 1985 were as bad as anything she’s ever experienced –the headaches, the moments of confusion or forgetfulness, the oppressive fatigue. But one day, like melting snow, the symptoms began to recede. A year after she became ill, she was able to return to work part-time. Today she’s teaching full days–a rambunctious class of 32 fifth graders. “I’m my old self again,” she says. “I’m back to being able to do everything I want. And I have to say, I consider myself very, very lucky.”
Too Tired for Words?
Everyone gets worn out now and then. Even a week or two at a low ebb is nothing to worry about, especially if you’re busy or under stress. But if the lethargy lasts longer, talk to your doctor, since abiding exhaustion can be a sign of trouble. Problems to consider first: sleep disorders, mononucleosis, hepatitis, heart trouble, depression, and eating disorders, all of which sap energy. Only when other explanations are ruled out is chronic fatigue syndrome a likely suspect.
Unfortunately, there’s no simple blood test or other easy way to diagnose CFS, SO experts are left with comparing your complaints to a laundry list of common symptoms. The hallmark is fatigue that has lasted at least six months. In addition, experts look for four or more of the following: Problems with memory or concentration Sore throat Tender lymph nodes in an armpit or the neck Muscle pain Joint pain Unusual headaches Waking up tired Exhaustion after physical activity
By Peter Jaret Peter Jaret is a contributing editor. Source: Health, May99, Vol. 13 Issue 4, p114, 9p
Although I had literally started “Chronic Fatigue Syndrome” by telling Dr. Cheney about the mold, and after years of asking, and realizing that no CFS researchers ever intended to study this factor, I hired a mycologist in 1997 to accompany me to various mold colonies. When I disturbed one that had this same sensation as the teachers lounge, I had it identified.
This opened up a whole new world. The body of literature on Stachybotrys had exploded since it was first described in the literature in 1986. I went back to Dr. Peterson with my new evidence and a few magazine articles about Sick Building Syndrome, and asked him to study it.
Mold Warriors by Dr Ritchie Shoemaker
Chapter 23. Mold at Ground Zero for CFS
“History Doesn’t Remember the Names of the Critics”
–Erik Argues with his Doctor and His Doctor Doesn’t Listen. Chronic Fatigue Research is Misguided for Years–
“When am I going to get an answer?”
This time it was my turn to be the angry person yelling in front of the desk. I leaned over and shouted. “You’ve been stringing me along for a year. Are you going to help me or not? I need an answer and I need it now. Just tell me YES OR NO.”
When I asked Dr. Peterson for an honest assessment of my condition, he told me “You are at a point where most people with CFS commit suicide.” Yet, despite the bizarre onslaught of chemical sensitivities, there was one irritant that stood out above all others, and I was determined to find out why.
I asked him again if he would help me research mold, and this time I got a definite answer. “No.”
Dr. Peterson had been my last, best hope to find an open minded doctor who would help me with this particular problem; so many others had refused.
Now, the obvious question that CFS researchers should have asked, (but refused to, even after they were told the answer and informed that, as CFS researchers, it is their responsibility.. if they want to “solve CFS”)… is whether a substance that showed up in the VERY cluster of mystery illness that started CFS was also present in others, such as the Elk Grove teachers mentioned in the abstract.
It was a simple matter to call them up. The answer was yes. They knew all about it.
The toxic mold Stachybotrys was identified in Elk Grove school AFTER this phenomenon was discovered, just as it was found and remediated in our schools.
A common denominator had emerged in the VERY SBS/CFS cluster that started the syndrome, and CFS researchers knew nothing about it.
I was excited to have information that CFS doctors, researchers, advocates and patients would want to have. And began contacting them. I hit all the top ones, the institutes, the CFS advocacy orgs, such as the CFIDS Association of America, the NCF and IACFS/ME… ME groups. British ME/CFS doctors, groups, researchers, etc.
Here is how they responded.
“You can’t prove it.” “It’s anecdotal, doesn’t mean anything.” “That doesn’t matter. CFS has moved on since then.”
Not once, twice, or even a few hundred times. I got this same reaction a THOUSAND times. Barely a handful of patients were interested, but no one else.
It is clear that while patients believe these abstracts are intended to inspire “further study”, the reality is the exact opposite. These documents are wielded like weapons of suppression to “prove” no one knows anything, or CAN know anything about the subject matter.
Clues in plain sight remain unseen due the dominance of clue-crushers who fight to maintain CFS in a state of confusion.
Even to the extent of “oblivionating” the first eight years of CFS history, and battling down information from the very inception of the syndrome. And this isn’t by the CDC/NIH or DHHS.
It is by CFS doctors-researchers-“historians”-advocates and documentarian who otherwise say they all want to get at the “real truth about CFS”.
The original CFS cohort, along with our evidence, was deliberately “INVISIBLED” by the very people claiming to represent and study the disease.
And thanks to the 100% refusal rate of CFS researchers to respond, even to this very day, the Tahoe Mystery Illness remains The Invisibled Disease.
Next topic. Why it IS possible that multiple buildings can get worse at the same time.