30 — The Prince George Citizen — Thursday, December 24.1987
'Maybe' diseases cannot be ignored
             by ANDY OGLE For Southam News
  EDMONTON — Today it has names like chronic fatigue syndrome, yuppie flu, chronic mononucleosis, or chronic Eppstein Barr virus syndrome.
  In the 19th century, Victorian women “took to their couches” in mid-afternoon with the vapors. Once-stur-dy men who found themselves lacking energy and their accustomed strength were told they had soldier’s heart, so-called because it seemed to occur frequently in active-duty soldiers.
  There were also illnesses with more scientific sounding names — neurasthenia and sporadic neuromyasthenia, both characterized by a vague fatigue.
  What all these and more modern conditions ranging from hypoglycemia and chronic candidiasis to fibrosi-tis and total allergy syndrome have in common is the lack of anything measureable that can contribute to a definitive diagnosis, says Dr. Stephen Straus, head of the medical virology section of the National Institute to Allergy and Infectious Diseases in Bethesda, Md.
  Straus calls them the “maybe” diseases.
  That doesn’t mean they aren’t real, Straus said in Pittsburgh at a recent briefing for science writers sponsored by the Council for the Advancement of Science Writing. These people do have something wrong with them, he said. “It’s not that they’re maybe sick but that we have maybe diagnoses.”
  Patients come in with a long list of complaints. “They’re exhausted, have recurrent sore throats, and headaches that are different from headaches they had before, their lymph nodes are tender they have a history of psychiatric problems, usually bouts of depression, a history of allergies, difficulties sleeping, all sorts of things that make them very lonely, very miserable people.
  “And if they’re not lonely, then their families are miserable. I don’t want to be facetious about this because in fact these people are very unhappy and we’re doing a very bad job of providing adequate answers.”
  Straus first got involved in the search for an explanation in 1979 when he saw a young man from southern New Jersey who’d had a bout of mononucleosis a year earlier and just never got better.
  Over the next three to four years, Straus examined another 23 people with essentially the same clinical symptoms — chronic fatigue, fever and swollen lymph nodes. He and his colleagues did series of blood tests
which found abnormal levels of antibodies to the Eppstein Barr virus, the most common cause of mononucleosis.
  One of five herpes viruses, the Eppstein Barr virus (EBV) infects virtually everyone and remains in the body for life. It invades salivary gland cells and white blood cells called B lymphocytes. These B cells produce antibodies as part of the immune system’s response to invasion by foreign substances.
  In less-developed countries, EBV infections occur in almost all children before the age of five, usually with no visual symptoms.
  In industrialized countries, about half the population manages to avoid EBV infection until their late teens or early 20s. About a third of these people come down with acute infectious mononucleosis.
  The fever, swollen lymph glands an other symptoms of mono result not from the virus itself but what is believed to be an excessive reaction by the body’s immune system.
  Normally, after the acute stage of infection the virus is dormant, kept in check by the immune system. Could some immune system defect allow sufficient reactivation of the virus to produce a milder chronic form of mononucleosis?
  Straus and colleagues at the NIH tested this hypothesis in a three-year study of 30 patients. Each patient was treated twice, once with acyclovir, an antiviral medication known to inhibit EBV and to be effective against other herpes viruses, and once with placebos, substances that resemble the drug being tested.
  A lot of the patients got better, a majority only temporarily, but some stayed better, Straus said. But just as many patients on placebos improved as did those getting acyclovir.
  Then in 1985, the chronic mono-EBV story really took off when reports of an epidemic at Lake Tahoe, Nevada surfaced. It began when one medical practice at the resort village noticed a sharp increase in the number of patients coming in with an unusual chronic illness. In 18 months, about 200 people with the same problems were seen.
  Both the Centre for Disease Control in Atlanta and the National Institute for Health where Straus works studied the Lake Tahoe epidemic. Again there were no clear answers.
  The CDC looked at a small group of about 15 patients who came down with chronic fatigue after an acute infection. Investigators found the patients had
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high antibody levels to the Eppstein Barr virus but also had high antibody levels to other herpes viruses.
“They left throwing up their hands saying, ‘yes we know these people are sick but it’s not EBV.’”
The NIH investigators noted the epidemic occurred in a small clusters in Tahoe and surrounding communities. They soon concluded they’d seen this kind of thing before in the medical literature, especially in the 1940s and 50s. Then it was termed epidemic neuro-myasthenia.
“The first report of this type of Lake Tahoe phenomena actually was in Los Angeles in 1934,” said Straus.
“There was an outbreak among the staff of Los Angeles County Hospital — nurses mostly, and some physicians. It actually reached very serious proportions and shut down part of the hospital.-“Over the years there have been many names given to the same types of epidemics of fatigue, feverishness, sore throats and aches and pains involving anywhere from a few to hundreds or a thousand cases.
“They involved primarily young to middle-aged adults, anywhere from 60 to 90 per cent female, almost always Caucasian, generally highly educated.
“And it’s those outbreaks that largely characterize the population of Tahoe. They also largely characterized the population said to have fibrositis total allergy syndrome or hypoglycemia or all the other things that are in this medical soup can.”
What really happened in Lake Tahoe? The media attention, Straus said, was probably greater than either Lake Tahoe or the syndrome warranted.
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   “You might consider this a pseudo-epidemic of neuromyasthenia, meaning that there were these small clusters of some illness that may have been related in terms of the organism causing it.
   “But what happened is that those few people got washed away by the hundreds of other people who came running in once they read there was an unusual disease that makes people tired. They then became statistics on the grand roster of new patients who hadn’t been seen previously with this problem.”
   In other words, Straus said, there could have been an element of mass hysteria at work.
   Other studies have shown some people are psychologically vulnerable to continued illness after an acute infection.
   A whole new field of research in the ‘80s has shown there is a very real mind-body link. Emotional states can affect hormone levels which in turn affect the immune system and its response to infection.
   “To tell a person that it’s all in their mind is hurtful to them but it may not be incorrect. The mind is very powerful.”
   Straus feels people suffering from the maybe diseases are a mixed bag. Some may have other definable diseases but they haven’t yet been properly tested.
   Others may have a mixture of things going on persistently in their bodies that involves some subtle immune abnormality.
   (Andy Ogle is science editor of the Edmonton Journal.)
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