Chronic Fatigue Syndrome - Newsweek (1990)

Chronic Fatigue Syndrome - Newsweek (1990) is early investigative reporting and a historical record of Chronic Fatigue Syndrome (CFS), the 1984 Incline Village chronic fatigue syndrome outbreak, discussions with Paul Cheney who had reported the outbreak to the Centers for Disease Control (CDC) and his findings that "sufferers were mass-producing antibodies to Epstein-Barr virus, (EBV) the herpes virus that causes infectious mononucleosis." There are several patient interviews about their personal onsets and symptoms, a CDC general list of symptoms (based on the now retired Holmes criteria created by the CDC in 1988), different names used around the world, theories that the immune system was involved and depression being ruled out, reports of outbreaks around the country, and research.

Note: Outbreaks in the 1980's were endemic. See: List of myalgic encephalomyelitis and chronic fatigue syndrome outbreaks (1984 - North America (Endemic) section).

Patient interviews

 * Nancy Kaiser is an active 38-year-old woman becoming so ill she believed she was dying. "She was weak, profoundly tired and plagued by constant bladder infections."  Muscles aching and mood shifting unpredictably she believed that she was having menopause and it being worse than she could have imagined. She went on to have a hysterectomy. Her health didn't improve and her physicians referred her to psychiatrists "who announced she was mourning her lost uterus. One suggested she have an affair." She saw 212 different experts. Her eyesight began to fail and was having a dozen minor seizures every day. Her concentration and memory were so impacted she could not get through a TV show and her IQ dropped by 22 points. She finally found relief with an experimental AIDS drug, Ampligen.


 * Gino Olivieri was a police officer in Rochester NY who had been a canine handler, SWAT team member, and a field training officer. After falling into an ice-covered pond during a late-night burglary chase and being treated for hypothermia he developed bronchitis. He did not recover and began to experience unending flu. Three years later he has not been able to return to work. He developed a fatigue which went deep into his muscles and bones as well as several eye problems. Olivieri is lightheaded and has body wide lymph node swelling, nausea, and experiences confusion and tremendous insomnia.


 * Chris Spalding and her two children came down with intestinal flu. Her daughter recovered but she and her son remained unwell. Her son kept falling asleep through homework and even while looking for a T-shirt in a drawer and petting the dog. She felt reducing his school hours was a sensible step but the "Truant officers dropped by regularly to lecture him on responsibility. His teachers thanked him sarcastically when he made it to class. The other kids taunted him in the hallways, calling out, 'He has AIDS.' At one point last year, Hoben talked about suicide. But nowadays he feels physically better. 'I never feel energetic and ready to conquer the world,' he says. 'I just know I can survive.' This year, as he entered the eighth grade, school officials flatly refused to let him attend half days. They said that unless he learned to handle full days he would never succeed in high school or a job. Eventually they relented. But, says Hoben's mother, 'they still believe it's an attitude, not an illness.'"


 * Gloria Baker suffered from CFS. Her dog Murphy also became sick two years after she did. Eventually, he had to be put to sleep. Murphy tested positive for HHV-6, the same virus Baker was also fighting. Although there may be nothing to such stories but many patients say they also have sick pets. Dr. Paul Cheney has conducted a survey to gauge the phenomenon. "He will discuss his findings this month at a CFS conference in Charlotte, N.C. In Britain, a wave of bovine spongiform encephalopathy, better known as mad-cow disease, has led patients to wonder whether CFS is somehow related to that phenomenon. Most experts doubt that a single infectious agent is making people and animals sick; viruses tend to be highly adapted to one species or another. But because the illness is still such an enigma, the possibility can't yet be ruled out."


 * Marc Iverson is president of CFIDS Association of America and has CFS. "Suddenly, in the fall of 1979, his energy evaporated. He got vertigo. He couldn't remember things. All that came of four trips to the Mayo Clinic and a month in a psychiatric ward was a mountain of medical bills." (At the time there were CFIDS Association and San Francisco-based CFIDS Foundation which have now become Solve ME/CFS Initiative.)


 * Dr. William Harvey, a specialist in aerospace medicine and a seasoned pilot, suddenly experienced an inability to make sense of commands from the control tower and said it was as if he were dyslexic. 2 weeks later it happened again and he knew he could no longer fly. Dr. Harvery worsened and could no longer work. This began in 1988 but by 1990 he could begin working again although still suffering from muscle pain and persistent bladder problems. He regained vision and clarity of mind.

Symptoms outlined by CDC
"People with chronic fatigue syndrome suffer an array of unexplained symptoms. Eight of the following must persist or recur over six months for a person to qualify as having CFS."


 * Chills or low-grade fever


 * Sore throat


 * Tender lymph nodes


 * Muscle pain


 * Muscle weakness


 * Extreme fatigue


 * Headaches


 * Joint pain (without swelling)


 * Neurological problems (confusion, memory loss, visual disturbances)


 * Sleep disorders


 * Sudden onset of symptoms


 * SOURCE: CENTERS FOR DISEASE CONTROL

Note: These symptoms and criteria are based on the now retired Holmes criteria created by the CDC in 1988.

Different names

 * The different names of the ailment were Myalgic encephalomyelitis (ME), Britain; Natural killer cell Syndrome, Japan; and Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), (USA); but was generally known as Chronic Fatigue Syndrome (CFS).

Immune system

 * Mounting evidence was suggesting CFS is an Immune system disorder.


 * "The emerging hypothesis held that CFS was at root an immune disorder." Some unknown chemical or contagion damages the immune system. This would not be catastrophic, but then this enables viruses normally held in check to start "running amok in the body." Helper T cells would then "start churning out chemicals called cytokines to instigate harsher assaults on the resident bugs. And the perpetual flood of cytokines would, in it self, cause many unpleasant symptoms."


 * Cytokines are known to cause illness and are made up of Interleukin. Interleukin 2 causes a syndrome resembling CFS. Blood samples provided by Cheney and Bell showed "the patients' average interleukin-2 level was 40 times that of healthy control subjects."


 * Dr. Nancy Klimas has found that "certain classes of cytotoxic T cells--killers programmed to attack specific intruders--are either under- or overactive." Neither Cheney nor Bell's or Klimas' findings are unique to CFS, but researchers are optimistic about developing a general profile.


 * Not only were there immune system findings, "scientists have linked CFS to specific neurological problems as well. People with CFS perform poorly on certain cognitive tests, notes Curt Sandman, a research psychologist at the University of California, Irvine, and their problems are quite different from those associated with depression (box)."

Depression dismissed

 * "Chronic fatigue syndrome is sometimes dismissed as depression, but the two illnesses have very different effects on people's mental abilities."


 * Excerpt


 * Most people, whether healthy or depressed, can improve their performance on a memorization test by using cues. But cues are largely worthless to CFS patients, suggesting a diminished ability to form new memories.


 * A depressed person can handle a brief interruption when trying to memorize something. CFS patients' performance suffers six times as much from the interruption.


 * When asked to predict how they'll do on a cognitive test, depressed people tend to underestimate their abilities, but CFS patients tend to overestimate theirs.


 * "CFS strikes people whose psyches are demonstrably healthy and promptly ruins their lives. 'Depression requires a loss of interest in everything,' Cheney observes. 'These patients are just the opposite. They're terribly concerned about what their symptoms mean. They can't function. They can't work. Many are petrified. But they do not lack interest in their surroundings.'"

Outbreaks

 * CFS was probably not a new disease noting "The same baffling symptom complex has turned up both sporadically and in local clusters for more than a century (Florence Nightingale and Charles Darwin may both have been stricken)."


 * The Incline village outbreak, Dr. Cheney reporting to the CDC and the nearly 200 patients who were mass-producing the antibodies to EBV. Patients' "blood tests revealed high antibody counts to herpes simplex and the cytomegalovirus".


 * Dr. David Bell was also experiencing an outbreak in 1986, now known as the 1985 Lyndonville outbreak.


 * Highly respected Dr. Anthony Komaroff studied the Incline Village (Lake Tahoe) outbreak finding unequivocal evidence of an organic illness and Dr. Seymour Grufferman was studying the 1984 Chapel Hill outbreak. Cheney and Peterson had been denounced as quacks.

Research

 * Portland Oregon held a national conference where EBV, newly discovered HHV-6, enteroviruses (poliovirus, coxsackie, echovirus) seemed to be found in the chronically sick but "none was active in every patient, and none turned up exclusively in people with the illness." In 1988 the CDC proposed the name Chronic Fatigue Syndrome. "Its existence could not be denied, but its cause was still a mystery."


 * With sophisticated imaging such as SPECT, patients showed "abnormally low blood flow to one of the two temporal lobes."


 * A retroviral infection was suspected. Virologist Elaine DeFreitas of Wistar Institute analyzed was sent samples by Cheney of CFS patients (she was unaware of the sample's origins) and found all six showed signs of HTLV infection. A larger study of CFS samples revealed "fully 77 percent contained a distinctive piece of genetic material found in HTLV-2. Not one of the 20 samples drawn from the general population contained the same viral gene. Ironically, the findings don't suggest that chronic fatigue syndrome is caused by HTLV-2. For while one of the virus's four genes was very much in evidence, DeFreitas could find no trace of a second. HTLV-2 would be an unlikely suspect anyway, given the way it is transmitted. Like the AIDS virus, it survives only in body fluids such as blood and semen. No one is sure how people get CFS, but it clearly isn't transmitted like AIDS." DeFreitas did one last experiment by giving the blood samples to a colleague at Wistar and the suspicious RNA gene was found to be silent while in six of 12 CFS samples "it was actively churning out copies of itself."

Note: Retrovirus as causation for ME/CFS have never been proven (the CDC could not replicate DeFreitas' findings) and when the XMRV theory fell apart retroviruses have not been further researched.