Wednesday, June 6, 2007

What if the CFS patient is a doctor?

Dr. Erich Ryll, who retired a couple years ago as our local CFS expert, was the investigator in 1975 when an epidemic hit Mercy San Juan Hospital. It was obvious to him that this was a communicable viral disease, and affected all departments of the hospital with equal severity.

Tests for known viruses were negative, but Dr. Ryll was positive that it was some sort of virus. The CDC investigator, however, told him that his colleagues – respected doctors and dedicated nurses – were just lazy and didn’t want to work. Dr. Ryll knew these people, had worked with them for years, and didn’t believe that hard workers could overnight become lazy malingerers.  He continued to look in age-old medical literature for a disease that matched their symptoms, even after CDC dismissed the symptoms as purely psychological.

Just because the patients were doctors and nurses didn’t spare them from the same erroneous assessments of being lazy and/or crazy as lay patients get.

Since Myalgic Encephalomyelitis occurred in small geographic pockets, in epidemics about 10 years apart, if you weren’t in the right place at the right time, you wouldn’t have seen it first-hand. Dr. Ryll and the CDC investigator weren’t at L.A. County Hospital in 1934 or in Iceland in 1946 or at Royal Free Hospital in 1955, so they didn’t recognize the disease at first; Dr. Ryll later recognized it as matching the description of the 1984 Incline Village epidemic, i.e., Myalgic Encephalomyelitis or Chronic Fatigue Syndrome.

For those who’d like to read Dr. Ryll’s entire patient handout or contact him directly:

"I have followed these patients on a daily basis since 1975. This is the longest continual study of this type of disease that has ever been made. Because of this, I have learned all the nuances, all the signs and symptoms of the disease. Because the complaints of patients are so many and often seemingly bizarre, I often attempted to disclaim them as being real. But I learned that you patients were always right and I was always wrong. In studying this disease, one must always have an open mind. This disease teaches the physician to be humble."

"It begins with an influenza-like onset, often so severe in nature that I call it a flu-storm, with headaches, sore throat, fever, dizziness, runny nose, nausea and vomiting, muscle aching, extremity pain, and other features. Unlike ordinary flu, the flu-storm can last from weeks to over a year."

"Because of a frightening new disease that physicians cannot recognize, diagnose, or understand, and because it never seems to go away, patients become depressed. Upon visiting physicians, this depression is recognized and blamed for the entire illness. This of course is not true - the depression is a result of the disease and does not cause the disease."

"The autonomic nervous system that results in flushing, blushing etc., that controls blood vessels is deranged in the disease. Sweating, flushing, icy and blue hands and feet, hot sweaty hands, red and blotchy hands are common. When patients are in relapse it is easy to tell that they are ill; pallor of the face and dark areas under the eyes, etc. But when they are not in relapse, but still sick, they are mistakenly though to be well. One cannot place reliance upon looks."

"Patients have a constant plateau of illness during which they are still not well, but do not appear that ill. Appearances can be deceiving. Bear in mind that many patients with cancer, heart disease, diabetes, and other severe illnesses often appear to look normal to the casual observers they are encountered at the grocery store, church, and other sites."

"The chronic fatigue syndrome first occurred in modern times at the Los Angeles County Hospital in 1934. It occurred in the midst of a poliomyelitis epidemic. Several astute physicians recognized that there was a new disease present. Gilliam, who wrote a large research paper accurately described CFS but did not name it. In the fifties there was an epidemic in Iceland, also associated with a polio outbreak - but again, recognized the be a new disease. It was found that patients who developed CFS became immune to polio. CFS has occurred more or less world-wide. Epidemics have been described in closed, contain populations such as schools, military barracks, convents, monasteries, and specially hospitals."

"There is a very interesting illness called the Post-Polio Syndrome. Patients who have had polio 20-30 years before acquire an illness that closely resembles CFS. I have examined some of these people and cannot tell the difference. Could this syndrome be due to a mutant polio virus that escapes immune detection? Earlier I said that the early epidemics of ME/ENM/CFS were always in association with a polio outbreak. And that those who came down with ME/ENM/CFS were immune to polio."

Dr. Ryll warns "the discomfort of these patients is made worse by the hostility that they encounter from family, friends, associates, and physicians." It’s important for medical professionals to remember that there are viruses for which there are no tests yet – the AIDS virus was killing people before there was a way to test for it – so just because there are no positive blood tests does not mean that there is nothing wrong with the patient. There are neurological and immune system tests that will be positive, and Dr. A. Martin Lerner recommends a Holter monitor be part of every diagnostic process because so many CFS patients have cardiac abnormalities.

Time and again, the symptoms reported by CFS patients and pooh-poohed by doctors as being too bizarre to be believed have been proven to have a biological cause.  Patients complained that exercise made them worse, which doctors couldn't fathom, until a series of research studies proved a variety of objective biological measures of physical abnormalities exacerbated by exertion.

CDC may have told the patients at Mercy San Juan that they were just too lazy to work, but thankfully, the local investigator was their colleague who knew the truth, and kept looking until he found a number of abnormalities that explained the symptoms.  Unfortunately, most CFS patients don't have a doctor who knows them and their work ethic so intimately, and often get tagged with an erroneous and inappropriate label of lazy, crazy or malingering without the proper tests being done to prove they are truly sick with a virus.