1975 Sacramento outbreak

In 1975, an outbreak of ME/CFS occurred at Mercy San Juan Hospital, in Carmichael, a suburb of Sacramento, CA, predating Incline village. More than two hundred people came down with the illness. Dr. Erich Ryll, an Infectious Disease physician, was appointed chair of the committee to investigate the outbreak. He coined the term "Infectious Venulitis" or (IVN) to describe it, though he later considered it a "variant" of ME/CFS. The reason he thought this outbreak was different was because damage to the vascular system was not described in older reports of ME/CFS.

Dr. Ryll describing infectious venulitis: "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. Sufferers are very drowsy at times, especially during relapse that almost resembles a light coma. The extremity discomfort is often described as a burning, searing sensation. Joint pain can be severe. Numbness and tingling of the extremities is common. The cases that occur in an epidemic have spontaneous bruises that occur without any injury, and painfully swollen veins. Those who become ill from the epidemic cases might not show this - these cases are often milder, or the bruises and painful veins might have only been at the beginning and went unnoticed."

The first two cases were reported in February, 1975, but the majority of the cases occurred between July and November of 1975. Several cases were reported as late as 1978. The epidemic first affected the Intensive Care Unit nurses. Soon staff in all departments of the hospital were affected. The hospital workers, in turn, spread it to their children, who then spread it to their teachers. An estimated 200 people became sick in this outbreak.

A representative from the California State Department of Health came for a day. Then, the CDC visited for a week, tested for the known viruses at the time and found none. All the experts were puzzled and stress was mentioned as a cause. Dr. Ryll rejected the employee stress theory.

A follow-up of patients surveyed 30 years later showed that seventy-five percent had permanent disability. Of those who died before the follow-up, 11 of the 14 (79%) were never able to work after the onset of the illness.

Dr. Ryll has followed these patients from this outbreak since 1975 until his death in 2014, making him the longest clinical investigator of ME/CFS in the history of this country. He readily admitted, "Because the complaints of patients were 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."

Items of interest
[http://www.oocities.org/sezar99q/MECFSInfectiousVenulitis.html Dr. Ryll's Patient information handout on Infectious Venulitis, Chronic Fatigue Syndrome, Myalgic Encephalomyelitis]

Obituary: Sacramento’s Dr. Erich Ryll, 93, early expert on chronic fatigue syndrome