One of the pioneers in the world of CFIDS/ME is Erich D. Ryll, M.D., an assistant clinical professor of medicine at the Division of Infections & Immunology Diseases at the University of California (Davis). Dr. Ryll describes infectious venulitis having "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." The drowsiness that occurs "often resembles a light coma." The severe exhaustion that is not accompanied by refreshing sleep can be so severe "many can be totally helpless and unable to care for themselves. Walking at all can become impossible. Cognition and mentation can be profoundly disturbed so that calculating is difficult, directions cannot be followed and filling out forms becomes impossible. "Patients cannot find the right words to say - it is though the brain is no longer connected to the tongue...reading becomes difficult or impossible." While pain can be severe and affect the entire body, headaches are usually the most difficult to control.
Infectious Venulitis is what Dr. Ryll calls chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME). Most patients have read the historical novel of CFIDS called Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic (Hillary Johnson, Crown) and know about about the outbreaks in Lyndonville, NY and North Lake Tahoe in Incline Village, NV in the 1980's, but the first outbreak in modern times happened at the Los Angeles County Hospital in 1934 in the midst of a poliomyelitis epidemic. Osler's Web tells of A. G. "Sandy" Gilliam's 90 page monograph that the epidemiologist from the NIH wrote and how it was suppressed for four years by others at the NIH who believed the outbreak was a form of polio. Ryll says, "Patients who developed CFS became immune to polio." It occurred world-wide and epidemics have been described in schools, convents, hospitals and other contained populations. In suburban Sacramento, CA, an "epidemic of a communicable, apparent viral disease at the Mercy San Juan Hospital in Carmichael" occurred in 1975. Dr. Ryll was appointed to chair a committee to investigate this outbreak. The CDC (Centers for Disease Control, Communicable Disease Center) spent a week there. All cultures for known viruses were negative. A literature search f9ound ME to be very similar but did not mention the many vascular features that were witnessed. Dr. Ryll has followed these patients from this outbreak since 1975 making him the longest clinical investigator in the history of this country. He readily admits, "Because the complaints of patients ware 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."
Infectious venulitis (IVN), Dr. Ryll says, "Is frightening to patients because of its severity and its many, unusual features...panic is common and can be severe. Rarely, patients become psychotic and have hallucinations. But his is usually not a true psychosis -- they know it is not real. It is unlike Alzheimer's syndrome in which patients do not seem to have an awareness of their true state. Because of a frightening new disease that physicians cannot recognize, diagnose, or understand, and because it never seem 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."
Among the nervous system abnormalities found in IVN (CFIDS/ME) is dizziness that for some is a constant. Coordination becomes a problem and patients often will walk into doors or walls. Some faint and "small strokes are not uncommon...seizures can occur...patients drop items unexpectedly from their hands" as fine movement coordination is affected. Double vision and blurred vision occur and eye muscles do not always work properly. Tinnitus (ringing or noise in the ear) is common along with numbness and tingling of the extremities. the blood vessels are affected and flushing, cold extremities, blotchy rashes, dark areas under the eyes and skin pallow are seen. "Partial paralysis of the stomach and gastrointestinal tract" that results in nausea is common. Ryll says, "Pain and all aspects of this disease are made worse by exercise or attempting to behave normally." Indeed, he understands that "the discomfort of these patients is made worse by the hostility that they encounter from family, friends, associates, and physicians. Disbelieving and unsupportive spouses lead to martial stress or dissolution. Children become burned out and friends do not always want to hear that a patient does not feel well. Because patients have so often been told that nothing is physically wrong with them, they begin to believe that they are 'crazy'." Menses in women can cause relapses or, at the least, worsening of symptoms.
While there is still no conclusive test for this illness, Dr. Ryll finds an electomyogram is often abnormal indicating nerve damage. An MRI can often show evidence of demyelination (lesions to the myelin sheath that covers the brain) and a specialized SPECT scan "invariably shows impairment of brain blood circulation" while a PET can can indicate abnormal functioning of the brain. Many tests point to a viral infection and Dr. Ryll specifically points to muscle biopsies that "are often abnormal" although the muscles do not shrink or waste. "Treatments are geared to treating symptoms and making life more bearable and functional, as well as to modulate, or change the immune system so that it can better combat this disease," says Ryll. However, he adds that modulation of the immune system is expensive and insurance companies "are loath to pay for them." He suggests a positive outlook along with accepting the disease and living within the confines of its limitations. "Be as normal as you can, but do less of everything. Rest is essential and restorative...it is very important for you to have a firm diagnosis. If you know what you are up against, it is half the battle won."
After examining 5000 patients that were diagnosed with Fibromyalgia, Dr. Ryll found "all but about have had the chronic fatigue syndrome...in other words, Fibromyalgia is just one part of your disease." He points out the Fibromyalgia occurs with a variety of other illness and that viral diseases can cause Fibromyalgia. He finds no difference with those diagnosed with sick building syndrome. He has only seem two people who were diagnosed with Gulf War Illness and found both to have CFIDS/ME/IVN. "From the histories they gave, it also is a communicable disease, as is the chronic fatigue syndrome." Epstein-Barr Virus "is not the cause of your disease. It is reactivated by CFS, along with other common viruses...I believe that the pathosiology -- the damage -- is to the vascular system."
Dr. Ryll was invited to visit New Zealang by the University of Otago in 1984 when their was a widespread epidemic of ME (also called Tapanui Flu). Of those he examined, it was apparent that they had IVN, the same thing he was treating in the United States. He presented a research paper at the Interscience Conference for Antibiotics and Chemotherapy in Washington, D.C. that same year. The following year, two scientific papers were published on Epstein-Barr Virus although, eventually, all experts have agreed that this disease was not caused by EBV.
The National Cancer Institute (a division of the NIH) named a new virus in 1986 HBLV but it was renamed HHV6 (human herpes virus 6). Later, two different forms, A and B, were found. Was this the cause? Ryll writes, "This did not prove to be the case epidemiologically and this theory has been largely discarded at this time. It is possible that HHV6 plays some ancillary role, along with other viruses." What is the cause? "It could be a viral agent very difficult to cultivate...I, myself, believe that there is always a virus in residence." That is, indeed, what the National CFIDS Foundation, Inc. is determined to prove.
[Ed. Note: Information for this article was taken from the SJ CFIDS/ME/FMS Support Network's Snail Mail. They are located in Woodbridge, CA.]
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