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The Lyndonville Journal: The Onset Patterns of CFS David S. Bell, MD, FAAP Published in Lyndonville News, July 2001 The onset of CFS, like nearly every other aspect of this illness, has been a subject of debate over the years. There appear to be several ways CFS may begin. Do the differences in onset imply separate illnesses? Do the differences imply different prognoses? What would chemical exposure, viral infection and emotional stress have in common that could result in similar symptom patterns? In this piece I would like to explore the differing types of illness onset. The onset pattern most studied is the acute onset following a viral type of infection such as the flu or mononucleosis. In this scenario, a person has been in excellent health with no activity limitations, sometimes even being exceptionally healthy. There occurs a flu-like illness, usually unremarkable, with which the individual reluctantly acquiesces, but without concerns that it is anything more than a typical virus. Three or four days later there begins a slow improvement, followed by a return of symptoms with exhaustion being prominent. These symptoms then persist for months and years. While this pattern is by no means universal, it occurs with enough frequency that I would consider it the "classic" presentation. What is most interesting to me is that this viral illness seems to begin resolving, just as it should in a few days. Then for some reason, there is a turn for the worst, and CFS begins. Of course it is many months, sometimes years, before the diagnosis is made, but it can be traced back to a specific illness. Many people remember the specific day it began, a few remember the hour it began. Is there anything unusual about this initiating illness? It has been my belief that the degree of exhaustion in the first few days is greater than usual. However, this observation may be an artifact as the persistence of fatigue make people remember it more prominently, a phenomenon called recall bias. Some persons may have a typical flu, some an intestinal bug with nausea and vomiting. Some are said to have mononucleosis, and some really have mono. CFS has been seen after unusual infections, such as Psitticosis. It is possible that prolonged fatigue and neurologic symptoms following Lyme disease is not due to persistence of the Lyme organism, but is the CFS reaction after an initiating infection. Of interest, I have seen many persons who have come down with CFS following a flu-like illness shared by other family members where the family members recovered. One interesting series of studies has taken place in Australia where prolonged fatigue has followed Q fever, an infection rarely seen in the US. In these cases there was no doubt about the diagnosis of the initial illness, and appropriate therapy was begun. Yet instead of the normal, expected recovery, a prolonged debility persisted. In another Australian study, four different viral agents were identified by blood specimens that appeared to result in CFS. A variant of poliovirus has long been suspected as the cause of CFS. Thus it may be that there is no single agent that causes CFS, but instead multiple agents that initiate a process which results in CFS. If this is true, then identification of the abnormal process would result in a treatment. If this turns out to be true, who cares about what set it off? A variation of acute onset occurs. In this variation, persons develop numerous infections over weeks or months and seem to recover between episodes. Several sore throats, sinus infections, a walking pneumonia or two.... At first it seems coincidental, bad luck, and courses of antibiotics are given, sometimes younger persons loosing their tonsils to the hope of returning to an infection-free state. But the episodes continue and begin to coalesce; full recovery does not occur between episodes. Finally the symptoms become constant and CFS is established. This type of onset is interesting because it raises two questions. First, it may be that an individual's immune response is not normal, and that person is now more susceptible to sore throats and sinus infections. This has been assumed for many years in the study of CFS, and people frequently talk of their decreased immunity. Grocery stores now sell immune enhancers, whatever they are. I do not like this theory for the simple reason that serious or identifiable infections rarely occur. If someone's immune system was damaged to the degree that it caused recurrent viral infections, they should also develop big time (ie. real) infections such as abscesses, meningitis, and pneumonia. A second possibility: suppose for a moment that these episodes are not separate viral infections, but some other process that is beginning to become established. After all, what we diagnose as a sinus infection is not always due to a viral illness. It may be allergic, inappropriate production of cytokines, or some other process. Could it be possible that what we assume is a viral infection may not be related to a virus at all? In clinical medicine, physicians rarely delve into this point. After all, if someone comes into the office with a runny nose and fever, patients are unhappy if I say I have no idea what is causing the symptoms. Instead. I smile, say the magic word "infection" and write for an antibiotic, which sometimes actually helps. But suppose the mechanism that makes an Echovirus cause a cold is actually shared with something else. Is there a common denominator that underlies the symptoms we assume is due to a virus? The third onset type is the gradual onset. Here it impossible for an individual to date the beginning of the illness. Instead, over months or years there has been a gradual increase in fatigue and other symptoms, at first assumed to be stress, overwork, or depression. But when the degree becomes extreme or when there is no recovery with rest, the diagnosis of CFS is entertained. This type of CFS is discriminated against even more that the other types of CFS. It is one thing for a marathon runner to wake up one day and be unable to get out of bed, in comparison to a person that slowly, without apparent reason gets more and more run down. Persons with the gradual onset also adjust over the months. Their illness is coming on gradually and they take steps, cutting down on certain activities or taking more rests. They do not experience the sudden shock of the acute onset where there is no doubt that some illness has occurred. A fourth type of CFS onset includes the stragglers with onset descriptions that are diverse, yet still result in the symptom pattern characteristic for CFS. Some persons develop CFS after a head injury, some after exposure to paint or other chemical fumes. CFS has been described as a consequence of organophosphate poisoning and ciguatera poisoning, but I find I rarely ask my patients if they may have eaten Carcharhinus in Madagascar before they became ill. One patient I saw had CFS following a clear-cut case of lead poisoning. To illustrate some of the unusual presentations, I relate the stories of three athletes. Case 1: T. M. had been an avid swimmer for many years. It was his hope to compete in the Olympic tryouts next year. He had several strokes in which he was proficient, but he decided to work on the backstroke. His coach considered him a good prospect for making the Olympic team. He had the strength, stamina, and emotional fortitude of an Olympic swimmer. For months he practiced and trained, making good progress. His time for one hundred meters steadily improved and was coming into the range that made Olympic trial a realistic possibility. One afternoon, he was about halfway through his practice and he noticed an unusual aching in his muscles. He got out of the pool, not even winded, to see what was happening. His upper arms ached, something that had never happened to him before, and because his workout was not particularly difficult that day, could not be explained by over exercising. He finished his workout but took it easy wondering if he could be coming down with the flu or something. By the next morning he was feeling well, and went to the pool in the afternoon. Again he noticed the aching in his muscles, and a sensation of heaviness. He continued his workout as his muscles seemed to work perfectly well, they just felt achy. He would not miss a workout with something as trivial as this and ignored the muscle symptoms. The aching occurred daily for a week, gradually becoming worse. He took several days off thinking that he was overworking his muscles, but it did not change. But otherwise he felt completely well. Roughly ten days after the muscle pains started, he came down with the flu. It evolved into CFS and he was confined to house for nearly a year. Now he occasionally swims for relaxation, but thoughts of an Olympic medal have long since left his dreams. Case 2: Alex was a runner, not fantastic, but in the semi-serious league. One day he woke not feeling very well, but decided to take his normal four or five mile jog. What was so remarkable about that jog was that he had to stop every half mile and find someplace to pass his urine. Because he was a city dweller, this represented quite a challenge, and had never happened before. After the run, he felt worse, assuming he was developing the flu. He became very ill, and has not recovered over the past eight years. Case 3: Adam was a cross country skier, and one day while crossing a lake fell through the ice and became chilled. He was able to return home, hypothermic, and began to feel ill. In the next twelve years he has not had a single day where he has felt well. Over the years, I have tried to piece together the onset type with the clinical course and found it difficult. The medical literature on this subject is not particularly helpful except that there are other, well known illnesses where the cause is known and the onset is as varied as in CFS. In the next installment I will try to tackle these with the aim of presenting similarities. Return to the Lyndonville News Archive |
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