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"Chronic Lyme" and other medically unexplained syndromes

	INTRODUCTION

TOP INTRODUCTION ANTI-TRUST AND THE TICK FROM PARALYSIS TO FATIGUE MEDICALLY UNEXPLAINED SYNDROMES ZEITGEIST IS AS ZEITGEIST... LIKE A HOLE IN... REFERENCES

 
Diagnosis, n. A physician’s forecast of the disease by the patient’s pulse and purse.

—Ambrose Bierce, The Devil’s Dictionary, 1911 (1)

	ANTI-TRUST AND THE TICK

TOP INTRODUCTION ANTI-TRUST AND THE TICK FROM PARALYSIS TO FATIGUE MEDICALLY UNEXPLAINED SYNDROMES ZEITGEIST IS AS ZEITGEIST... LIKE A HOLE IN... REFERENCES

 
Last fall, Lyme disease, a tick-borne borreliosis, made headlines in the business world: "Lyme Disease Guidelines Focus of Antitrust Probe.(2) " The attorney general of Connecticut threatened to invoke anti-trust laws against The Infectious Diseases Society of America, of which a good number are also members of FASEB. It seems that the Society had issued a set of evidence-based guidelines for the treatment of Lyme disease, which discouraged use of intravenous antibiotic therapy for the late, nonspecific, neurological symptoms of "chronic Lyme disease."

The infectious disease experts noted that:

In many patients, post-treatment symptoms appear to be more related to the aches and pains of daily living rather than to either Lyme disease or a tickborne coinfection. Put simply, there is a relatively high frequency of the same kinds of symptoms in "healthy" people (3) .

But a few self-proclaimed experts and a vociferous group of Lyme disease advocacy groups argued that medical science has it wrong and that the establishment is denying treatment to desperate patients. The advocates insisted that only vigorous, intravenous antibiotic therapy can relieve "Lyme victims" of their chronic pain, fatigue, and neurologic complaints. Diane Blanchard, of the Connecticut-based organization "Time for Lyme," complained that "These guidelines are becoming the de facto standard of care and that is not OK. We are all guinea pigs at this point. Why would anyone think they have all the answers? It’s not right. (2) " There’s money at stake—since the guidelines have been endorsed by the Centers for Disease Control and Prevention, insurers will be unlikely to pay for i.v. antibiotics.

The attorney general responded to the Lyme advocacy position in business-like fashion, holding that "These guidelines were set by a panel that essentially locked out competing points of view. Presumably, the IDSA is a non-profit making organization, but such organizations can still be used for anti-competitive purposes (2) ."

He invoked the antitrust laws, and the case is still open. In fact, the panel of medical scientists had already looked into "competing points of view." Citing properly controlled studies, the panel found no support for the use of long-term, potentially dangerous antibiotic therapy in the absence of objective physical signs or lab abnormalities. They noted that population-based surveillance in the United States indicated a mean of 6.1 self-reported unhealthy days during the preceding month (3) . They concluded:

Thus, the presence of arthralgia, myalgia, fatigue, and other subjective symptoms after treatment for Lyme disease must be evaluated in the context of "background" complaints in a significant proportion of individuals (4) .

This sort of "background" is illustrated by a case-report written by the complainant herself in a letter to the editor of a Canadian newspaper:

I had a flu-like illness with severe fatigue, muscle pain, fever and chills....It lingered on and on for weeks, then months, then years. There was always chronic pain and debilitating fatigue that made it impossible to keep working. The diagnosis was fibromyalgia and later chronic fatigue syndrome. ...During those years, I suffered from severe joint and muscle pain and very often extreme fatigue. Later, after having a very strained immune system, I developed allergies and multiple chemical sensitivities. Today, 22 years later, after having a blood test sent to a California lab along with a history of my symptoms, Lyme disease has been confirmed (5) .

There is, of course, no way for a California lab to have made the diagnosis of Lyme disease on the basis of a blood test 22 years after a flu-like syndrome, even when provided with a "history of my symptoms." No tickee, no washee as they used to say before Ixodes dammini or Borrelia burgdorferi were on the map.

	FROM PARALYSIS TO FATIGUE

TOP INTRODUCTION ANTI-TRUST AND THE TICK FROM PARALYSIS TO FATIGUE MEDICALLY UNEXPLAINED SYNDROMES ZEITGEIST IS AS ZEITGEIST... LIKE A HOLE IN... REFERENCES

 
Alas, diagnoses such as chronic Lyme disease, based on the pulse of the time and the purse of the patient, are far too common these days. Groups of patients and advocates march against medical science under the banners of "chronic fatigue syndrome," "myalgic encephalitis," "irritable bowel syndrome," "total chemical allergy," etc. There is no question that patients suffer—and often terribly—from conditions to which these labels have been given. There is also no question that their disability is real. Skeptics worry, however, that the hallmark of these "diseases" is that diagnosis requires the complete absence of objective physical or biochemical derangement. They wonder whether such patients are not really victims of a complex set of socially and medically constructed diseases—much as the "railway spine," "chronic appendicitis," or "female hysteria" favored by 19th century clinicians. These doubts are summarized in Edward Shorter’s From Paralysis to Fatigue : A History of Psychosomatic Illness in the Modern Era":

Although the amplification of normal bodily symptoms and phobias about disease have existed in all times and places, it is this delusional clinging to the belief in a given illness, that marks the last decades of the twentieth century (6) .

Shorter is persuaded that social templates shape medical fashion and that medical fashion shapes the symptoms that patients select. Those symptoms—such as fatigue, weakness, tinglings, insomnia, etc.—could, of course, be produced by organic disease; that’s exactly why they tug so hard at our diagnostic sleeve. The victim of chronic Lyme disease is in very real pain—but of the mind—and the mind chooses symptoms that will be taken as evidence of physical disease and that will win the patient an appropriate response:

Thus most of the symptoms ... have always been known to Western society, although they have occurred at different times with different frequencies: Society does not invent symptoms; it retrieves them from the symptom pool (6) .

	MEDICALLY UNEXPLAINED SYNDROMES

TOP INTRODUCTION ANTI-TRUST AND THE TICK FROM PARALYSIS TO FATIGUE MEDICALLY UNEXPLAINED SYNDROMES ZEITGEIST IS AS ZEITGEIST... LIKE A HOLE IN... REFERENCES

 
The British psychiatrist, Simon Wessely of King’s College, London, argues that most medical specialties define unexplained syndromes in the technical terms of their own specialty. Presented with the same cluster of symptoms by a patient, what a rheumatologist will call "fibromyalgia," a gastroenterologist would diagnose as "irritable bowel syndrome," while a neurologist might come up with "chronic fatigue syndrome," and a dabbler in infectious disease would label it as "chronic Lyme disease." Wessely provides convincing evidence that none of these monickers describes a unique clinical entity. Indeed, each syndrome shares much with all the others: muscle weakness, arthralgias, and overall fatigue— the repertoire of symptoms in "chronic Lyme disease." Skip the label, Wessely advises, it’s better to describe these conditions, honestly, as "medically unexplained syndromes (7) ."

Others have debated whether it helps patients to have labels such as "fibromyagia," "chronic Lyme disease," "total chemical allergy," or "chronic fatigue syndrome (CFS)" pinned on their ills. Henninsen et al. have suggested that:

The answer to the question of "to label or not to label" may turn out to depend not on the label, but on what that label implies. It is acceptable and often beneficial to make diagnoses such as CFS, provided that this is the beginning, and not the end, of the therapeutic encounter (8) .

That encounter does not include intravenous antibiotic therapy for medically unexplained syndromes.

	ZEITGEIST IS AS ZEITGEIST DOES

TOP INTRODUCTION ANTI-TRUST AND THE TICK FROM PARALYSIS TO FATIGUE MEDICALLY UNEXPLAINED SYNDROMES ZEITGEIST IS AS ZEITGEIST... LIKE A HOLE IN... REFERENCES

 
Chronic fatigue syndromes are also found in children; the condition might be called "Münchhausen’s fatigue by proxy." A British study found that children are most likely to develop CFS in the autumn term when they start secondary school: seventy-six percent of children developed CFS between September and December. On average, the children, who were otherwise healthy, were 11 years-old when the illness began, coinciding with the move to secondary school (9) . Since infective diseases in childhood are far more common in kids from poor families, it was noteworthy that most of the sufferers of childhood CSF were from "higher socio-economic" (i.e., rich) families. That seems to be true for most other medically unexplained physical syndromes, such as chronic Lyme disease. Indeed, the direct correlation between income and fatigue syndromes is an argument for the social-construction hypothesis vs. the usual "infective" or "somatic" etiology of these troubling conditions (8) . Score one for the Infectious Disease experts: social construction is not amenable to intravenous antibiotic therapy.

Shorter explained the historical patterns into which those unexplained syndromes fall; patients tend to introject the bad dreams of their Zeitgeist, paralysis in the old days of syphilis, fatigue in the era of AIDS (6) . He warns doctors not to regard "patients with ‘somatoform’ symptoms as bizarre objects but as individuals who enjoy the dignity that all disease confers." On the other hand, doctors tend to be impatient with those who come to them with inexplicable symptoms. No tick, no fever, no rash, no changes in the spinal fluid equals no disease, they feel. No wonder doctors are often at odds with their patients, who, in the words of Sarah Nettleton of York University, "just want permission to be ill:"

Indeed, society does not readily grant permission to be ill in the absence of disease....an appreciation of the experience of such embodied doubt articulated by people who live with medically unexplained diseases may have a more general applicability to the analysis of social life under conditions of late modernity (10) .

	LIKE A HOLE IN THE HEAD

TOP INTRODUCTION ANTI-TRUST AND THE TICK FROM PARALYSIS TO FATIGUE MEDICALLY UNEXPLAINED SYNDROMES ZEITGEIST IS AS ZEITGEIST... LIKE A HOLE IN... REFERENCES

 
But patients with medically unexplained disease continue to suffer, each in the fashion of the day, each in search of the most radical remedy, be it cauteries or antibiotics. Perhaps the saddest response to pain sans disease was reported a while ago by Reuters:

"Briton Cures Fatigue by Drilling Hole in Own Head. February 22, 2000. LONDON (Reuters)—A British woman says she has cured her chronic fatigue by resorting to do-it-yourself brain surgery and drilling a hole in her own head. Heather Perry, 29, performed the ancient technique of trepanning, cutting away a section of the scalp and drilling into the skull (11) .

Perry tried to rid herself of her chronic fatigue syndrome by drilling a two centimeter hole in order "to permit blood to flow more easily around the brain." But the operation went wrong when she drilled too far and penetrated the dura mata. British doctors had refused to help Perry with the ancient procedure, so she flew to an unnamed location in the United States, where she was given medical advice and then did it herself. She said the 20-minute operation had improved her quality of life.

I have no regrets. I was prone to occasional bouts of depression and felt something radical needed to be done, said Perry, who performed the operation under local anaesthetic in front of a mirror and a camera crew. (What a segment for TV! On to Oprah or Larry King) I felt the effects immediately, I can’t say they have been particularly dramatic but they are there. I generally feel better and there’s definitely more mental clarity. I feel wonderful (11) .

Trepanning for fatigue has as little support in science as the intravenous antibiotic therapy urged on the Attorney General of Connecticut, but it does have the advantage of not adding to the expenses of Britain’s National Health Service or American insurers. The Devil’s Dictionary requires revision: nowadays diagnosis falls under the anti-trust laws, while the pulse and the purse are those of the public.

View larger version (153K): [in this window] [in a new window]   Figure 1. Rudolph Leuckart: "Arthropoda" Wallchart from MBLWHOI. Printed with permission.

	FOOTNOTES

 
The opinions expressed in editorials, essays, letters to the editor, and other articles comprising the Up Front section are those of the authors and do not necessarily reflect the opinions of FASEB or its constituent societies. The FASEB Journal welcomes all points of view and many voices. We look forward to hearing these in the form of op-ed pieces and/or letters from its readers addressed to journals@faseb.org.

	REFERENCES

TOP INTRODUCTION ANTI-TRUST AND THE TICK FROM PARALYSIS TO FATIGUE MEDICALLY UNEXPLAINED SYNDROMES ZEITGEIST IS AS ZEITGEIST... LIKE A HOLE IN... REFERENCES

 

1. Bierce, A. (1911) The Devil’s Dictionary (copyright expired) E-text version by Aloysius West, April 15, 1993. http://www.alcyone.com/max/lit/devils/. Accessed December ,2006
2. Hamilton, E. (November 17, 2006) Lyme Disease Guidelines Focus Of Antitrust Probe. Knight Ridder Tribune Business News ,1 Washington.
3. Zahran, H. S., Kobau, R., Moriarty, D. G., Zack, M. M., Holt, J., Donehoo, R. (2005) Health-related quality of life surveillance—United States, 1993–2002. MMWR Surveill. Summ. 54,1-35[Medline]
4. Wormser, G. P., Dattwyler, R. J., Shapiro, E. D., Halperin, J. J., Steere, A.C., Klempner, M. S., Krause, P. J., Bakken, J. S., Strle, F., Stanek, G., et al (2006) The clinical assessment, treatment, and prevention of Lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America. Clin. Infect. Dis. 43,1089-134[CrossRef][Medline]
5. . Name withheld (September 15, 2006) Letter to the Editor. The Ottawa Citizen ,B.4 Ottawa.
6. Shorter, E. (1993) From Paralysis to Fatigue: A History of Psychosomatic Illness in the Modern Era Free Press New York.
7. Wessely, S. (2003) Medically unexplained symptoms: exacerbating factors in the doctor-patient encounter. J. R. Soc. Med. 96,223-227[Free Full Text]
8. Henningsen, P., Zimmermann, T., Sattel, H. (2003) Medically unexplained physical symptoms, anxiety, and depression: a meta-analytic review. Psychosom Med. 65,528-533[Abstract/Free Full Text]
9. Rangel, L., Garralda, M. E., Levin, M., Roberts, H. (2000) The course of severe chronic fatigue syndrome in childhood. Proc. R. Soc. Med. 93,129-134
10. Nettleton, S. (2006) ‘I just want permission to be ill:’ towards a sociology of medically unexplained symptoms. Soc. Sci. Med. 62,1167-1178[CrossRef][Medline]
11. . Reuters (February 22, 2000) Briton cures fatigue by drilling hole in own head London.

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