MUS

The FASEB Journal • Editorial

“Chronic Lyme” and other medically unexplained syndromes

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

Last fall, Lyme disease, a tick-borne borreliosis, made

headlines in the business world: “Lyme Disease Guide-

lines Focus of Antitrust Probe.(2)” The attorney gen-

eral 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 ther-

apy 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 advo-

cates insisted that only vigorous, intravenous antibiotic

therapy can relieve “Lyme victims” of their chronic

pain, fatigue, and neurologic complaints. Diane Blan-

chard, of the Connecticut-based organization “Time for

Lyme,” complained that “These guidelines are becom-

ing 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 advo-

cacy 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 sup-

port 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” com-

plaints 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 suf-

fered from severe joint and muscle pain and very often

extreme fatigue. Later, after having a very strained

immune system, I developed allergies and multiple chem-

ical 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

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 en-

cephalitis,” “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 biochem-

ical 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 Fa-

tigue : 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 differ-

ent times with different frequencies: Society does not

invent symptoms; it retrieves them from the symptom pool

(6).

MEDICALLY UNEXPLAINED SYNDROMES

The British psychiatrist, Simon Wessely of King’s Col-

lege, 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 clini-

cal 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 unex-

plained syndromes (7).”

Others have debated whether it helps patients to

have labels such as “ﬁbromyagia,” “chronic Lyme dis-

ease,” “total chemical allergy,” or “chronic fatigue syn-

drome (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 begin-

ning, and not the end, of the therapeutic encounter (8).

That encounter does not include intravenous antibi-

otic therapy for medically unexplained syndromes.

ZEITGEIST IS AS ZEITGEIST DOES

Chronic fatigue syndromes are also found in children;

the condition might be called “Mu¨ nchhausen’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 intrave-

nous 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 ‘somato-

form’ 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

But patients with medically unexplained disease con-

tinue 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.

Gerald Weissmann

Editor-in-Chief

doi: 10.1096/fj.07-0201ufm

REFERENCES

1. Bierce, A. (1911) The Devil’s Dictionary (copyright expired) E-text

version by Aloysius West, April 15, 1993. http://www.alcy-

one.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.

Washington. p. 1

3. Zahran, H. S., Kobau, R., Moriarty, D. G., Zack, M. M., Holt, J.,

and Donehoo, R. (2005) Health-related quality of life surveil-

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1–35

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5. Name withheld (September 15, 2006) Letter to the Editor. The

Ottawa Citizen. Ottawa. p. B.4

6. Shorter, E. (1993) From Paralysis to Fatigue: A History of Psychoso-

matic Illness in the Modern Era. Free Press, New York

7. Wessely, S. (2003) Medically unexplained symptoms: exacerbat-

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8. Henningsen, P., Zimmermann, T., and Sattel, H. (2003) Medi-

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9. Rangel, L., Garralda, M. E., Levin, M., and Roberts, H. (2000)

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10. Nettleton, S. (2006) ‘I just want permission to be ill:’ towards a

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11. Reuters (February 22, 2000) Briton cures fatigue by drilling hole

in own head. London.

http://www.fasebj.org/cgi/reprint/21/2/299