ARTICLE IN PRESS

Social Science & Medicine 62 (2006) 577–590

www.elsevier.com/locate/socscimed

Illnesses you have to fight to get:

Facts as forces in uncertain, emergent illnesses
Joseph Dumit
Program in Science, Technology & Society, Massachusetts Institute of Technology, E51-296D MIT, Cambridge, MA 02139-4307, USA

Available online 8 August 2005

Abstract

Chronic fatigue syndrome and multiple chemical sensitivity are two clusters of illnesses that are pervaded by medical,
social and political uncertainty. This article examines how facts are talked about and experienced in struggles over these
emergent, contested illnesses in the US. Based principally on a large archive of internet newsgroup postings, and also on
fieldwork and on published debates, it finds that (1) sufferers describe their experiences of being denied healthcare and
legitimacy through bureaucratic categories of exclusion as dependent upon their lack of biological facts; (2) institutions
manage these exclusions rhetorically through exploiting the open-endedness of science to deny efficacy to new facts; (3)
collective patient action responds by archiving the systematic nature of these exclusions and developing counter-tactics.
The result is the maintenance of these very expensive struggles for all involved.
r 2005 Elsevier Ltd. All rights reserved.

Keywords: Chronic illness; Chronic fatigue syndrome; Multiple chemical sensitivity; Uncertainty; Social movements; United states;
Access to care

Introduction (MCS), the resulting judgement may be that despite

More and more people are slipping through normal-
ized gaps in the social safety network. (Beck, 1992,
135)
We don’t even have a code for this disease, so we’re
not going to pay you. (Johnson, 1996)
Access to healthcare in the US is increasingly
restricted through bureaucratic means. Doctors, the
traditional adjudicators of whether or not someone is
sick and in need of care often must listen first to what an
employer, health maintenance organization, or insurer
decides is a coverable event before rendering a judge-
ment (Scott, 2000; Starr, 1982; Walsh, 1987). In the case
of emerging uncertain illnesses like chronic fatigue
syndrome (CFS) and multiple chemical sensitivity
Tel.: +1 617 253 8781 (office); fax: +1 617 258 8118.
E-mail address: dumit@mit.edu.
symptoms, there is no care that can be offered. This
judgement in turn impugns the person’s legitimacy to
make a claim and to be suffering, denying them the sick
role altogether (Clarke & James, 2003; Glenton, 2003;
Matthews, 1998; Simon, Katon, & Sparks, 1990).
Based on fieldwork, newsgroup postings, and pub-
lished discussions on CFS and MCS, this article
examines ways in which sufferers, doctors, and institu-
tions use facts in situations where judgements of illness
take place. First I analyze the contexts in which
institutional codes and doctor–patient interaction com-
bine to produce ‘‘symbolic domination’’ (Melucci,
1996a), especially as discussed on the internet. Patients
experience these encounters as a system in which they
must ‘‘prove’’ their illness and their suffering through
mobilizing facts. Doctors, government and insurance
agencies appear to patients to be unable to hear their
claims, denying them a social sick role and rendering

0277-9536/$ - see front matter r 2005 Elsevier Ltd. All rights reserved.
doi:10.1016/j.socscimed.2005.06.018
 ARTICLE IN PRESS
578 J. Dumit / Social Science & Medicine 62 (2006) 577–590
them ‘‘just plain crazy.’’ I then turn to collective action
online, to track how the very systemic nature of
healthcare denial can be archived, discussed, and used
to create tactics of the weak in response to symbolic
domination. These tactics include collective persever-
ance, creative use of existing categories, and deploying
available counter-facts within the rules of the system.
This is not a general solution, but allows some suffers to
live better within current institutions some of the time.
In each of these situations, biomedical facts play
crucial roles in persuading participants how to render
judgements. At the same time, because of the pervasive
uncertainty of the illnesses, the facts themselves are
susceptible to being framed and reframed by the
participants (Kroll-Smith, Brown, & Gunter, 2000;
Gabe, Kelleher, & Williams, 1994; Brown & Mikkelsen,
1990) Facts, in other words, because they are supposed
to settle matters of who is sick and what care is
appropriate, become instead forces deployed by partici-
pants in attempts to emplot and counter-emplot each
other (Dumit, 2000; Good, Munakata, Kobayashi,
Mattingly, & Good, 1994).
CFS (Sabin, 2003; Wessely, Hotopf, & Sharpe, 1998)
and MCS (Kroll-Smith & Floyd, 2000; Matthews, 1998)
are each clusters of illnesses whose status varies
historically and by country and institution. They are
characterized as ‘‘distinguished by great uncertainty
regarding aetiology, diagnostics, treatment and prog-
nosis’’ (Asbring & Narvanen, 2003, on CFS). They are
emergent illnesses in the sense that they are researched,
discussed, and reported on, but no aspect of them is
settled medically, legally, or popularly. They are serious,
fraught conditions not only for the persons afflicted, but
also for the thousands of physicians, families, research-
ers, corporations, insurance and administrative agencies
having to deal with them. Thus despite the very different
character, histories, and meanings, CFS and MCS share
a number a number of cultural, political and structural
characteristics that should be separated and studied
(adapted from Dumit, 2000):
1. They are chronic conditions and share with other
chronic conditions the difficulty of fitting acute
disease models of treatment, the sick role, and the
determination of health care costs (Cassell, 1997;
Glenton, 2003).
2. They are ‘‘biomental’’: their nature and existence are
contested as to whether they are primarily mental,
psychiatric, or biological. They are causally undeter-
mined: their etiology is likewise contested as to social,
genetic, toxic and personal possibilities (Shorter,
1992; Showalter, 1997; Heuser, Mena, & Alamos,
1994; Hyde, Goldstein, & Levine, 1992).
3. They are therapeutically diverse: the nature and
reimbursement of competing therapies, including
alternative medicine is wide open (Wessely et al.,
1998).
4. They have fuzzy boundaries and are each cross-
linked to other emergent illnesses as subsets, mis-
taken diagnosis, and comorbid conditions.
5. They are legally explosive: each condition is caught
up in court battles, administrative categorization and
legislative maneuvering. Disability status, for in-
stance, is haphazardly applied. Therefore they are
highly contested: the stakes are high, and many of the
players have significant resources (Matthews, 1998).
A key concern in research on contested, uncertain
illnesses is the intense interplay between diagnosis and
legitimacy: without a diagnosis and other forms of
acceptance into the medical system, sufferers are at risk
of being denied social recognition of their very suffering
and accused of simply faking it (Clarke & James, 2003;
Jackson, 2000; Lillrank, 2003; Ware & Kleinman, 1992).
They require tremendous amounts of ‘‘hard work’’ by
patients to achieve diagnosis and acknowledgement
(Werner & Malterud, 2003). The amount of constant
struggle suggests that these emergent, contested illnesses
can best be described as ‘‘illnesses you have to fight to
get.’’ Social studies of medicine have discussed this
contest in terms of medicalization (cf. Conrad, 1992),
and now biomedicalization (Clarke and James, 2003),
each of these terms denoting a field of contention
(Crossley, this issue) best summarized by Klawiter:
From three decades of scholarship on medicalization,
we know that medicalization is a contested process,
that it involves collective organizing and strategic
claims-making across multiple arenas, and y a wide
array of social actorsy Medicalization is not an
absolute—not an either/or process—but a matter of
degree, and that it quite often results in hybrid
syndromes, or conditions, that are medicalized along
one dimension but not along others. (Klawiter, 2002,
p. 313)
CFS and MCS are both incompletely biomedicalized
and the degree varies greatly in the US, by state,
company, and institution (Dumit, 2000; Kroll-Smith &
Floyd, 2000; Matthews, 1998; Wessely et al., 1998). With
these emergent, contested illnesses, the social problem is
the apparently intractable uncertainty at each dimen-
sion. There is often not enough research and at the same
time too many facts. The fights over definitions,
diagnosis, response and prevention thus depend dis-
proportionately on this small amount of research, much
of it underfunded. ‘‘Everyone is calling for more studies:
the ones that are done have many problems, most
attributable to the fact that there has been limited
funding and they have been done on ‘shoestring’
budgets’’ (Miller, 1994, p. 266). Different parties read
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J. Dumit / Social Science & Medicine 62 (2006) 577–590
the same uncertain facts in opposing ways. Akin to the
struggles over the precautionary principle, taking a
stand on uncertainty is a constant political struggle. In
the absence of definitive answers, the fights thus depend
upon the ability to control the questions and the venues.
For each of these relations, this article examines the
ways in which facts, categories and codes are invoked,
framed, and defended across venues with different
efficacies, and the counter-tactics that can be brought
to bear against these frames.
Challenging codes and losing
Accounting for illnesses under biomedicine requires
attending to both the ways in which scientific facts are
circulated and used, and the ways in which the same
facts are socially and economically controlled, con-
tained, and exploited. Because the American biomedical
system demands disease categories before compensation,
and diagnosis before treatment, control of the codes can
create situations where there are rules for ‘‘no code’’:
explicit instructions that certain forms of suffering are
illegitimate and therefore not-suffering at all. This is a
form of what Alberto Melucci (Melucci, 1996a) has
called ‘‘symbolic domination,’’ domination by informa-
tion and symbols, categories, and bureaucracies. This is
in addition to the already difficult situation of managing
legitimate chronic illnesses.
Many people who are very ill and disabled are
abandoned out of reach of any social safety net.
People who are ill or disabled without a medical
diagnosis are not eligible for the social programmes
they may need in order to survive. Surprisingly many
of them are also abandoned by friends and families.
Typically, one woman said, ‘My friends and family
saw me so sick and they knew I was sick but because
the doctors couldn’t come up with a name, they’d say
‘maybe it is all in your head’ or ‘If the doctors can’t
find anything, it can’t be too serious’ (Deringer, 1992,
p. 87). (Wendell, 1996, p. 130)
The chain of events described by Wendell and
Deringer is quite tragic. Because doctors can’t name
the illness, everyone—the patient’s family, friends,
health insurance, and in many cases the patient—comes
to think of the patient as not really sick and not really
suffering. What the patient comes to require in these
circumstances, in the absence of help, are facts—tests
and studies that show that they might ‘‘in fact’’ have
something.
CFS and MCS are ‘‘emergent’’ and ‘‘contested’’
illnesses precisely because they have names but not
codes. When researchers want to promote an illness,
they strive above all to establish that illness within
579
institutions, including insurance companies, social se-
curity, and the International Classification of Diseases
(ICD) standard. One of the key researchers for
‘metabolic syndrome’ Yehuda Handelsman, stated,
‘‘Nothing helped metabolic syndrome more than the
establishment of the ICD9 code.’’ The pharmaceutical
marketer reporting this history reinforced this claim, ‘‘In
a world in which a condition isn’t really a disease until it
becomes part of physicians’ paperwork, metabolic
syndrome had crossed an important threshold’’ (Breit-
stein, 2004).
Unfortunately, at this point there are no conclusive
biomarkers, tests or consensual objective criteria for
defining CFS or MCS. In the mid-1980s, families and
friends of CFS sufferers, as part of a large coalition of
health advocacy groups, successfully lobbied congress to
include specific items in its appropriations bill. Among
them was a mandate for the Center for Disease Control
(CDC) to study the nature and extent of Chronic
Fatigue or Epstein–Barr Syndrome. The CDC did so
and produced a statement declaring that Chronic
Fatigue was a very non-specific illness and sufferers
had at least six to eight of an open-ended list of
symptoms. Furthermore, the CDC found that CFS was
lacking in objective evidence and seemed to come and go
in people without a discernable pattern (see Wessely et
al., 1998, Chapter 7 for a history of changing CFS
definitions). The current CDC definition reads:
Clinically evaluated, unexplained chronic fatigue
cases can be classified as chronic fatigue syndrome
if the patient meets both the following criteria: (1)
Clinically evaluated, unexplained persistent or relap-
sing chronic fatigue that is of new or definite onset
(i.e., not lifelong), is not the result of ongoing
exertion, is not substantially alleviated by rest, and
results in substantial reduction in previous levels of
occupational, educational, social, or personal activ-
ities. (2) The concurrent occurrence of four or more
of the following symptoms: substantial impairment in
short-term memory or concentration; sore throat;
tender lymph nodes; muscle pain; multi-joint pain
without swelling or redness; headaches of a new type,
pattern, or severity; unrefreshing sleep; and post-
exertional malaise lasting more than 24 hours. These
symptoms must have persisted or recurred during 6
or more consecutive months of illness and must not
have predated the fatigue. (Center for Disease
Control, 2003)
Reactions throughout the history of definitions by the
CFS community on and offline were mixed, but in
general they were not happy with the ongoing un-
certainty. They wanted something much more definite,
positive, and biological. For instance, a number of
Chronic Fatigue sufferers claim disability before the
 ARTICLE IN PRESS
580 J. Dumit / Social Science & Medicine 62 (2006) 577–590
Social Security Administration. Routinely they are
denied. If the claimants appeal, they are eventually
granted a hearing by an Administrative Law Judge who
is officially independent of Social Security, but assigned
to it. This judge can subpoena witnesses, hear evidence,
and make a decision on cases. Usually, it appears (no
good records are kept), the CFS sufferer is denied
disability on the grounds that no objective medical
evidence is presented, the symptoms are subjective, and
CFS adequately defined. These actions by the Social
Security Administration were codified in a specific
exclusion for CFS in its 1999 guidelines (quoted here
in its most recent form):
Although you may reach a diagnosis of CFS on the
basis of your patient’s symptomatology (after ruling
out other disorders), the Social Security law requires
that a disabling impairment be documented by
medically acceptable clinical and laboratory findings.
Statements merely recounting the symptoms of the
applicant or providing only a diagnosis will not
establish a medical impairment for purposes of Social
Security benefits. We must have reports documenting
your objective clinical and laboratory findings.
(Social Security Administration, 2001)
Following these denials, if the sufferer has the
resources and the stamina, he or she can eventually
appeal to a Federal District Court. Here, in over
fourteen published cases, the court overturns the
rejection using the CDC findings as ‘‘published objective
diagnostic criteria.’’ Ignored by the Social Security
Administration, the same set of facts is accepted by
the Appeals court. This might be called a tragic victory
because the Social Security Administration is legally
able to ignore these Appeals court decisions in future
cases, and therefore each person must go through the
lengthy process of rejection and appeals each time.
In one case for instance, the appeals court argued that
it is not surprising that the physicians were unable to pin
down the condition to a specific cause, ‘‘chronic fatigue
syndrome is a debilitating immunological disorder
which is frequently difficult to diagnose,’’ and, there is
no objective test for it. Finally, the court argues, the
absence of a pattern to the symptoms is in fact an
undeniable characteristic of CFS and the reason why it
is so debilitating. The CDC’s published statement that
Chronic Fatigue is difficult to pin down, ironically
becomes in the appeals court, an objective standard that
defines Chronic Fatigue Syndrome precisely. It is a
biological disorder that is non-objective, varying in time,
subjective, and ambiguous.
A further institutional response to the uncertainty of
CFS comes from industry. In a series of maneuvers,
insurance companies and disability carriers have peti-
tioned for permission to specifically target illnesses like
CFS and MCS with exclusions.
UNUM Life Insurance Co. of America, the nation’s
largest group disability carrier, has received approval
in 39 states for a two-year benefit limit for ‘‘self-
reported’’ symptoms, or illnesses where tests fail to
identify an underlying cause, and applications are
pending in the remaining statesy
MetDisAbility, a division of Metropolitan Life
Insurance Co. in New York, plans to introduce a
two-year limit for chronic fatigue syndrome and back
and joint sprains and strains that don’t have a
specific diagnosis to its group disability product
within the next few months. Cigna Group Insurance,
a subsidiary of Cigna Corp. in Philadelphia, is
developing contract language that would put a one-
year or two-year benefit cap on ‘‘self-diagnosed’’
illnesses, says Eric Reisenwitz, a senior vice president
for managed disability at Cigna Group Insurance.
(Jeffrey, 1996)
Not surprisingly, the illness communities viewed this
as a direct assault on the fact that science has not yet
been able to pin down a biological marker for CFS or
MCS. They point out in postings that the top mental
illness researchers admit that ‘‘There are at present no
known biological diagnostic markers for any mental
illnesses except dementias such as Alzheimer’s disease’’
(Andreasen, 1997, 1586). Sufferers note that uncertainty
for these illnesses does not keep them from being treated
as real and coverable.
For the institutions of insurance and social security,
the fight is over defining proper illness categories. This a
contest over abnormality that can be contrasted to
contests over normality wherein patients fight for their
humanity despite their (acknowledged) illnesses (N.
Crossley, this issue; Epstein, 1996; Rabeharisoa, this
issue).1 In these cases, symbolic domination takes the
form of denying the ability to make a claim and present
an illness. Sufferers can no longer say ‘‘I am in pain’’ to
their doctors, experience is no longer a fact before these
insurance companies. The long transition of the patient
from mostly subject to completely object is finally
closed; epistemic invalidation of experiential claims is
codified (Engelhardt, 1986; Wendell, 1996, pp. 122–128;
Nelson & Worth, 1994). One must have laboratory signs
in order to be suffering; one must suffer in code in order
to be suffering in fact, or one does not suffer at all.
Those who live with CFS or MCS face the doubled
problems of obtaining recognition of their suffering
while also getting help for their ongoing symptoms.
Given the ongoing active denial of their illness
categories, sufferers develop collective understandings
1
This and further formulations about abnormality are thanks
to Kyra Landzelius in conversation.
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J. Dumit / Social Science & Medicine 62 (2006) 577–590
of how they are systematically excluded and fact-tactics
to engage family, friends, doctors and institutions (de
Certeau, 1984). Ulrich Beck and others describe living in
contemporary society as requiring a reflexive ‘‘do it
yourself’’ approach to one’s biography. Collective
discussions provide examples of these ‘‘construction kits
of biographical combinations’’ (Beck, 1992, p. 135). For
example, Mary Katzenstein describes important work
being done by women in women’s movements as
‘‘rewriting, through language and symbolic acts, their
own understanding of themselves in relation to society’’
(quoted in Taylor 6–7). One place where we can directly
see this active, reflexive theorizing of society and their
place in it, is on the internet, where these illness
movements have websites and Usenet discussion groups.
In the remainder of this article, I use online discussions
among sufferers to examine how they have learned to
live and talk strategically, within medical systems that
have no codes for them.
Methods
This article is part of a larger project on contested
illnesses involving fieldwork, informal interviews, in-
tensive newsgroup analysis, and published writing
research. The bulk of data for this article comes from
an archive of over 100,000 USENET newsgroup
postings. USENET is an internet form of communica-
tion that functions like a cross between a bulletin board
and email in which messages are sent, or posted, to a
named group and through a series of digital relays,
persons online anywhere can download and read these
postings. The postings are thus public commentary with
no access restrictions and are most similar to online
weblogs (or blogs). No consent was sought for these
public postings. There are over 30,000 newsgroups and
millions of messages per day (Eysenbach & Wyatt,
2002). Working with Warren Sack (at the MIT Media
Lab), I obtained archives of two newsgroups, alt.med.cfs
and alt.support.mcs where discussions of chronic fatigue
syndrome and multiple chemical sensitivity took place.
We obtained these archives from Dejanews (now
GoogleGroups).
Whereas most analysis of online lists and postings
concentrates on small archives of 10–100 postings, we
had over 60,000 each year for three years of each group,
1997–1999 and selected postings before and after this
period. Our interest was in what Sack has termed ‘‘very
large-scale conversations’’ in which hundreds of parti-
cipants conduct asynchronous discussions and in which
few, if any, participants read all messages (Sack, 2002).
Instead, newsgroups function as a form of public sphere
discourse around issues, advice and sociality. With
archiving, newsgroups become repositories of this
information over time.
581
We partially processed the archives using Conversa-
tion Map, a newsgroup browser that parses each
sentence and enables identification of the social network
of participants, the topics of their conversations, and a
generated thesaurus of their key terms (Sack, 2002).
Conversation Map was used to locate key threads and
then these postings were copied into Atlas.ti for coding
and analysis using a modified grounded theory approach
(Glaser & Strauss, 1967; Muhr, 1997). This method is
limited in its reliance on reported experience and
arguments, but allows for similar statements to be
located across a large number of messages. These news
postings have been supplemented by following threads
into the present. In this manner we were able to identify
general themes and think through the implications of
very large-scale conversations for the persistence of new
social movements composed of contributors who mostly
participate for short periods at a time. These themes
allowed the identification of ‘‘just plain crazy’’ and
forms of ‘‘counter-emplotment’’ as discussed in the
following sections.
Using online discussions has drawbacks. Most con-
tributors use pseudonyms, and one cannot make claims
about their social composition. What they do represent,
however, is a huge source of actual discussion between
sufferers about their illnesses and their strategies. As the
aim was to analyze how they spoke about their illnesses
and discussed problems and tactics together in this
‘‘public’’ manner, no attempt was made to contact them.
There is no way of knowing how self-selected online
sufferers are versus offline ones. But here one can note
that their discussions are what online sufferers do say.
In order to help verify that these themes and analyses
were salient, I submitted early arguments online (Dumit,
1997, 1998) and have made presentations at a number of
conferences including one on contested illnesses at-
tended by CFS and MCS activists. Received feedback
from these that has been fed back into the developed
findings presented here.
Just plain crazy
When suffering becomes medical and thereby biolo-
gical, the appropriate response is collective mobilization
and new institutions. Drawing upon social movement
theorists Alberto Melucci, Luther Gerlach, and Virginia
Hine, one can analyze this collective action around
illness as new social movements. New social movements
around health represent collective action in the face of
the individualizing of problems at every level (Melucci,
1996a). Collective sharing of personal narratives helps
show that psychological blame (‘‘It’s all in your head’’)
and psychological responses (‘‘Why me?’’) are structu-
rally produced and can be resisted. New social move-
ments in general provide the space and time for creative
 ARTICLE IN PRESS
582 J. Dumit / Social Science & Medicine 62 (2006) 577–590
and meaningful construction of new experiences and
social roles (Melucci, 1996b).
The experience of having terrible and terrifying
symptoms, seeking medical attention and being turned
down bureaucratically is quite commonly described by
persons with CFS or MCS. Learning that because ‘‘there
is no code’’ for one’s condition, care cannot be provided
is devastating psychologically and socially. This should
be a contradiction for the doctor since ‘‘all symptoms
have a cause, but only some fit into currently acceptable
categories of disease’’ (Cassell, 1997, p. 85). Here there is
a complete failure of ‘‘therapeutic emplotment’’ (Good,
1994; Mattingly, 1994). Patients are left without a story,
outside of clinical time, and with more uncertainty. A
common response to this active denial of one’s suffering
is a self-accusation. One chronic pain sufferer described
the process of self-delegitimization as follows: ‘‘I also
began to believe that I imagined my pain. Even my
doctors ‘helped’ me in that [belief]’’ (Lillrank, 2003, p.
1051).
Healthcare, being treated by a doctor, and obtaining
coverage for one’s illness are all part of fulfilling the ‘sick
role’ in society (Asbring & Narvanen, 2003; Crossley &
Crossley, 2001; Parsons, 1951). Those who do not or
cannot fulfill the sick role, even if only because there are
no codes for their particular form of suffering, are
vulnerable to judgements of faking and malingering. In
the following example, a sufferer describes how much
work is required to manage a relation to a sick role when
her category is actively denied by her doctors.
I had to travel nearly 1000 miles to get to a doctor
who could diagnose me. My GP [general practitioner]
indicated he would abide by the specialist’s diagnosis,
and he has...tacitly, though he still will not commit
himself to even stating that another doctor has
diagnosed me with cfids [CFS] (whether he agrees or
not). Nor is he willing to attempt any of even the
most common symptoms-management protocols
(citing side effects and/or addiction as his reasons
for not wanting to try any of them).
As for other doctors...apart from a few GPs we have
one pediatrician and one general surgeon. There are
an internist and a neurologist about 400 miles from
where I live. I have been to both of them and jumped
through their hoops...in vain, because neither ‘‘be-
lieves in’’ cfids. (Contributor to alt.med.cfs)
Traveling from doctor to doctor in an attempt to fit
in, this sufferer struggles with distances and with belief.
In her study of chronic back pain, Glenton found that
patients needed to achieve a medical diagnosis or gain
access to the healthcare system as proof of suffering.
They feared and found that a psychological diagnosis
weakened their claim to a sick role. In addition, because
social legitimacy depends upon maintaining a sick role,
sufferers also have to work to convince friends, family
and co-workers that their illness is real and legitimate
(Glenton, 2002). In the following posting, the husband
of a CFS sufferer describes a spiral of suffering, social
disapproval, and social withdrawal. The spiral is finally
broken through a combination of partial medical
acknowledgement following intensive searching and
active persuasion of friends through fact dissemination.
Of course this meant that all our friends thought she
was a hypochondriac, that all her problems were due
to being overweight, that she should just ‘pull herself
together,’ eat less, and exercise, and certainly not go
to lots of doctors to try to get help—that is definitely
a sign of weakness. Of course, all this meant that I
was a lot less social, very busy at my (new) job, and
very busy looking after Donna—so of course she has
‘changed’ me, dragging me away from my friends,
making me boring and anti-social. Thanks, guys.
Still, things have gotten slowly better with time. We
eventually heard of CFS, and got a (sort of)
diagnosis, a good doctor, some useful treatment,
and lots of rest. (Donna has taken 18 months off all
study—financially painful, but the only real option).
Our friends are slowly coming round—we have
ended up making photocopies of some CFS papers,
and forcing lots of our friends to read them. Also
there is more general media awareness of CFS, which
all helps convince people that we are not just being
‘kooks.’ (Contributor, alt.med.cfs)
This comment illustrates Melucci’s insight that even
the public stature of the illness movement, its appear-
ances in the media, functions socially as a message: the
existence of a movement around individual suffering
makes healthcare system problems more visible, puts
them on the public agenda, and opens the space for
dialogue about the meaning of suffering from something
like CFS. Without these movements, CFS and other
‘‘invisible illnesses’’ would be unintelligible.2
In these attempts to convince others and themselves
through facts, these sufferers cling to the biological as a
way of ‘‘clinging to normality’’ (Taylor, 1996, pp.
134–135). Verta Taylor’s important book on women
fighting for the medical and social legitimacy of post-
partum depression details the need to establish cred-
ibility in multiple fields at once, to collectively organize,
and to make claims through a variety of facts. Taylor
organizes her argument under the following question:
‘‘What events have led women over the past decade to
embrace psychiatric understandings and [scientific]
resources as tools for social change?’’ (Taylor, 1996, p.
xv).
2
On the status of CFS and other social illness movements as
invisible, see (Barrett, 1997).
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J. Dumit / Social Science & Medicine 62 (2006) 577–590
Significantly, the connection between psychiatry and
the biological works in the case of post-partum
depression but fails with CFS and MCS. In Taylor’s
study, the condition in question is firmly within the
category of mental illness and benefits from the decades-
long struggle by mental-illness advocates for the
biological nature of mental illness and for anti-stigma
and parity in health coverage (Crossley & Crossley,
2001). Nonetheless, the coverage and treatment for
mental illness is still tragically less than for non-mental
illnesses in the US (Peck & Scheffler, 2002; Wessely et
al., 1998; Woolfolk & Doris, 2002). It is this non-parity
and lingering stigma that assaults the sufferers of CFS
and MCS. As the following exchange indicates, psy-
chiatry is seen as an expressly delegitimating strategy by
institutions to deny the reality of these illnesses.
(cited posting)4Why does SSA (the Social Security
Administration) rely on psychiatrists?
(response): I think it’s because they want to say
IAIYH [it’s all in your head], and that you really
aren’t sick. (Contributors to alt.med.cfs)
At stake in attempts to obtain care from the medical
system is some sense of a proper role in society. The sick
role has requirements and these requirements in turn are
subject to change and manipulation. The following
contributor describes how insurance companies, for
instance, can recategorize illnesses arbitrarily as physical
or mental, with the advantage to them that they can pay
less for classified mental illnesses.
My MD (internist) dx’d [diagnosed] me with FMS
[fibromyalgia] a year ago (after 10 years of various
different diagnoses e.g. migraines, and even more ‘I
don’t knows’).
I’ve been on UNUM LTD [disability insurance] for 2
years.
Apparently in ‘reviewing my file,’ UNUM has decided
that FMS is a ‘mental disorder’ and have therefore given
me a limit of 2 more years unless I am ‘confined’ (!).
I have no history of mental disorders, have never
been through any type of counseling, have never
complained of depression—except possibly in the
context of dealing with the chronic pain. Have always
held down a very responsible position in the data
processing field as a programmer and then mgr. of
programmers.
y disparaging CFS as activist whining] not believe
So of course I went to my MD to discuss this. He said
that the UNUM D.O. came right out and said that he
doesn’t accept FMS as a true physically-based
diagnosis and therefore classifies it as a mental
illness. My doctor says he did say that FMS has a
component of depression. I told him that I was
583
certainly never depressed before. Then I asked him
that ‘by depression component’ did he mean as a
cause or result of FMS. He said ‘they don’t know.’ I
did tell him that it sounded to me that he was actually
being ‘used’ by UNUM, and although he didn’t say
so, I think after we talked that he may agree with
this. (Contributor to alt.med.cfs)
This sufferer’s experience with UNUM mirrors that of
many others who have struggled with the trans-factual
status of bureaucratic classifications. As discussed by
Dumit (2000), this status has been acknowledged by US
courts: when the insurance company Blue Cross/Blue
Shield was sued by the family of a woman with manic-
depression claiming that evidence showed that manic-
depression was brain-based and therefore physical and
should therefore be covered as a physical illness, the
insurance company lost because it did not have a
definition of mental illness (Office of Technology
Assessment, 1992). Its response was to create a list of
‘‘mental illnesses,’’ including manic-depression, which it
could then legally cover at half the rate it covered
physical illnesses. The above sufferer’s despair that his
symptoms and diagnosis could be retroactively defined
as ‘‘mental’’ derives not from a repugnance toward
mental illnesses, but from the way in which the
reclassification is directly used to cut off his insurance.
Many sufferers do have a diagnosis of depression in
their medical records; it often follows years of being sick
and socially isolated (Matthews, 1998; Wessely et al.,
1998). Most of those who have tried anti-depressant
therapy haven’t been helped by it3 or other forms of
treatment and remain sick. In interviews with CFS
sufferers, Clarke and James (2003) found that unlike
most chronically ill persons, they did not desire to return
to their normal self, so deep were their wounds at the
hands of institutions. They rejected their normal self
because it had been rejected by the medical system,
because they were unable to inhabit the sick role, and
because they had experienced sudden, complete disrup-
tion of their identity and self. Most had been busy
workers and now they could no longer work and were
separated and isolated from friends and family, most of
whom doubted the veracity of the illness.
The following sufferer is engaged in a critique of an
editorial written in the Wall Street Journal that publicly
accused CFS sufferers of malingering.
Should Ms. Rabinowitz [author of an editorial
CFS exists, she is welcome to spend time with me, as
I am lonely and would appreciate the company. I
have had CFS for three years and have had to
(hopefully temporarily) retire from a very satisfying
3
Those that have been helped to a significant degree have
been reclassified as having been depressed.
 ARTICLE IN PRESS
584 J. Dumit / Social Science & Medicine 62 (2006) 577–590
and lucrative career in systems software. Besides all
the physical pain, mental disorientation and humilia-
tion of not being able to care for oneself, there is
intense loneliness from being removed from the
workplace and friends of the same age bracket,
inability to continue any semblance of a normal life,
and feelings of worthlessness because one no longer
has a career and is no longer contributing to society.
For someone who had been a self-sufficient, tax-
paying, highly motivated individual all my life,
having to now accept disability (which is also a
humiliation, as I do not feel that I am earning it as I
did when I was well), and struggle physically to care
for my own needs, is not my idea of a ‘‘fashionable or
nonsensical ailment.’’ I would trade places with Ms.
Rabinowitz any day, and then let us see how
nonsensical she feels about CFS. (Contributor to
alt.med.cfs)
This intervention illustrates the usefulness of online
communication. First, discussion groups regularly cite
the media, keeping each other informed as to the public
status of their condition, honing arguments in response,
and celebrating victories when they occur. Second, these
provide a forum where self-redescription can take place.
This contributor insists that his depressed feelings are an
effect of the humiliation of a illness that attacks his
ability to work.
Another response of many sufferers is to attempt to
educate others, including their doctors through facts.
They use the internet to share tips, medical articles, and
strategies for making their doctors understand their
condition (Carpman, 1993). In many cases, however, the
doctor is sympathetic but impotent.
(cited posting)4I took every article that pertained to
me which I got from the cfids journal. I circled the
parts that were the worse that day & read them to
him. Thank God he listened & has now attended
seminars on cfids. Don’t give up please.
(response) I’ve been doing that for years...with not
much success. I have taken in enough info to my doc
to paper several walls. He reads them and then says
the same thing he says every time: ‘‘there’s nothing I
can do for you.’’ (Translated: ‘‘nothing I’m willing to
do for you’’.) He’s willing to accept that cfids may
indeed be real, but he’s not about to put his
reputation on the line for any of his increasingly
more numerous cfids patients. (Contributors to
alt.med.cfs)
The interpretation of the doctor’s response as passive
aggressive is understandable because of the social
consequences of being unable to obtain healthcare.
Doctors are often caught in the middle, being asked
simultaneously to provide care and to be a gatekeeper
for costs (Walsh, 1987). As with Werner and Malterud’s
study of chronic pain, ‘‘the doctor has the role of enemy
or protector of the welfare state, rather than being the
patient’s lawyer in the battle for receiving diagnosis, help
and treatment’’ (Werner & Malterud, 2003, p. 1414).
The development of managed care has only increased
the effects of both of these illnesses by elaborating
schedules of treatments to match diagnosis boxes, by
putting severe constraints on individualized treatment,
and by limiting exposure to long-term treatment
commitments4. The combination of these factors which
structure the symbolic domination and frame the
undecidabilities of these illnesses produce a decidedly
liminal spacetime I call ‘‘decompensation psychosis.’’
Inverting the legal–psychiatric classification of ‘‘com-
pensation neurosis’’ in which a patient is accused of
being sick only in order to get paid for being sick, Many
people with these sociomedical disorders often cannot
get even a psychiatric diagnosis. In other words, they are
neither healthy nor ill nor even mentally ill, they are in
the colloquial phrase, ‘‘just plain crazy.’’ The following
discussion outlines this chaos of living without a
description:5
(cited posting)4I will be going back to work full time
on the 19th of August.......I am not sure that I can
handle it...I will try tho. Also wanted to let you all
know that I finally was diagnosed from a doctor that
my work sent me to with CFS. They all wanted to
deny my pay, but since he gave me a final
diagnosis,,,,,,they have paid me to date.
4 Also, the county coordinator suggested me to go
to an attorney to file for Social Security.....I am so
concerned that I will be laughed at.....I think that
people at work just think that I no longer want to
work, even tho they all have to realize that I was a
very hyper person before this all hit me.
4 Any advice for me? I really think that they think
that I am faking this.
(response): Dear L,
If you don’t mind, I think that is funny, I have been
collecting SSDI and Long Term Disability for 8 years
now and my daughter still thinks I am faking it.
Should have gone to Hollywood where I could have
made more money faking it, instead of collecting a
portion of what I was making 8 yrs ago never mind
what I would make now if I could still work. Tell
them to spend a day in your body then they can judge
you. (Contributor to alt.med.cfs)
4
See the conference on ‘‘Low-level Exposure to Chemicals
and Neurobiologic Sensitivity’’ (Public Health Service, 1994),
especially Simon (1994), for extensive debates over the
diagnosis of MCS and the effects of managed care on it.
5
I have adapted this phrase from Emily Martin’s formula-
tion: ‘‘people living under the description of manic depression
(Martin, forthcoming).’’
 ARTICLE IN PRESS
J. Dumit / Social Science & Medicine 62 (2006) 577–590
Being ‘‘just plain crazy’’ is a fully repugnant
prolonged liminal status produced at the moment when
mental illness has gained some legitimacy within socio-
medical circles (Murphy et al., 1988; Monks &
Frankenberg, 1995). The categorical bureaucratic ability
to be ‘‘just plain crazy’’ points to the collapse of medical
care onto suffering in general: if you are suffering, you
are in need of medical care. If you then can’t get medical
care or insurance or disability, then there is an
assumption that you probably aren’t really sick and
you probably aren’t really suffering. It points, perhaps,
to a cultural situation where we have become dependent
on the verification of suffering by third-parties (cf.
Boltanski, 1999). When successful, as the above sufferer
discusses, a medical diagnosis is an avenue back to the
social recognition through the sick role. But as her
respondent notes, until the condition itself is given the
full coded recognition of the medical community, even
recognition by some institutions may not be recipro-
cated within one’s family.
Collective counter-emplotment of facts
Collective sharing of useful information is another
primary purpose of new social movements as described
by Melucci. Individuals who are otherwise isolated and
having to face institutions on their own, are able to draw
upon the collected experiences of others in order to
navigate these sites of struggle, including courts,
insurance agencies, mass media, and government. Most
of these institutions depend upon control over the flow
of information and impersonal procedures for their
smooth running. The collective wisdom of individual
experiences offers powerful modes of resistance to this
kind of power.6
Within the domain of medical facts, critiques of
medicalization have focused on the power that doctors
have over patients in denying and framing their
experience. This process is what Cheryl Mattingly has
identified as ‘‘therapeutic emplotment’’ (Mattingly,
1994). Mattingly and others have shown convincingly
that even as they appear to be offering patients a choice,
many doctors ask questions and phrase responses that
elicit the response that the doctor thinks is right (Good
et al., 1994). On its own grounds, this critique is quite
perspicacious. The reification of symptoms often results
in the evacuation of the meaning of suffering and
delegitimates the speaker’s authority. But to the extent
that the doctor herself is constrained by algorithms,
6
Judiciary and media ‘‘definition making power’’ open up to
politically active citizens. (Beck, 1992, pp. 194–195). Judiciary
independent decision making by judges because of overproduc-
tion of hypothetical, isolated, detached results in science leads
to pluralizing and politicizing verdicts (196).
585
illness definitions, and insurance protocols, they too are
subject to emplotment. Patients often discuss in support
groups and online the possibilities to take this increas-
ingly mechanical form of diagnosis and use it to emplot
their doctors, telling them exactly what needs to be said
to get what they want. Analyses of doctors’ domination
here becomes the domination of both patient and
doctor, by the code or algorithm.
A common topic of discussion on and off the internet
concerns how a sufferer should approach his or her
doctor. There are explicit instructions for how to dress,
what to say, what articles to bring and so on. These are
accompanied by accounts of how doctors will see the
sufferer, and therefore what not to say:
MCS patients, who are notorious for the panoply of
distressing symptoms they report, may not always
realize how physicians perceive their litany of
complaints.—in medical school, young doctors-to-
be often are taught that the more symptoms a patient
reports, the less likely there is anything to them, i.e.,
the diagnosis is probably a psychological one. (Mill-
er, 1994, p. 258)
For many sufferers of these illnesses, this direct
delegitimation of their symptoms as psychological is a
more radical relation to uncertainty. Two CFS sufferers
and activists drew upon Jean Baudrillard in support of a
malevolent biology. They characterize CFS in terms of a
‘‘a hysterical substitutability of symptoms which always
elude the closure of diagnostic knowledge’’ (Baudrillard
& Lotringer, 1988, p. 44; Shildrick & Price, 1998). With
this, they imagine a relation to biology that is far more
wily than science is, and take the open-endedness of
science as proof of the futility of seeking closure. In the
face of this systematic delegitimization, sufferers re-
spond by emphasizing not the bottom of things, but the
surfaces, the microtactics of decisionmaking.
(cited posting) 4Unfortunately, I was not dressed
‘sloppy’ as I had the habit of putting on the
professional look for work, no matter how bad I felt
inside. Anyone relate to the ‘mask’ dilemma?
(response) Yep. When my disability came up for
review, my doctor told me to not dress nicely, not
shower, and most of all, not bring my computer
printout of all my symptoms, treatments, tests and
doctors that I was maintaining then. (Contributor to
alt.med.cfs)
Squeezing a variable illness into exceptionally small
bureaucratic holes requires conforming one’s variability
to the strict requirements of the micro-judgements of
administrative experts. In the discussion, a patient’s
doctor is helping him understand that his willful
attempts to maintain appearances in spite of his illness
would be used against him in deciding whether he was ill
 ARTICLE IN PRESS
586 J. Dumit / Social Science & Medicine 62 (2006) 577–590
at all. Surviving face-to-face individual encounters with
adjudicators poses additional, intractable dilemmas.
Codes and protocols may be designed so that it is
difficult to negotiate them at all.
(cited posting) 4And don’t you think all those
disability review doctors know perfectly well that
anyone faking a disability will be trying to look sick
by looking sloppy?
(response) A case worker will probably know nothing
other than that they will have been given instructions
to make sure that the forms have been filled out and
to make notes of your appearance. The disability
review doctors may assume by the diagnosis of CFS
that you are faking it and any evidence like the ability
to take care of yourself will only support their
prejudice. Looking shabby is only a defense from
those who would twist around your _healthy_
appearance to bias your case against you.
With the system that has been presented to us, if we
try to hard to take care of our appearance we may
find that only the fakers can get benefits (sic).
(Contributors to alt.med.cfs)
This discussion confirms that applicants for disability
are between a rock and a hard place. If they do dress the
part, then they are ‘acting’ ill. But if they do not then
they will be not be considered ill. Therefore their only
choice is to pretend to be who they actually are, in the
institution’s view. They must work at ‘‘achieving
appropriate appearance’’ (Werner & Malterud, 2003,
p. 1413) and ‘‘look and act sick’’ (Asbring & Narvanen,
2003, p. 714). It must be kept in mind that all of this
necessary work achieves only a series of minor,
haphazard victories.
This catch-22 of systematic micro-judgements is a
constant source of anxiety for sufferers. At a website
dedicated to exploring identity, support, and living with
Chronic Fatigue Syndrome there is a section where
experts meet online weekly with sufferers (Wellness,
1994). One time the guest speaker was a lawyer and the
discussion centered around how difficult it is to get
disability when one has CFS. The group decided that
they should hold a mock trial in which the lawyer would
act as judge in order to give the others a chance to
practice presenting their case. This would help them
avoid certain pitfalls. There was a problem however: the
group was divided into two camps: one side wanted to
get disability for the disease CFS which was exceedingly
difficult. The other side was willing to get disability for
depression (a secondary diagnosis many of them had in
their medical history). For the first side, getting
disability for depression was selling out to those who
want to discredit CFS as a mental illness. The depression
side argued that it was better to get disability quickly
and get out of that aspect of the legal system.
They eventually decided they would need two mock
trials because the two diagnoses were very differently
treated in the courtroom. A person with depression, for
instance, is characterized in psychiatric manuals as not
paying attention to personal appearance. A judge who
sees many disability claims a day has learned how to
make judgements based on a variety of criteria including
this one. Therefore dressing up would hurt. But if one
were trying to argue for chronic fatigue and not
depression, one should be sure to dress up, as otherwise
one risked being thought depressed by such a judge. The
discussion was filled with microtactics like these—being
careful not to brag about spending all night in an online
chat room; what things to be sure to say; how to act;
whether to have surrendered your diver’s license before-
hand and so on. These tactics were provided in direct
response to the perceived treatment at the hands of
administrators and administrative law judges.
In all of these cases, the emphasis is on who is saying
and who is hearing the facts of the illness. The more one
can understand how the discourse of the gatekeepers is
constructed, the more one can frame one’s facts so that
they have a chance of getting through. The internet and
other forms of collective sharing here work to archive
the individualized experiences of medical and courtroom
domination, turning them into collective practices of
shared identity resistance, and a vulnerable big other. In
the process, to the extent that they are known, local
diagnostic criteria become the environment within which
people act. This can ensure the open-endedness of the
criteria.
A second level of counter-emplotment views the
institution itself as subject to prediction and control.
Even though one may be routinely denied the first time
one tries to obtain help, others have found that repeated
attempts often meet with success. As the following
contributor eloquently puts it, even within regimes of
systematic denial, one can learn to dance with the
institutions.
People should expect two or three rejections before
they get an acceptance. People should expect that the
process will drag on in hopes that they’ll just go
away. It’s not always that way, but I’ve heard of
some SS workers who really resent people who apply
and make it as hard as possible. You can’t let
yourself get discouraged, and you have to convince
yourself not to take a rejection of your application as
a rejection of you. Think of it as a kind of formal
minuet in which you have to go through the required
steps to finish the dance. (Contributor to alt.med.cfs)
The point of those who had gone through it two or
three times before was that the judge is often looking for
a reason to exclude you. The emphasis was on the
formality. You had to know the microtactics of how
 ARTICLE IN PRESS
J. Dumit / Social Science & Medicine 62 (2006) 577–590
judges make their judgements, including bench inter-
pretations of DSM criteria and other tricky notions of
what counts as able-bodied.
Persons in these social movements are not simply
trying to become experts. Instead, these folks become lay
experts and experts at being non-experts (Epstein, 1996;
Taylor, 1996). Through networking to provide referrals,
and advice, through helping with support, negotiation,
and making one’s way through bureaucracies, they
become experts at living in risk society.
But I have never heard of SSA reviewing someone
every 6 months. In our support group we have found
that the best defense against getting reviewed is to
regularly see a doctor. Even if the doctor cant help,
just going in and telling them how you continue to
feel. Of course the more doctors you see and the more
meds you take (or try) adds to your credibility as
having a legitimate illness. That is how SSA sees it.
Sick people see doctors and take meds. It’s a pain but
that is the system. (Contributor to alt.med.cfs)
In this discussion, the contributors construct together
an understanding of the system as a system that is both
oppressive and navigable. Put together with their
analysis of how they are produced as just plain crazy,
they are able to generate an identify for themselves that
is preserved even when they feel personally attacked.
None of this is to say that they enjoy this game, or prefer
it to being healthy, rather that they have found a series
of time-consuming, frustrating, often expensive tactics
that ensure a modest chance of maintaining their sanity
as rational actors and allowing them to obtain some
recognition and treatment for their conditions.
(cited posting)4I found that most people are denied
twice then a lawyer needs to take over. Of course
great documentation from your doc(s) is essential but
the norm is to deny twice. I think that they hope most
people will give up.
The 3rd step is appearing before an Administrative
Law Judge. This is where the docs info as well as a
really great evidentiary documents (mine was 18
pages without Dr. reports) come into play.
(response) I’ve just joined the fight, completed all the
paperwork, signed 12 authorization papers for
release of all medical records and expect to hear in
2–3 months. I am fully prepared to be turned down,
but plan to fight through to the attorney stage and
beyond if necessary.
I’ll let you know how it goes here in Tennessee.
Thanks for info.
(another response to the posting) Me too. I see a
lawyer on Wednesday to start the process and will see
if she can refer me to an MD more accustomed to
what disability wants i.e.: documentation. I’m pre-
587
pared to be turned down first time etc. (Contributors
to alt.med.fibromyalgia)
Social movements or collective action in the form of
online discussions and archives offer a set of systemic
critiques, or critiques of the biomedical system, so that
sufferers can make sense of their personal histories of
seemingly haphazard troubles. Self help groups empow-
er members and challenge medical orthodoxy (Vincent,
1992; Kelleher, 1994). The networks also continually
experiment with and offer new forms of social relation-
ships7 for sufferers and the public at large to inhabit:
these include the idea of illness as a lifestyle (a person
with CFS or PWC), which requires cultural respect for
differences caused by otherwise invisible illnesses. Other
relationships include the notion of the patient as an
expert, as a survivor, and as a communicator.
Conclusion
As this article illustrates, when emergent uncertain
illnesses are also highly contested, facts function
differently. Insurers, industry and states have a vested
interest in denying and dismissing claims of chronic
illness where they can get away with it. Rather than
grounding or proving the experience and specificity of
illness, facts are deployed for or against recognition of
the suffering itself. Collective actions by sufferers emerge
in part to intervene in the framing of facts because, in
the American healthcare context, facts offer entry into
debates. These are responses that treat the dynamic
tension of claims and counter-claims over emergent
illnesses as a landscape or terrain that is stable enough to
maneuver within. This does not mean that patient-
organized movements buy into the scienctification or
biomedicalization of the illnesses any more than the
insurance companies or agencies do. For sufferers
excluded from the healthcare system and therefore from
the sick role, care is wanted; for corporations, profit.
Truth is secondary and thus facts are forces.
Sufferers initially experience contested illnesses in the
form of exclusion: since there is no code for this, there is
no care. This order, instantiated by contract and state
sanction and sets the terms within which facts function.
It does not matter if you show us that you are suffering,
the facts must show that you have a scheduled disease or
injury. Illness as code becomes a field upon which
strategic moves (of facts) are made. Facts can now only
7
On social experimentation see (Gerlach & Hine, 1970, pp.
163–172; Melucci, 1989, p. 60, 1996a) and also (Baudrillard,
1993) for an analysis of the social logic and resistance of
‘‘offering’’ new forms of social relationships. Turner (1982)
independently formulated a similar notion of social experi-
mentation and offering within his analysis of communitas.
 ARTICLE IN PRESS
588 J. Dumit / Social Science & Medicine 62 (2006) 577–590
be seen as deployed for or against the code. Health
companies and agencies, faced with increasing illness
categories with uncertain costs struggle to convert
uncertainty into calculable risk (Nader & Smith, 1996;
Schuck, 2000). They eliminate uncertainty through
framing facts as not yet able to make definitive claims
and therefore irrelevant. They also use contract law to
restrict definitions and facts. In this way, they may even
acknowledge that an illness exists, such as CFS or MCS,
but free themselves from having to provide adequate
care for it.
Patients, in turn, faced with restrictive bureaucratic
fields collectively discover tactics that allow them, some-
times, to survive. Whereas a corporate strategy might be
to defer and delay, as this lessens the claims paid per
cycle, patients cannot afford a delay as they are currently
suffering. Instead they struggle with facts and codes to
open windows of care, windows that will be closed in
time, but are open long enough to survive within.
Many sufferers of these illnesses are not all that easy
to engage face to face. They are too fast or too slow, too
tired, agitated, pained, or unreliable. The internet, with
its asynchrony and low bandwidth actually mediates this
tremendously, allowing fluent ‘normal’ communication
to take place. The issues and resources provide the basis
for the networks of small groups, internet communities,
and mass media sharing to make life more livable for
sufferers. As a social movement, sufferers and others
committed to helping them provide a community and
offer alternative personal narratives, strategies for
surviving, and emotional support. In the words of
William Gamson, there is a big difference between
individual resistance, and ‘‘being part of the Resis-
tance.’’ (Gamson in Taylor, 1996, p. 15; see Dumit,
2005).
The resultant discussions form the basis of constant
experimentation with strategies, tactics, identities, and
relationships, as well as with the expected alternative
therapies, referrals, and emotional support. The persis-
tence of uncertain and contested illnesses like CFS and
MCS as ‘emergent’ must be understood negatively as the
continued existence of suffering that is not being treated,
and positively as the ability of sufferers to creatively
survive within the cracks of institutions arrayed against
them.
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