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Am J Community Psychol
DOI 10.1007/s10464-011-9457-7
ORIGINAL PAPER
Small Wins Matter in Advocacy Movements: Giving Voice
to Patients
Leonard A. Jason
Ó Society for Community Research and Action 2011
Abstract In this article, the various players are delineated
in a story of a contested illness and patient advocacy,
played out within the corridors of federal power. It is
suggested that the mistreatment and negative attitudes that
health care providers and others have towards those with
chronic fatigue syndrome (CFS) is possibly due to the
social construction of this illness as being a ‘‘Yuppie flu’’
disease. Institutional factors are identified that created
these norms and attributions, as well as the multiple
stakeholders and constituent groups invested in exerting
pressure on policy makers to effect systemic change. This
article also provides examples of how the field of Community Psychology, which is fundamentally committed to/
based on listening to and giving voice to patients, is
broadly relevant to patient activism communities. This
approach focused, over time, on epidemiological studies,
the name, the case definition, and ultimately the change in
CFS leadership at the Centers for Disease Control and
Prevention. Keys to this ‘‘small wins’’ approach were
coalition building, use of ‘‘oppositional experts’’ (professionals in the scientific community who support patient
advocacy goals) to challenge federal research, and taking
advantage of developing events/shifts in power. Ultimately, this approach can result in significant scientific and
policy gains, and changes in medical and public perception
of an illness.
Keywords Social change Patient advocacy Community coalitions Chronic fatigue syndrome Myalgic encephalomyelitis
L. A. Jason (&)
DePaul University, Chicago, IL, USA
e-mail: [email protected]
Background
Patient advocacy movements draw on the examples of the
women’s health, environmental health and occupational
health movements to achieve legitimization of a particular
illness, direct resources to research and patient care, and
influence public policy. For Freire (1970), change begins
by helping people identify the issues they have strong
feelings about, then helping them search for solutions to
their problems in an active way. Following the social justice tradition, these movements present arguments for
fairness and rights, but they also draw on the language of
science to make their claim (Moritsugu et al. 2009). Typically responses entail ‘‘removing scientific, technical, and
medical forms of expertise (and sometimes one or two
experts) from traditional institutions and locating them in
local, communal fields of action’’ (Couch and Kroll-Smith
2000, pp. 286). While there have been excellent descriptions of these movements within the chronic fatigue syndrome (CFS) field (Johnson 1996), some reports tend to be
dated (e.g., Aronowitz 1992) or several others do not
provide an inside look at the changing coalitions and tensions that have emerged over time.
Fundamentally, this article will describe a misunderstood illness and organized patient advocacy in collaboration with researchers that was able to impact policy makers
at the national level. One of the primary focuses of patient
advocacy movements is to give a voice to patients. As
noted by Wandersman and Florin (1990), citizen participation emphasizes democratic processes to insure that
community members have meaningful involvement in
decisions that affect them. When patient activists insisted
on obtaining a community-based sample to determine
accurate prevalence figures, community research removed
the filter of the physicians so that studies could directly
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access the voice of the patients. When patients complained
about the stigma in the CFS name given to this illness,
community researchers listened to patients and developed
research tools that more keenly represented what patients
said and felt. When Centers for Disease Control and Prevention (CDC) officials substantially broadened the CFS
case definition to possibly include those with purely psychiatric disorders, community research was mounted to
challenge the new criteria. Finally, community researchers
supported patient demands for a change in leadership at the
CDC’s program of CFS research. This patient advocacy
effort used a ‘‘small wins’’ approach at multiple levels to
change the way CFS was perceived by the medical community, policy makers and the general public.
The events unfolded in an incremental fashion and
change agents were well positioned to take advantage of
opportunities to value the patient’s voice and providing
amplification, which is a basic focus of patient advocacy
movements. This account represents my own perspective
about this complex matter which has been informed not
only by my direct experience of it but by what I learned
about it from individuals with CFS, CFS patient advocates,
and family members.
A Contested Illness
CFS is a highly incapacitating illness, with patients often
more functionally impaired than those suffering from Type
II diabetes mellitus, congestive heart failure, multiple
sclerosis, and end-stage renal disease (Anderson and Ferrans 1997; Buchwald et al. 1996). In an attempt to assess
CFS-related mortality, Jason et al. (2006) analyzed a
national CFS foundation Memorial List containing the
names of individuals with CFS who had died. They found
the mean age of death for heart failure (59 years), cancer
(48 years), and suicide (39 years) among those with CFS
was considerably younger than the mean age of deaths in
the general population from heart failure (83 years), cancer
(72 years), and suicide (48 years), suggesting that CFS
might have increased the risk of death for at least this
sample. In addition, the total direct and indirect costs due
to CFS range from $18.7 to $24 billion dollars per year
(Jason et al. 2008).
Even though the statistics and findings above indicate
that CFS is extremely debilitating and costly to society,
many studies indicate that patients with this illness have
experienced disrespectful treatment by the health care
system (Jason et al. 1997). For example, Anderson and
Ferrans (1997) found that 77% of individuals with CFS
reported negative experiences with health care providers.
Green et al. (1999) found that 95% of individuals seeking
medical treatment for CFS reported feelings of
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estrangement, and 70% believed that others uniformly
attributed their CFS symptoms to psychological causes. In
addition, many patients report experiencing condescending
attitudes from many friends, work associates, and even
some family members (Johnson 1996). There have been
reports of children with CFS being taken away from their
parents after those parents were accused of not meeting
their medical needs (Ryan Baldwin Returned Home 2010)
and individuals with CFS being deprived of basic medical
care and even being institutionalized in mental hospitals
(Lost Voices 2008).
Johnson (1996) and others suggest that some early scientific research, which strongly emphasized psychogenic
factors at the exclusion of other more biological causal
factors, has limited the exploration of the pathophysiology
of CFS. A number of prominent scientists within the US
and Europe initially described CFS as primarily psychologically based and opposed characterizing CFS as a
physiological illness. For example, Abbey and Garfinkel
(1991) wrote: ‘‘chronic fatigue syndrome will meet the
same fate as neurasthenia-a decline in social value as it is
demonstrated that the majority of its sufferers are experiencing primary psychiatric disorders or psychophysiological reactions and that the disorder is often a culturally
sanctioned form of illness behavior’’ (p. 1638). Richman
and Jason (2001) argued that the social construction of CFS
as a psychogenic illness of neurotic women, similar to
earlier depictions of multiple sclerosis, may have contributed to the negative attitudes that health care providers and
others have towards those with this syndrome.
These results also need to be interpreted within a context
where psychiatrists and physicians have regarded fatigue as
one of the least important of presenting symptoms (Lewis
and Wessely 1992). More recently, many within the
research community have adopted a biopsychosocial
approach for understanding fatigue and CFS (Johnson
2008). While such an approach attempts to integrate both
biological and psychological aspects of illness, patients
have continued to be concerned that the emphasis on many
of the proposed models has a strong psychogenic emphasis.
For example, one research group from the Netherlands
(Vercoulen et al. 1998) has maintained that individuals
with CFS attribute their symptoms to physical causes, are
overly preoccupied by their physical limitations, and do not
maintain regular activity. According to this model, these
factors cause individuals with CFS to be functionally
impaired, implying that the central problem with patients
experiencing this condition is a psychosomatic preoccupation with one’s fatigue. As a consequence, some investigators have endorsed a treatment approach that focuses on
convincing patients to recognize that their illness is not
biologically based but, rather, a phobic avoidance of
exercise due to psychological problems. Other studies have
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emphasized a CFS etiology related to inappropriate reactions to dealing with childhood life stressors and implicating childhood trauma as a possible cause of CFS or
‘‘chronic unwellness’’ (Heim et al. 2006). Few other illnesses have had such antagonism between these opposing
‘‘psychological’’ versus ‘‘biological’’ views (Jason et al.
1997).
It is beyond the scope of this article to describe the
dozens of individuals and organizations involved over time
in this controversy but suffice it to say there is strong
reason to believe there is a biological basis for CFS that
needs to be pursued in research (Jason et al. 2011). However, in the sections below, the interactions over a 20 year
period between two critical norm creating organizations,
the CDC and a CFS patient organization will be profiled.
The outcomes of the, at times conflictual, exchanges had
significant implications for how CFS has been portrayed
and understood by the scientific community, the media, and
the general population. As will be clearly indicated, the
interactions between these two gatekeepers were marked
by contradictions, mixed allegiances, changing alliances,
and complexities.
The sections below will also illustrate the power of
patient advocacy movements (Kroll-Smith and Gunter
2000), which can build coalitions and take advantage of
developing events/shifts in power to bring about policy
changes. Ultimately, for change to occur with influential
norm-setters, it is critical to mobilize coalitions involving
multiple stakeholders, particularly at critical times. ‘‘Small
wins’’ can often help motivate an advocacy community to
both stay committed to a social justice cause and to strive
to accomplish even larger changes over time. Giving voice
to patients is a fundamental part of the Community Psychology field, and I will describe how this occurred through
research activities in collaboration with the broader patient
activism community.
Epidemiologic Studies
Among the different CFS patient organizations, the largest
and most influential has been the CFIDS Association, with
Kimberly McCleary serving as the CEO for over 20 years.
Representing the patient community, she and her organization had a number of confrontations with the CDC over
the nature and emphasis of their CFS research program at
the CDC. For example, in the 1990s, investigators at the
CDC published epidemiologic research that portrayed the
illness as being relatively rare, affecting about 20,000
people, and further characterized patients as being European-American and middle to upper-class women (Reyes
et al. 1997). These findings supported the belief that CFS
was a ‘‘YUPPIE flu’’ disease. And as long as scientists and
the public perceived CFS as rare, the CFIDS Association
and other patient activists realized CFS would be unlikely
to receive the needed federal attention and community
resources to develop a better understanding of this illness
or provide patient services. Tensions between community
organizations and government scientists are not uncommon, as Brown (2000, pp. 365) affirmed: ‘‘In their popular
epidemiological efforts, community activists repeatedly
differ with scientists and government officials on matters of
problem definition, study design, interpretation of findings,
and policy applications.’’
The CDC epidemiologic studies were based on a method
that relied on physician referral of patients with CFS
(Reyes et al. 1997). However, if the physicians did not
believe the illness existed, or if patients did not have a
physician, many people with CFS would not be referred to
researchers or counted in prevalence surveys. In the early
1990s, with financial support from Kim McCleary and the
CFIDS Association, my research team conducted a prevalence study whereby a randomly selected group of individuals were telephoned and screened for symptoms of
CFS. Those that were identified in the telephone screen as
having several CFS symptoms were then provided a
complete medical and psychiatric examination to determine whether they actually had CFS. This study differed
from the methods used in the CDC study whereby physicians determined who was referred (and thus evaluated) as
a possible CFS case. These pilot data from Jason et al.
(1995) suggested that CFS rates were much higher than the
CDC had previously estimated. These data were extremely
helpful in securing a large multi-disciplinary NIH community-based epidemiological grant, which found that over
800,000 people in the US had CFS (Jason et al. 1999) and,
contrary to prior beliefs, ethnic minorities had higher CFS
rates than European-Americans, and CFS rates were not
higher among those with high incomes.
The CFIDS Association used this research to counter the
myth that CFS was either rare or a ‘‘YUPPIE flu’’ disease.
Eventually, the CDC endorsed these community-based
epidemiological methods and published comparable CFS
prevalence rates (Reyes et al. 2003). This example suggests
that by focusing on specific scientific areas that are manageable or capable of changing, social activists can adopt a
‘‘small wins’’ approach. In other words, while community
organizers and researchers are often confronted with
overwhelming, seemingly intractable problems, by focusing on one small piece at a time, a success that has the
potential to gain new opportunities and possibilities for
change can be achieved (Weick 1984).
By the late 1990s, the CFIDS Association again had
confrontations with the CFS program at the CDC. This
time, this patient organization accused program directors of
diverting 12.9 million that Congress targeted for CFS
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research into other areas at the CDC. Ultimately, these
diverted funds were reclaimed and used to fund CFS
research in the 2000s.
Changing the Name
The name given to this illness by the CDC was perceived
by patients and activists as belittling the seriousness of the
condition (the illness was previously called Myalgic
Encephalomyelitis before the CDC renamed it CFS in
1988). Many patients argued that the name CFS placed too
much emphasis on the symptom fatigue, when, in fact, the
illness is typified by many severe symptoms in addition to
fatigue, such as memory losses, flu-like symptoms, and
post-exertional malaise. Fatigue is generally regarded as a
common symptom experienced by many, otherwise healthy, individuals in the general population. A number of
patients used the analogy that if bronchitis or emphysema
were referred to as chronic cough syndrome, those illnesses
too would be trivialized. Patient groups including the
CFIDS Association were united in wanting the name
changed.
However, even by the late 1990s, there were no studies
providing concrete evidence that the name CFS might
negatively influence attributions that others made toward
patients. Patient advocates had been interested in a better
understanding of how the name of the illness might influence stigma. With input from patient advocates, my
research team conducted several studies including one that
was funded by the CFIDS Association. In one of these
studies, medical trainees were provided a case description
of a patient with prototypic symptoms of CFS. The trainees
were randomly assigned to several groups, and each group
was given a different diagnostic label for the patient (e.g.,
Chronic fatigue syndrome, Myalgic Encephalopathy, etc.).
Results of these studies indicated medical trainees’ attributions about CFS changed as a function of which diagnostic labels were used to characterize the person with this
illness (Jason et al. 2001). The more medical sounding
term, Myalgic Encephalopathy (ME), was associated with
the poorest prognosis, and this term was more likely to
influence participants to attribute a physiological cause to
the illness. Advocates of a name change cited this study
to support their contentions that diagnostic labels can influence attributions, and this study provided scientific justification for selecting a new diagnostic name for this illness.
In the early 2000s, because of the increasing demands
among patients for a name change, the US Department of
Health and Human Services’ Chronic Fatigue Syndrome
Coordinating Committee established a sub-committee
called the Name Change Workgroup. Several scientists
(I was invited to be part of this group), clinicians, and
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representatives of patient organizations (McCleary represented the CFIDS Association) were appointed members.
The Name Change Workgroup was charged with the
responsibility of making recommendations that would
require the use of a new term by all federal officials and
agencies; these recommendations would later be submitted
for approval to the US Secretary for Health and Human
Services.
The Name Change Workgroup finally did come up with
a set of recommendations to be presented to the CFS
Coordinating Committee. However, at the same time,
federal officials disbanded the CFS Coordinating Committee. Some patient advocates felt that this committee was
terminated because the Name Change Workgroup was
actually making progress on changing the name. Concurrently, a new CFS Advisory Committee took the place of
the CFS Coordinating Committee and was wholly comprised of new members who were appointed by the Secretary of the US Department of Health and Human
Services. When the new CFS Advisory Committee met in
2003, they tabled the recommendations of the Name
Change Workgroup, citing more pressing issues needing
attention.
Around the time of the defeat of the name change initiative, the CFIDS Association began receiving millions of
dollars from the CDC to begin a ‘‘CFS Branding’’ media
campaign, designed to help the public better understand the
illness known as CFS. Many activists within the patient
community were uncomfortable with this close relationship
between the CDC and the CFIDS Association, as well as
the campaign to brand the term CFS. Even though the
efforts to rename the illness had failed at the federal level,
many activist groups began using other names for both
their organizations and the illness (e.g., ME, ME/CFS, and
Neuroendocrine Immune Disorder). In fact, in 2006, the
CFS scientific organization changed its name to the International Association of CFS/ME.
These changes in labels could represent second order
change (Watzlawick et al. 1974), as a new name might
reduce stigma and the mistreatment of patients with this
illness. As an example of the importance of these types of
labels, Multiple Sclerosis (MS) was initially believed to be
caused by stress linked with oedipal fixations, but when the
name of the disorder changed from hysterical paralysis (to
discredit the legitimate medical complaints of predominantly female patients) to MS, less stigma was associated
with this illness (Richman and Jason 2001).
Case Definition
In the mid 2000s, the CDC published an article about how
the CFS case definition could be better assessed,
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recommending the use of instruments and cut off points
(Reeves et al. (2005). This broadened case definition was
later used in a community based study. Prevalence estimates based on this broadened definition indicated that
more than four million Americans experienced CFS
(Reeves et al. 2007). In a relatively brief period of time, the
CDC’s characterization of CFS had evolved from the illness being considered a rare disorder, affecting about
20,000 individuals, into one of the more common chronic
illnesses in the US.
In 2006, before the publication of the CDC’s new
prevalence data, a press conference had been scheduled in
Washington, DC and the Director of the CDC was to
preside over this event. The CDC and the CFIDS Association were now working closely together, and both were
enthusiastic about publicizing the new prevalence data
indicating that over 4 million Americans had CFS. However, I was concerned that the broadening of the case
definition might inappropriately lead to bringing in cases
that were actually primary affective disorders, such as
major depression. If a diagnostic category includes both
those with and without an illness, biologic markers of those
with the illness will not be consistently found. Illnesses
without biological markers are often referred to as unexplained, and then researchers often seek psychogenic
explanations of the syndromes (Barsky and Borus 1999).
Some individuals with CFS might have had psychiatric
problems before and/or after CFS onset, whereas other
individuals may only exhibit primary psychiatric disorders
with prominent somatic features. For example, while fatigue is the principal feature of CFS, fatigue does not assume
equal prominence in Major Depressive Disorder (Friedberg
and Jason 1998). Several CFS symptoms, including prolonged fatigue after physical exertion, night sweats, sore
throats, and swollen lymph nodes, are not commonly found
in Major Depressive Disorder. Moreover, the onset of CFS
is often sudden, occurring over a few hours or days,
whereas Major Depressive Disorder generally shows a
more gradual onset. Including patients with solely Major
Depressive Disorder in the CFS case definition could
confound the interpretation of epidemiologic studies, biological makers for the illness, and treatment studies.
By 2006, both the CDC and the CIFDS Association were
both in favor of the new criteria to diagnosis patients with
CFS as well as the expanded number of people who were
thought to have this illness. It is important to note that the
CDC’s new estimated prevalence rates for CFS were
2.54%, which is comparable to the prevalence rate of Major
Depressive Disorder (Regier et al. 1988). I conducted a
study to clarify this situation, and data were collected from
two distinct samples, one with CFS and the other with
Major Depressive Disorder. The study’s outcome was that
38% of the Major Depressive Disorder group would have
been misdiagnosed with CFS using the CDC’s expanded
case definition. These findings were released at a CFS scientific conference (Jason 2007) and over the next several
years, greater attention was directed at problems with this
expanded CFS case definition (Jason et al. 2009).1
Eventually, all patient organizations rejected the CDC’s
expanded case definition. Key to this small wins approach
was use of professionals within the scientific community to
challenge federal research. Community psychologists have
the advantage of relying on clinical-individual and community-contextual contexts in understanding dynamics of
complex social and diagnostic issues (Sandler et al. 2000).
Some scientists perhaps focused too exclusively on particular CFS-like symptoms of individuals out of context,
without consideration to the broader ecologic and social
environment as well as the history of illness onset, and this
failure prevented a thorough appreciation and understanding of CFS. Shinn and Toohey (2003) have coined the term
context minimization error that involves ignoring or discounting the importance of the environments or larger
context within which individuals live.
Change in Leadership at the CDC
In the mid 1990s, Congress enacted legislation to create a
Chronic Fatigue Syndrome Coordinating Committee within
the US Department of Health and Human Services to make
recommendations on CFS policy change to the Secretary of
the Department of Health and Human Services. As previously stated, in the early 2000s, this group was disbanded,
and a new CFS Advisory Committee was formed with a
similar purpose.
In 2007, the terms of many of the members of the CFS
Advisory Committee expired, and new members were
appointed (I was one of the new members appointed to this
Committee and asked to chair the Research Sub-Committee). During the Committee’s 2007 spring meeting, the
Committee members asked for details of how the CDC was
currently using the approximate five million dollars they
were receiving annually for CFS research (CFSAC 2007).
Despite these requests for information, Dr. William
Reeves, the chief researcher for the CFS’s CDC program,
was not willing to supply this financial data, and, in turn,
tensions began to rise. Finally, after hearing about these
problems with accessing this information, two of Reeves’
superiors at the CDC attended a subsequent CFS Advisory
1
In a response to this, Reeves et al. (2009) brought up a number of
methodological concerns regarding this article including our rationale
for using a comparison group with Major Depressive Disorder and the
fact that we only used eight symptoms to compute our CDC Symptom
Inventory. We responded to these critiques in a subsequent article
(Jason et al. 2010).
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Committee meeting where they publicly promised to supply the members of the Committee with the requested
financial information (CFSAC 2008). At last, the members
of the CFS Advisory Committee and others now gained
access to information concerning how the CDC was
funding all their CFS research projects.
About this time, the CFIDS Association, which had
received millions of dollars from the CDC over the past
few years, was beginning to have problems with many of
the policies dictated in their contract with the CDC. In
2008, this patient organization refused to renew a major
contract with the CDC and, at that point, the CFIDS
Association joined in on the effort to have the leadership of
the CFS program at the CDC changed. Although all the
reasons for this new antagonism between former allies will
never be known, it is possible that the CFIDS Association
might have considered a number of factors problematic,
including the recent disclosure of financial data (due to
requests from the CFS Advisory Committee), the lack of
productivity for the funds allocated to the CDC’s CFS
program of research, and increasing criticism directed at
Reeves from activists (including concerns about the CDC’s
broadened CFS case definition).
The CFIDS Association, as well as an increasing number of members of the research community, was now
publicly expressing their dissatisfaction with the CDC’s
leadership. The CFS Advisory Committee was the forum
where all these disparate forces came together and, in 2008
and 2009, the meetings’ attention turned to Reeves and his
leadership of the CFS program at the CDC. The CFIDS
Association obtained all of the financial records that the
Committee had requested, and the CFIDS Association used
this information to accuse the CDC and Reeves of wasting
public funds. At this point, the CDC began an investigation
of potential financial mismanagement of the millions of
dollars in contracts awarded to the CFIDS Association over
the past years for a variety of projects. Although charges
against the CFIDS Association were eventually dropped,
being investigated by the CDC can have an intimidating
effect on any non-profit organization.
Amidst these charges and counter-charges, in 2008, a
blue ribbon committee was appointed to evaluate the
CDC’s CFS research program. High-level officials within
the CDC selected the review members, and this panel’s
overall conclusions about the CDC’s CFS research activities were generally positive. However, many patient
advocates felt that this was not a fair and independent
review, and patient advocates claimed that the CDC had
not appointed impartial reviewers. However, now, the CFS
program at the CDC had a buffer from the increasing
criticism. In addition, the review panel asked Reeves to
develop a 5 year research plan, which he presented at the
next meeting of the CFS Advisory Committee.
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In 2009, forces were beginning to coalesce among different constituent groups, and there was a growing movement to keep the focus on the need for change, in spite of
the CDC’s external review committee’s positive endorsement of the CFS program at the CDC. During public testimony at the CFS Advisory Committee meetings, many
patient activists and, in particular, McCleary and Dr. Fred
Friedberg, President of the International Association of
CFS/ME were extremely critical of the CDC’s leadership.
The Advisory Committee then took action, and voted on a
recommendation to be sent to the Secretary of Health and
Human Services for a change in leadership at the CDC.
During the Fall of 2009, for the next October CFS
Advisory Committee meeting, a new group entered the
scene. Representatives from the Whittemore-Peterson
Institute were invited to present information about their
creation of the first private clinic/research facility focusing
on the care of patients with CFS. Annette Whittemore and
Dan Peterson, in their riveting testimony, told the Advisory
Committee, as well as members of the audience (i.e., those
at the Hubert Humphrey federal building in Washington
and those who tuned in to a live video broadcast; CFSAC
2009), of the success they were having in identifying a
retrovirus among patients with CFS and wondered why the
CDC’s CFS program of research was continuing to disregard biological markers.
The focused and persistent recommendations from the
CFS Advisory Committee, as well as the support from
almost all constituent groups, had reverberated throughout
the Health and Human Services (HHS) Department and
CDC. There was even heightened tension among HHS staff
members, and some rumors suggesting that a civil disobedience protest against the CDC might occur at the fall
meeting. An announcement was made in January 2010 that
Reeves had been placed in a new position at the CDC and
he would no longer be in charge of the CFS research
program, bringing his approximately 20 year leadership
over the CDC research program to an end.
There had been considerable dissatisfaction for years
among the patient community with the CDC’s focus of
CFS research. Reeves became vulnerable when relations
with a number of powerful constituencies were ruptured,
including his relationship with the CFIDS Association, the
CFS scientific organization, the CFS Advisory Committee
members, and the Whittemore-Peterson Institute. There
were dozens of patient advocates and organizations who
were part of this change effort, many of whom were deeply
suspicious of the CFIDS Association due to its opposition
to the name change and the millions of dollars worth of
contracts the organization received from the CDC. Nevertheless, at a critical time, these organizations focused
their activities, worked together, and were effective in
changing the CFS leadership at the CDC. We might never
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know fully what led to these changes. Sarason (1972) has
urged us to focus on what occurred before the beginning of
the formation of these coalitions, as individuals and organizations became aware of the problems and began mobilizing actions to bring about change. By recounting events
among these patient and government organizations that
occurred over the past 20 years, we can gain an appreciation for these early stages of the coalition formation, as
they set the stage and often play a shaping influence on
efforts to bring about change. Therefore, although a settings history is often filled with contradictions and complicated sets of relationships among key players and
coalitions, it is critical to be aware of this history before we
intervene in a system.
Discussion
As we have seen, patient advocacy movements have
enormous potential for achieving social change (KrollSmith and Gunter 2000)—even when those who oppose
change are larger, more powerful, and more influential.
Critically, doing so requires mobilizing coalitions between
multiple smaller groups with similar goals and taking swift
advantage of developing events or shifts in power to bring
about policy changes. Participating in these types of policy
interventions often involves a long-term time commitment,
and the process is often unpredictable as alliances emerge
and crumble, and even adversaries become allies. This is
consistent with Trickett and Mitchell’s (1993) principle of
succession, which posits that settings and social systems
that encapsulate our community interventions do change
over time. This principle of succession alerts us to attend to
the unintended consequences of relationship and policy
changes, as sometimes they are the most significant outcomes of our interventions.
One of the primary focuses of patient advocacy movements is to give a voice to patients: the work and research
described in this article was committed to/based on listening to patients. For example, when the CFIDS Association insisted on obtaining a community-based sample to
determine prevalence figures, researchers removed the
biased filter of the physicians. The new prevalence numbers suggested that CFS was not a rare disorder nor was it
appropriate to refer to this illness as a ‘‘Yuppie flu’’ disease. Community research successfully challenged these
myths and in the process led to a more accurate and less
stigmatized view of patients with this illness. Research was
also used to support the patients’ claim that label CFS was
stigmatizing, and this legitimized the need to adopt alternative terms. The major scientific organization in the US
also changed their name to the International Association of
CFS/ME in part due to these efforts to change the name of
the illness. At the Oct 2010 meeting of the CFS Advisory
Committee, a recommendation was made to the Secretary
of HHS that ME/CFS be used across all HHS departments.
In 2011, the National Institutes of Health sponsored a State
of the Knowledge workshop on this illness and they
referred to the illness as ME/CFS rather than CFS.
This small wins approach was used to change the way
that CFS was perceived by the medical community, policy
makers and the general public. This approach is reminiscent
of the ‘‘incremental’’ approach to change described by
Lindblom (1979). While the approaches were not part of a
coordinated strategic plan, they evolved in response to
opportunities and conditions, which according to Lindblom
is more often the case. Small wins are often needed in the
long campaigns for social justice, as working on small wins
can set in motion forces that can lead to increased higher
level interventions. Other activist movements have used
small wins such as the AIDS/HIV community, where the
AIDS Coalition to Unleash Power (ACT UP) mounted
protests and had regular demonstrations at the Food and
Drug Administration, the National Institutes of Health, and
the White House (Gould 2009). These activists forced
pharmaceutical companies and the government to develop
and disseminate drug treatments against HIV, and were
eventually able to serve on the committees they had previously picketed. ACT UP eventually changed the landscape of how patients with HIV are treated in the United
States. CFS coalitions are now using small win strategies in
their battles for a similar type of legitimacy and recognition.
Valuing the patient’s voice is most compatible with the
values of Community Psychology, where professionals can
function as ‘‘boundary spanners,’’ and dialogue with multiple stakeholders in order to facilitate information
exchange and communication. But there might be times
when the views of community researchers might differ
from those of the patient advocacy movement. For example, by 2006, both the CDC and the CIFDS Association (as
well other CFS activists) felt that the expanded number of
people who were thought to have CFS would help generate
more positive attention for this illness. But by endorsing
that more than 4 million Americans had CFS, they were
implicitly supporting a broadened case definition that had
been proposed by the CDC. I felt that this broadened case
definition had dangers that were not evident, and this
included the possibility of a more heterogeneous group of
patients being included in research samples. If this group
included individuals who did not have CFS, future research
would never be able to identify reliable biological markers
for this illness.
A decade earlier, I had felt embraced by the patient and
scientific community when my expanded prevalence
numbers challenged the inappropriately low CDC rates of
the 1990s. But now I was in a very different situation, as
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Am J Community Psychol
the larger scientific and patient communities were endorsing these expanded numbers, and implicitly supporting the
new criteria for identifying cases. At the time, I did not
have any data to support my position. I still vividly
remember in 2006 when Kim McCleary came to a Board
meeting of the International Association of ME/CFS, of
which I served as Vice-President, and she asked our Board
to endorse the new prevalence figures from the CDC. I
walked out of the meeting, as my fellow board members
were convinced that the larger numbers would help legitimize the seriousness of CFS, and I felt that they were not
willing to listen to my objections regarding the changing
criteria. That tactic shook up the board, and the next day,
rather than endorse the new prevalence numbers, the Board
members asked me to write a position paper that was
posted to the official website of our organization, representing my opinion about the new criteria but not that of
our professional society. I did publish this essay on their
website, and it received considerable discussion among
patient advocates and scientists. Over the next year, my
research team collected data that supported my position
about the possibility that the new criteria brought into the
new case definition individuals who had a primary affective disorder rather than CFS. Eventually members of the
patient advocacy movement, and many leading scientists in
the US no longer supported the CDC’s new criteria for
diagnosing CFS.
The relationship over time between the CFIDS Association and the CDC represented complex behaviors in
interaction with its social and cultural contexts (Kelly
1990; Kingry-Westergaard and Kelly 1990). It is important
to recognize that individuals at the CDC and the CFIDS
Association involved in these events felt that the policies
they adopted were legitimate and appropriate, and also
within the best interests of the larger community of
patients. Reeves, for example, was committed to trying to
operationalize the CFS case definition (Reeves et al. 2003),
and when he argued for the use of instruments and cut off
points that broadened the case definition, he did not recognize that this might inadvertently bring people into the
CFS category who did not have this illness. Many people
with CFS do experience demoralization and even some
psychiatric symptoms after experiencing the trauma of an
incapacitating illness and then further after experiencing
the trauma of the negative attitudes people have toward
their illness. And yet, there are also many people with CFS
who never experience any psychiatric conditions, so one
cannot conclude that psychiatric conditions are equivalent
to CFS. Certainly, how activists and researchers decide
what is in the best interests of the patient community is a
value laden and challenging task, and as is evident from
this article, constituent groups often disagree as to what
actions are perceived as victimizing and stigmatizing.
123
There are certainly implications for community psychology, and this is well reflected in Sarason’s (1976)
anarchist insight, which suggests that government interventions for social problems can undermine the sense of
community for social change movements. When scientists
such as those at the CDC used methods in the early 1990s
that underestimated the prevalence of CFS, community
researchers worked with advocacy organizations to correct
these biases. The revised prevalence estimates were used
by community activist organizations and policy makers to
advance a more accurate depiction of CFS. When a
broadened case definition was later proposed by the CDC,
it was critical from a science position to challenge these
findings, and ultimately this is critically important from a
practice point of view. From these experiences, I realized
the importance of staying committed to a content area like
CFS for a long period of time and staying true to my values
and beliefs, even if they were not popular. It was also clear
to me that the CFS patient advocacy movement was very
receptive to the role of scientific analysis in better understanding this illness regarding the epidemiologic research
on prevalence and issues involving diagnostic definitions.
Patient groups were energized with the change in leadership at the CDC and began organizing anew to demand
more research funding for the CFS area. The new CDC
leadership has already contacted a number of patient
organizations and the leader of the International Association of CFS/ME to discuss ways to work more cooperatively with these different constituent groups. In addition,
over the past year, a new coalition of CFS patient organizations formed, called the Coalition 4 ME/CFS, to present
a unified voice with common goals and objectives that will
improve the quality of life for patients and their families. In
addition, ten patient organizations signed a joint letter
inviting the CDC to an open dialogue through regular
meetings. The letter and a petition contained nine action
points calling for change in the CDC’s research into CFS.
The efforts to bring about change will continue, but these
developments suggest that the patients’ coalitions were
strengthened by the patient advocacy that ultimately
resulted in changing the CFS leadership at the CDC.
As is argued above, many patients have felt that research
conducted by the CDC fueled the stigmatization of CFS
and contributed to the climate in which the legitimacy of
CFS was questioned. But it is important to recognize that
there are multiple sources of such doubt concerning the
legitimacy of CFS. Books, articles, and even popular radio
talk show physicians continue to discredit the notion that
CFS is a real illness. There will continue to be social
change efforts in the US and other countries to deal with
these forums that trivialize CFS by portraying people with
this serious chronic illness as being a form of hysteria
(Showalter 1997). As Seidman (1988) has written, true
Am J Community Psychol
second order change involves changing shared goals, roles
and power relationships, and little changes when expectations and policies remain intact. Thus, social justice efforts
are needed to focus on systemic change directed toward
those responsible for creation of norms or policies that
discriminate against or stigmatize marginalized groups
such as those with the illness known as CFS.
I was a witness to many of the events described in this
article, and gained access to a number of policy settings
after engaging in basic research involving epidemiology,
the name change, and issues involving the CFS case definition. Such efforts can ultimately provide researchers with
credibility among their peers, as well as community
activists. For example, findings from the community-based
epidemiology study (Jason et al. 1999) provided the credibility needed for me to be appointed to federal advisory
panels that made recommendations on CFS to the Secretary
of the US Department of HHS, as well as to be elected as a
board member of the major CFS scientific organization.
Gaining access to those critical constituent gatekeepers can
provide unique opportunities to influence public policy.
Acknowledgments I appreciate the suggestions and editorial help
of Molly Brown, David Glenwick, Meredyth Evans, Abby Brown,
John Moritsugu, Nicole Porter, Jessica Hunnell, Valerie Anderson,
Athena Lerch, Jocelyn Droege, Laura Hlavaty, Chris Keys, G. Anne
Bogat, Judith Richman, Brad Olson, Jacob Tebes, Jo Ellyn Walker,
Steve Everett, and Daryl Isenberg. A particular note of thanks to
Dorothy Wall who helped me link this work to the larger patient
advocacy movement.
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