Table Of ContentUnderstanding Chronic
Fatigue Syndrome
A N E M P I R I C A L G U I D E T O
A S S E S S M E N T A N D T R E A T M E N T
F R E D F R I E D B E R G
L E O N A R D A . J A S O N
A M E R I C A N P S Y C H O L O G I C A L A S S O C I A T I O N
W A S H I N G T O N , D C
Contents
FOREWORD vii
Barbara G. Melamed
PREFACE xiii
AC K N 0 W L E D G ME NT S xvii
I
OVERVIEW
Chapter 1. History, Definition, and Prevalence 3
Chapter 2. Predisposing Factors 21
Chapter 3. Explanatory Models of
Chronic Fatigue Syndrome 31
I1
ASSESSMENT
Chapter 4. Measurement of CFS Symptoms 49
Chapter 5. Fatigue Rating Scales 65
Chapter 6. Psychometric Evaluation 79
Chapter 7. Differential Diagnosis in CFS 99
I11
TREATMENT
Chapter 8. Medical and Alternative Therapies 121
Chapter 9. Cognitive-Behavioral Intervention 131
Chapter 10. Clinical Interview With a CFS Patient 169
Chapter 11. An Eight-Session Coping Skills
Treatment Program for CFS Groups 187
Chapter 12. Service Needs and Community Intervention 195
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vi Contents
APPENDIXES
A. Case Definitions of CFS 205
B. Medical Assessment of CFS 213
C. CFS Symptom Report Form 21 7
D. Fatigue-Related Cognitions Scale 221
E. A Four-Stage Model of CFS:
A Coping Tool 223.
F. Social Support Scale 227
REFERENCES 227
AUTHOR INDEX 251
SUBJECT INDEX 259
ABOUT THE AUTHORS 265
Foreword
Unrecognized Illness:
Who Szdffers? What Can Be Done?
hen individuals become ill and are subjected to multiple
tests by physicians, including blood chemistry analyses,
CAT scans, and MRIs, they want to have a medical answer
to their suffering. Many of my chronic fatigue syndrome
(CFS) patients say they would rather have cancer than not
know what was making them feel like they were dying.
With cancer there is a known pathophysiology, even if the
cure (when available) may be painful.
Who Suffers?
PATIENTS
Individuals who have complaints about constant weakness,
fatigue, and sore throats want to be taken seriously. They
may look fine and normal but they describe themselves as
feeling like “death warmed over.” Of great concern to many
is a pronounced cognitive slippage involving loss of mem-
ory and difficulties with sustained attention. Almost all of
these individuals attribute their symptoms to a physical
cause and seek a medical solution.
In the history of medicine, the failure to find an “organic
basis” to a problem typically leads to the conclusion, “It must
be in the patient’s head.” This attitude is the source of much
frustration for patients who are beset with an endless array
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viii Foreword
of varying symptoms that rob them of the predictability of daily life.
Now they find themselves in the awkward position of having to justify
that they indeed have a legitimate problem.
PARTNERS
The patient is not the only frustrated individual. Relationships with
partners and significant others suffer as well. Individuals with CFS are
often asked if they feel “up to” participating in activities. Partners often
assume that they are “too wiped out” and may limit invitations with
other people. Thus, partners are also involuntary prisoners to this dis-
order, not knowing what to do to help or what not to do. This uncer-
tainty may hinder the recovery of their loved one. Sometimes the
partner’s efforts are appreciated, but these efforts may also be seen as
overprotective or patronizing.
PHYSICIANS
In addition, society punishes the physician who is supposed to be a
healer but who is denied the ability to administer effective treatment
or the ”magic pill,” as we might wish. So the National Institutes of
Health, Institute of Allergy and Infectious Diseases admits in its trea-
tise for the physician that “despite multidisciplinary investigations into
the cause of CFS, its etiology remains unknown.”’ Given such limited
knowledge, they recommend a “supportive program of patient man-
agement-including symptom-based treatment, education about the
disease, and regular follow-up visits to rule out alternative diagnoses”
(P. 3).
The healer‘s limited assignment, to educate patients about the dis-
ease and seek out alternative diagnoses, again belies a sense of help-
lessness regarding this entity known as Chronic Fatigue Syndrome.
EMPLOYERS AND SOCIETY
Employers may also lose a valuable resource, in that work environ-
ments usually do not allow flexibility to individuals who can work
only when energy levels permit. Thus, many persons who develop
CFS become frustrated and demoralized in their attempts to maintain
employment at premorbid levels and may have little choice but to
leave their jobs and seek disability benefits.
‘From What Physicians Know Abouf Chronic Fatigue Syndrome (p, 3) by National
Institute of Allergy and Infectious Diseases, 1997, Washington, DC: U.S. Government
Printing Office.
I
Foreword
IX
The tax on society is also great. In addition to paying disability
compensation, health care costs escalate because of physician shop-
ping for a more definitive diagnosis or the elusive treatment that might
work. Society also loses many previously able-bodied individuals who
are excluded from the workplace. The cognitive loss of self-esteem that
accompanies such displacement often results in concurrent depression
in individuals with CFS.
Making Sense of This Illness
WHY WOMEN MAY PRESENT MORE
FREQUENTLY THAN MEN
Nowhere is the issue of women suffering societal biases more perti-
nent than in the interface between medical and psychological prob-
lems. Women are three times more likely than men to receive the
diagnosis of CFS. Gender-related differences are varied, with women
showing more tender lymph nodes, fibromyalgia, and lower physical
functioning; in contrast, men show more pharyngeal inflammation
and a higher lifetime prevalence of alcohol misuse.
Historically, women have had bad public relations about their
medical complaints. Their depiction as hysterical females, with lack of
real symptoms has endured since earliest times.2 Unfortunately, we
are once again in the Dark Ages as women face the cultural debate
over CFS, fact or fiction.
Women may be more likely than men to receive a diagnosis of
CFS. Why? Because women are more verbally expressive regarding
their emotions, they often reach diagnostic criteria for psychiatric
well as medical disorders when concurrent labels are applied. Thus,
we see a threefold ratio of women to men even in areas where com-
munity data suggests equal prevalence.
EPIDEMICS AND CFS
CFS has been identified in both sporadic and clustered cases. In some
instances, localized epidemics have occurred. What constitutes an epi-
demic? Most people think of a calamitous occurrence of deadly infec-
tious disease such as the Black Death. Medical science defines
'From Paralysis to Fatigue by E. Shorter, 1991, New York: Macmillan.
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x Foreword
epidemic as a disease or damaging health event with an unusually
strong adverse effect on the health of the population. It is defined in
terms of geography, and the personal characteristics of those who con-
tract the disease or experience the adverse health event.
Over the past several decades, CFS and CFS-like illnesses have some-
times appeared as isolated epidemics, often affecting schools, hospitals, or
other institutions where there is close contact among members, Medical
investigators surmised that these disease outbreaks must have been pre-
cipitated by an infectious agent. Many research dollars were spent to
investigate possible viral or immune-related problems. Unfortunately, the
heterogeneity of this population of sufferers has obscured the identifica-
tion of a consistent marker for the disease. But well-designed prevalence
studies can inform us of the magnitude of both the sporadic and the clus-
tered outbreaks of CFS. CFS epidemiologist and coauthor Leonard Jason
provides an up-to-date overview of prevalence studies and compares their
findings to popular CFS stereotypes (e.g., yuppie flu).
DISEASE VERSUS ILLNESS
The distinction between disease and illness is also an important con-
sideration in CFS. Disease refers to an entity that physicians diagnose
and treat, whereas illness refers to the experience of disease, including
the feelings relating to changes in bodily states and the consequences
of having to bear that ailment. Because people with CFS feel ill, they
understandably assume that they have a disease. They may suffer
symptoms for some time before seeking medical advice. However, if
medical evaluation reveals no objective markers of disease, this does
not banish their claim to ”feel ill.”
Given patients’ experiences of medical rejection, their concerns
and fears may escalate to anger, which may in turn further affect their
functioning and compromise their immune systems. Although med-
ical science has not yet pinpointed any specific immune deficiencies,
considerable physiologic variability has been found in the sympathetic
and parasympathetic nervous systems of individuals with CFS. This
variability may in part reflect a hypersensitivity to stress that may be
an inherent property of CFS and perhaps a causal factor as well.
THE “SICK ROLE” AND CFS
Parsons and Fox construe illness and health as social dimension^.^
”Falling ill” involves the individual assuming a “sick role.” Doctors are
3”Illness,T herapy, and the Modern Urban American Family” by T. Parsons and R.
Fox, 1952, Journalof Social Issues, 8, 31-44.
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Foreword xi
then sought to return people to their normal physical and social lives.
Yet doctors deem some groups of sufferers as more justified in their
“sick role” than others. So with an illness that professionals themselves
have failed to recognize and treat, it is likely that the CFS sufferer is
not given the recognition awarded others who have illnesses that are
verified by a disease process and legitimized by the physician. Thus, in
desperation, many CFS patients may dramatize their situation in order
that others may grasp their experience and credit them with having a
genuine illne~s.~
What Is the Best Treatment?
In the absence of effective medical treatments or cure, the ability to
adjust psychologically to the illness is an important element of any
intervention. The treatments recommended in this book combine cog-
nitive restructuring, coping skills training, stress management, and
behavior modification. Skillful application of these interventions can
constructively influence the coping abilities and activity levels of the
patient. Significantly, these treatments can also quell the tide ()f
trauma arising from the disabling realities of CFS. In contrast to well-
publicized graded activity treatments, author Fred Friedberg, an expe-
rienced CFS clinician and researcher, believes that patients need to
pace their activity in order to conserve energy and avoid overexertion
and relapse.
Enlarging on this energy conserving strategy, coauthor and
research psychologist Leonard Jason uses the envelope theory as the
basis of a new treat men^^ Envelope theory provides a testable hypoth-
esis that predicts that if the patient’s perceived energy and expended
energy are properly balanced, people with CFS can avoid relapse while
increasing their tolerance to activity. Thus, the appropriate level i)f
activity needs to be assessed person by person. Although the authors
recognize the need for researchers to hone in on clinically important
subgroups of patients who experience this illness, they also applaud
in vivo approaches that capture the ebb and flow of symptoms, activ-
ity, and stress levels for each individual with the illness.
4The Presentation of Self in Everyday Life by E. Goffman, 1971, Harmondswoth,
England: Penguin.
5RecoveringF rom Chronic Fatigue Syndrome by W. Collinge, 1993, New York: The BoJy
Press/Perigee.
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xii Foreword
We have in this refreshing volume a first real attempt to combine
science and therapy to present the state of the art in the assessment
and treatment of CFS.
I highly recommend this sophisticated book to all professionals
working in the field, be they clinicians or researchers. The material
presented will both enlighten and challenge, as well as provide the
most constructive approach to dealing with the symptoms and frus-
trations of these sufferers.
BARBARAG . MELAMEPDH, D
