Press Releases
NEW STUDY CONDUCTED BY DEPAUL
PSYCHOLOGY PROFESSOR
BREAKS MYTH OF “YUPPIE FLU”
THE CFIDS
ASSOCIATION OF AMERICA
APPLAUDS RESEARCH PRESENTING
CLEARER PICTURE OF
CHRONIC FATIGUE SYNDROME
Ongoing research study
for people diagnosed with chronic fatigue syndrome
Letters to the Editor
LETTER TO THE EDITOR: Dangers in Collapsing Disparate Syndromes
Book Review
Understanding Chronic Fatigue Syndrome:An Empirical Guide to Assessment and Treatment
NEW STUDY FINDS CFIDS/ME COMMON!
Tired All the Time?A CFS radio program, WEVD in New York city, featured the work
of the Chicago Epi study, and the taped radio program can be heard by opening
the following website:
http://www.cfsaudio.4biz.net/cfsradio.htm
Dr. Fred Goodwin's Radio show The Infinite Mind
A National Public Radio program on CFS. The radio program can be heard
at the following webside:
http://www.theinfinitemind.com/mindprgm.htm
Imagine coming down with a bad case of the flu - the kind where your whole body aches and it's hard to think straight -- and that the flu NEVER GOES AWAY. That's how many people describe what it feels like to live with Chronic Fatigue Syndrome. Guests include author Laura Hillenbrand , explaining why she had to write part of her bestseller, Seabiscuit, with her eyes closed; Dr. Nancy Klimas , professor of medicine and director of the Chronic Fatigue Syndrome research center at the University of Miami School of Medicine; Dr. Gudrun Lange, a neuropsychologist at the University of Medicine and Dentistry of New Jersey; Kim Kenney , president of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America; and singer-songwriter Janis Ian, performing a song that she wrote months after her diagnosis with chronic fatigue syndrome. Plus, Marlene Sanders reports on why some patients and advocates think the name of this illness should be changed. Her report includes interviews with filmmaker Kim Snyder , psychologist Dr. Leonard Jason , and Dr. Anthony Komaroff . And commentary by John Hockenberry.
DePaul University
Media Contact: Roxanne Brown Jahi
312/362-8623
Prevalence of Chronic Fatigue Syndrome is Highest Among
People of Color and Women
A ground-breaking, community-based study of Chronic
Fatigue Syndrome (CFS), headed by a DePaul University professor of psychology,
explodes the myth that individuals with the condition are largely white,
middle-class women who don’t really have a serious malady.
Leonard Jason’s “Community-Based Study of Chronic Fatigue Syndrome,”
which appears in the October 11th issue of the American Medical Association’s
Archives of Internal Medicine, reports that there is greater prevalence
of CFS among African Americans, Latinos and women, and affects 422 of every
100,000 Americans. The rate of prevalence is twice as high as rates previously
reported by the Centers for Disease Control, which means as many as 800,000
people nationwide may suffer from the condition.
CFS is a chronic condition with symptoms that are
severe, but often difficult to detect upon physical examination.
They include debilitating fatigue, headaches and unrefreshing sleep. For
years the condition went undiagnosed or misdiagnosed because physicians
weren’t able to differentiate between common fatigue and CFS.
“This is the first random sampling with full medical
work-up of an ethnically diverse population,” said Jason. “Data from our
study indicate that CFS is one of the more common chronic conditions.”
The random telephone sampling of 28,673 adults
in Chicago not only found the highest levels of CFS among people of color
and women, but individuals with CFS were more likely to have lower levels
of education and occupational status.
According to the study, previous findings that
falsely indicated that patients with CFS come from upper social classes
were based upon those individuals’ access to particular health care settings.
“Studies that relied on referrals from physicians and medical clinics
have under-estimated prevalence because many low-income individuals lack
access to the health care system and many patients with fatigue drop out
of the medical care system,” explained Jason.
The study began with telephone questioning of randomly
selected residents in eight Chicago communities that offered racial/ethnic
and socioeconomic diversity. Those persons who indicated during the survey
that they had suffered from unexplained, persistent or relapsing chronic
fatigue for six months or longer and did not have a disease that might
cause fatigue, were defined as having chronic fatigue syndrome-like illness.
This group participated in the second phase of the study, which included
a detailed medical examination at Mercy Hospital and Medical Center.
According to Jason, more than 90 percent of those sampled and found
to have CFS were previously undiagnosed. “This indicates that there are
many people in the general population who are not currently diagnosed
or under adequate medical care,” he said.
In the community-based study, Latinos demonstrated
the highest CFS prevalence at 726 cases per 100,000 people versus 310
per 100,000 for whites. The Latino population sampled within the study
was primarily comprised of Mexican Americans and Puerto Ricans.
African Americans, previously thought to be far less afflicted by
CFS than whites, account for a prevalence rate of 337 per 100,000.
Jason indicated that the elevated rates of CFS
in African Americans and Latinos may be attributable to poor or deteriorating
health status among under-served ethnic groups. The study indicates that
factors contributing to poorer health status among low-income ethnic groups
may include psychological and social stress, behavioral risk factors, poor
nutrition, inadequate health care, more hazardous occupations and environmental
exposures.
Chronic fatigue syndrome prevalence among women
in the study was considerably higher than for men, with 522 women afflicted
per 100,000 as compared to 291 men per 100,000. The prevalence rate for
women with CFS is higher than it is for AIDS, breast and lung cancer. “When
comparing the prevalence of CFS in women to the prevalence of other diseases,
CFS emerges as a serious women’s health concern,” said Jason.
Jason concludes that greater numbers of people
of color are affected by CFS. In addition, his study indicated CFS is
now one of the more common chronic health conditions. CFS usually affects
people in the prime of their life and, consequently, has a significant impact
on the nation’s productivity. People with CFS have a health condition that
frequently results in marked interruption of work and family life, therefore
the syndrome carries important implications related to public health and
policy.
“It is our hope that these data might influence
funding decisions because current funding for CFS research is less than
$10 million a year, which is small given the dollars devoted to less prevalent
illnesses,” said Jason.
The study was conducted by a team of researchers
from DePaul, Northern Illinois and Northwestern universities, the University
of Illinois at Chicago, and Mercy Hospital and Medical Center. Financial
support for the study was provided by a $2.5 million grant from the National
Institute of Allergy and Infectious Diseases of the National Institutes
of Health.
Jason, leader of the study team, has served
in the psychology department at DePaul University since 1975. During his
tenure at DePaul, Jason has established an impressive record of scholarship.
He is the author of 12 books and more than 300 scholarly articles on
chronic fatigue syndrome, smoking and prevention, media intervention,
community building, school transitions and substance abuse. More information
on Jason’s current work is available at his Web site: http://condor.depaul.edu/~ljason/cfs.
###
Editors’ Note: Reprints of the study are available. Please call Roxanne Brown Jahi in DePaul’s Media Relations Office at 312/362-8623 to request one, or it can be downloaded from the AMA Archives of Internal Medicine web site at www.archinternmed.com.
THE CFIDS ASSOCIATION OF AMERICA APPLAUDS
RESEARCH PRESENTING CLEARER PICTURE OF
CHRONIC FATIGUE SYNDROME
Contact: Renee Brehio
October 7, 1999
704-364-0466
Charlotte, NC—In the 1980s, chronic fatigue syndrome
(CFS) was portrayed as the “yuppie flu,” a relatively rare condition
that affected mostly upper middle class white professionals. Now researchers
at DePaul University have shattered that image. A paper to be published
in the October 11 issue of Archives of Internal Medicine reports that as
many as 800,000 people nationwide may suffer from CFS, twice the number
previously estimated by the Centers for Disease Control and Prevention.
And those at greatest risk are not who you would think. The study,
which used a random sample of individuals in an ethnically and socioeconomically
diverse inner-city community, paints a very different picture of how
race, social class and gender may impact an individual’s chances of developing
CFS.
“For years, this medical condition has been marginalized and
misunderstood,” says Kim Kenney, Executive Director of The Chronic Fatigue
and Immune Dysfunction Association of America. “This crucial piece of research
presents a new ‘face’ for CFS. The high prevalence coupled with the fact
that only 10% of those identified in the study had previously been diagnosed
makes this illness a priority for redoubled research and education efforts
by government and academic institutions.”
There is no known cure for CFS, which also
is called chronic fatigue and immune dysfunction syndrome (CFIDS) and
myalgic encephalomyelitis (ME). Symptoms include debilitating fatigue
that is not improved by bed rest and may be worsened by physical or mental
activity, impairment of short-term memory or concentration, sore throat,
tender lymph nodes, muscle and joint pain and headaches. Symptoms must
be present for more than six months without any other medical explanation.
Individuals with CFS function at a substantially lower level of activity
than before onset of the illness, and many are unable to continue holding
jobs, attending school or caring for themselves or family members.
The CFIDS Association of America, Inc. is
the nation’s leading organization working to conquer chronic fatigue and
immune dysfunction syndrome (CFIDS). Since 1987, the Association has invested
more than $8.5 million in education, public policy and research programs
in its efforts to bring an end to the suffering caused by the condition.
For more information about the study or to receive a copy, call Roxanne Brown Jahi at DePaul University, 312/362-8623. Full text of the study will also be posted on the Archives of Internal Medicine web site at www.archinternmed.com on the morning of 10/11/99.
###
Message Points for CFS Prevalence Study
CFS is a much bigger public health problem than has previously been estimated. Dr. Jason’s research found that as many as 800,000 people nationwide may suffer from the illness, which is twice as many as previously estimated by the Centers for Disease Control.
The DePaul study also dispels the myth of CFS as the “yuppie flu,” mostly affecting upper class white professionals. Dr. Jason found that the condition is most prevalent among minorities and blue collar workers. Latinos are twice as likely to develop CFS as Caucasians.
The high rate among medically underserved ethnic groups is particularly alarming, given that they are the least well-equipped to seek out diagnosis and treatment. Only 10% of all individuals with CFS in the study had been diagnosed.
Dr. Jason’s research found that women have a very high rate of CFS versus men. Compared to other illness rates in women, CFS is 15 times as prevalent as lung cancer and more than 40 times as prevalent as AIDS. This makes it a major women’s health issue.
These findings point toward the need to make this illness a priority for redoubled research and education efforts by government and academic institutions.
Individuals who want more information on CFS can call
the CFIDS Association of America toll-free, 24 hours a day at 1-800-442-3437,
or visit the Association’s web site at www.cfids.org.
New Chronic Fatigue Study Fuels
Debate On Name Change; DePaul
Professor Says Biological Name Taken
More Seriously
July 28, 1999
What’s in a name? Plenty, when the subject is Chronic Fatigue Syndrome (CFS), according to DePaul University psychology professor Leonard Jason, whose recent study suggests that a name change would result in the much-maligned illness being taken more seriously.
An international debate on the issue weighs whether or not CFS’s weak moniker has hampered efforts to gain recognition and government support. Jason was joined by Sigita Plioplys, M.D., a psychiatry resident affiliated with the University of Illinois at Chicago and a research team from DePaul, which set out to determine if doctors’ perceptions of the disease would change if the name were changed.
The team found that when groups of medical trainees reviewed case studies of CFS patients that featured three different names for the disease, their perceptions did change depending on the name the illness was given. The names used in the study were: CFS, Florence Nightingale Disease (FN), named for the public health nurse who served during the Crimean War and was believed to have suffered from chronic fatigue; and Myalgic Encephalopathy (ME), the medically based term used to describe the condition.
More than 100 Chicago medical students and residents responded to questions pertaining to prognosis, correct diagnosis, illness cause and appropriate treatment.
When asked to assess the likelihood
that the patient would improve within two years, 42 percent of the medical
trainees assessing the Florence Nightingale name, and a similar 41 percent
of trainees evaluating the CFS name responded that it was likely or very
likely that the patient would improve. However, only 16 percent of the
students and residents who thought the condition was called
Myalgic Encephalopathy felt
it was likely or very likely that the patient would improve. This finding
suggests that the doctors perceived the ME label as being indicative of
a more chronic and debilitating illness as compared to the labels CFS and
FN, Jason said.
When asked what factors were most likely responsible for the person’s illness, a greater proportion of medical trainees in the ME group attributed the illness to medical causes (39 percent) as compared with trainees in the FN (30 percent) and CFS (22 percent) groups.
"If you have a more medical-sounding name it does seem to change perceptions of the illness," said Jason. "This study provides a much-needed methodology for helping to change the name, and a way to go about it in a scientific, systematic way."
According to Jason, a more biological-sounding name for CFS will be beneficial because people tend to interact in a more sympathetic way when an illness has a name that communicates medical and scientific legitimacy. Also, the perception that CFS is a trivial illness has negatively affected government funding and support services. Jason indicated that more research and studies are needed to erase this myth.
Jason has conducted numerous studies on the prevalence of CFS and has written a book about thecondition.
Other study team members were Renee A. Taylor, a project director affiliated with DePaul’s psychology department; Jennifer Shlaes, a graduate student of psychology at DePaul, and Zuzanna Stepanek, a volunteer research assistant and recent graduate of DePaul’s bachelor’s degree program in psychology.
The study, "Evaluating Attributions for an Illness based upon the Name: Chronic Fatigue Syndrome, Myalgic Encephalopathy and Florence Nightingale Disease," was reported in the July/August 1999 issue of the "Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) Chronicle."
The findings of the study have bolstered Jason’s confidence that CFS will have a new name in the future. "In the next year or two, a new name will come," said Jason. "A consensus is needed on what to change it to, and the scientific community will have to make that decision."
CFS is a chronic condition with symptoms that are severe, but often difficult to detect upon physical examination. They include fatigue, headaches and insomnia. For years the condition went un- or misdiagnosed because physicians weren’t able to differentiate between common fatigue and CFS.
Jason can be reached at 773/325-2018 for more information.
Media Contact: Roxanne Brown Jahi, (312) 362-8623
Leonard A. Jason, Renee R. Taylor, Sharon Song, Cara Kennedy, Danielle Johnson
A recent, provocative article(1) argues that similarities
between 12 syndromes justify classifying these syndromes under a larger
general category, “functional somatic syndromes”. When scientists combine
syndromes as diverse in symptomatology as premenstrual syndrome, multiple
chemical sensitivity and chronic fatigue syndrome (CFS), they give license
to less credible popular writers such as Elaine Showalter, who argue
that alien abductions, satanic ritual abuse, and CFS are similar hysterical
conditions.
Historically, many chronic illnesses have been
difficult to define, particularly those of unknown etiology and nonspecific
and/or variable signs and symptoms.(2) However, it is important to remember
that Multiple Sclerosis (MS) is a neurological disease that, like CFS,
disproportionately affects women. Earlier medical conceptualizations
of MS parallel current psychogenic assumptions about CFS, as MS was
once seen to be caused by stress linked with oedipal fixations.(3)
Wessely, Nimnuan, and Sharpe assert that
core features of the 12 syndromes overlap. This is an overstatement. Fatigue,
the central symptom characterizing CFS -- is included in only six of the
12 case definitions. The authors also argue that their hypothesis is supported
by their observations that patients with one of these syndromes frequently
meet the criteria for another syndrome. In medicine, patients sometimes
have more than one illness, yet few would advocate classifying a patient
with both cancer and heart disease as having only one syndrome.
The authors also contend that medical therapies
for these syndromes have been ineffective, yet they contradict such generalizations
with statements like: "low-dose hydrocortisone therapy is helpful in
the management of chronic fatigue syndrome" (pp. 938). In addition,
the authors’ argument that these syndromes cause "unnecessary expenditures
of medical resources" (pp.936) can have pernicious public policy implications,
as when popular columnists such as Jane Brody cite recommendations like
these when calling for reductions in ‘unnecessary’ research into the etiology
of these syndromes.
There is a clear need to fund basic science research
focussing on issues involving criterion variance, and problems with the
current syndromes might be due to inadequate formal inclusion and exclusion
criteria used to classify patients’ data into diagnostic categories. Criterion
variance is likely to occur when explicit criteria do not exist for diagnostic
categories. (2) For example the US case definition of CFS treats two central
symptoms, post-exertional malaise and cognitive impairment, as optional
rather than required criteria.
Further, the authors mention a strong association
between these somatic symptoms and emotional distress. If people with these
syndromes present physical complaints in order to mask psychological problems,
then there should be an inverse relationship between the number of depression
and anxiety symptoms and the number of reported somatic symptoms. This
relationship has not been found.(4) Biases toward psychiatric explanations
for these syndromes have been filtered to the media, which has portrayed
these syndromes in simplistic and stereotypic ways. Perhaps the dissatisfaction
with medical care that the authors cite as a common theme among patients
with these syndromes, is the stigma they endure due to the trivialization
of their syndromes.
References
1. Wessely S, Nimnuan, C, Sharpe M. Functional somatic syndromes: one
or many? Lancet 1999; 354:
936-939.
2. Jason LA, King CP, Richman JA, Taylor RR, Torres SR,
Song S. U.S. case definition of chronic fatigue syndrome: Diagnostic
and theoretical issues. J Chronic Fat Syn 1999; 5: 3-33.
3. Richman JA, Jason LA, Taylor RR, Jahn SC. Feminist
perspectives on the social
construction of illness states. Heal
Care Women Inter in press.
4. Jason LA, Richman JA, Friedberg F, Wagner L, Taylor RR, Jordan
KM. Politics, science, and the emergence of a new disease: The case
of Chronic Fatigue Syndrome. Amer Psych, 1997; 52: 973-983.
Author Notes
All authors are at DePaul University, Department of Psychology, 2219 N.
Kenmore Ave., Chicago, Il. 60614. Correspondence to Leonard Jason (e-mail:
ljason@wppost.depaul.edu).
Understanding Chronic Fatigue Syndrome: An Empirical Guide to Assessment
and Treatment
CFIDS for Psychologists
a book review
By Katrina Berne, PhD
This book puts CFIDS in terms mental health professionals will understand
Understanding Chronic Fatigue Syndrome: An Empirical Guide to Assessment and Treatment
By Fred Friedberg, PhD, and Leonard A. Jason, PhD
1998, American Psychological Association, Washington, D.C.
$39.95 (Available through booksellers or from the publisher at 800/374-2721)
In the absence of an appropriate resource for understanding chronic fatigue syndrome (CFS), many mental health professionals have fallen prey to the abundant misinformation and myths that surround this mysterious, multi-system illness. Most professional information has appeared in medical rather than psychological literature. This lack of information has created an unfortunate chasm between professionals and their patients. Persons with CFS (PWCs) may complain that they feel misunderstood by their treating psychologists or psychiatrists, the very people who are supposed to understand and offer help. Additionally, the stigmatizing and misleading name "chronic fatigue syndrome" has supported the societal notion that in the absence of a known organic cause, illness is assumed to be "all in the patient's head."
Understanding Chronic Fatigue Syndrome: An Empirical Guide to Assessment and Treatment fills this void by carefully examining the various aspects of this complex disorder. Authors Fred Friedberg, PhD, and Leonard A. Jason, PhD, present accurate information, backed by solid research findings, and offer resources and clinical treatment interventions for psychologists. To their credit, the authors do not seek to justify the illness or to convert "non-believers" but instead to educate. They accomplish this goal effectively by addressing many facets of this debilitating and often disabling disorder, including the limitations and losses experienced by patients and their significant others. Psychologists can play a key role in the assessment and treatment of CFS, helping demoralized PWCs to develop a new sense of personal value, purpose and direction.
This comprehensive, well-organized book is divided into three sections: Overview (History, Definition and Prevalence; Predisposing Factors, and Explanatory Models), Assessment (Measurement of CFS Symptoms, Fatigue Rating Scales, Psychometric Evaluation and Differential Diagnosis), and Treatment (Medical and Alternative Therapies, Cognitive-Behavioral Intervention, Clinical Interview, A Coping Skills Treatment Program, and Service Needs and Community Intervention). Six useful appendices nicely supplement these topics: Case Definitions, Medical Assessment, Symptom Report Form, Fatigue-Related Cognitions Scale, a Four-Stage Model of CFS and a Social Support Scale.
Among the many pertinent issues addressed are prevalence and demographics, the need for more precise diagnostic criteria, inadequate government response, the putative role of viruses as causal agents or epiphenomena, and the possibility that CFS is not a single entity but instead a group of related disorders. The authors discuss the usefulness and limitations of existing medical and neuropsychological tests. They also note that although documented abnormalities exist, findings have been variable among researchers.
Understanding Chronic Fatigue Syndrome offers helpful discussions of similarities and differences between CFS and such other fatiguing disorders as postinfectious Lyme disease, fibromyalgia, environmental illness, irritable bowel syndrome, neuromuscular fatiguing illness, multiple sclerosis, lupus, primary depression, malingering, somatization disorder and generalized anxiety disorder.
The authors put to rest the myth that CFS is a fad diagnosis or a purely psychological phenomenon. They present CFS as an illness affecting both psyche and soma that may best be characterized by its interacting immunological, neurological and psychological aspects. They discuss the relationship of stress to symptoms and to immunological and neurological functioning.
Unlike texts that are primarily problem-focused, Friedberg and Jason's book is solution-oriented. The authors describe primary treatment goals as the determination of appropriate activity level and an increased ability to cope with the illness, in the absence of a cure or universally successful medical intervention. Friedberg emphasizes the need for patient self-monitoring and pacing, and Jason describes his "envelope theory" seeking a balance between perceived energy and expended energy in such a way that tolerance of activity can be increased without producing relapse. Various therapeutic interventions are discussed: cognitive restructuring, memory assistance, coping skills training, stress management, behavior modification, relaxation training, pleasant mood induction and maintenance, activity pacing, life restructuring, graded activity, patient awareness of energy budgeting, social support and online resources. The authors clarify the role of cognitive behavioral therapy (CBT) in CFS, criticizing certain poorly designed studies that have exaggerated its benefits and created misconceptions about what CBT can reasonably be expected to accomplish.
The authors are successful in their mission to provide the knowledge and sensitivity necessary for offering appropriate psychological care to PWCs. It is doubtful that any skeptic could read this book and continue to perceive CFS as a fad diagnosis, a plea for attention or simply a case of primary depression.
Although a scholarly text, Understanding Chronic Fatigue Syndrome is user-friendly and appropriate for both clinicians and psychologically sophisticated PWCs. Psychologists and their patients will benefit greatly from this valuable resource. Patients would be well served by recommending Understanding Chronic Fatigue Syndrome to their mental health professionals.
This article appears in the January/February 1999 issue of "The CFIDS Chronicle", and is copyrighted © 1999 by The CFIDS Association of America, Inc., PO Box 220398, Charlotte, NC 28222-0398 Telephone: 800/44-CFIDS (800/442-3437). It is reprinted here with permission.
In an article published this October in the Archives of Internal Medicine,
a large study by Dr. Leonard A. Jason, et al shows that:
ME "is one of the more common health problems,
The numbers of people suffering are
about double the estimation of the CDC, ME occurs more in women
across ethnic groups, ME is more common among those with lower levels of
education and blue collar workers, and The CDC’s prevalence study left out
huge numbers of ethnic minorities.
In a huge sampling of 128,673 adults in Chicago, the authors have, with one strong paper, disproved the commonly held belief that ME is found mostly in well-educated, high-income, stressed-out women! Jason, et al buried the government’s propaganda of the illness occurring in low numbers, finding a huge 0.4% in their random community-based sample. The previous and erroneous estimates "have been biased by differential access to health care treatment linked with gender, ethnic identification, and socioeconomic status."
In A Community Based Study of Myalgic Encephalopathy, the first paragraph dramatically states the implications of this underestimated and mainly ignored disease. The estimated annual direct and indirect cost to the community for each person with Myalgic Encephalopathy (ME) has been projected to be $9,436. In addition, the quality of life for individuals with ME has been found to be significantly lower than for other chronic illness groups. Since the functional disability associated with ME results in marked interruption of work and family life, the syndrome carries important implications related to public health and policy.
The previously reported prevalence rates did not adequately evaluate ethnicity and had lower rates by half. In addition, British studies did not use medical examinations as part of their study. Earlier studies done both privately and by federal agencies came up with an under-representation because they were often looking at behavioral aspects that prejudiced the studies. This landmark study was carried out in two phases. The first screened 128,673 adults by telephone in a random way (the closest birthday). In phase two, those who tested positive for ME symptoms were given a structured psychiatric interview, comprehensive examinations, laboratory tests, and a medical history. Two medical review boards approved this carefully completed study. An examination for fibromyalgia was included.
Women afflicted with ME were significantly higher, with 522 females per
100,000 versus only 291 males per 100,000. This study illustrates "a serious
women’s health problem. For example, only 12 women per 100,000 have AIDS.
Only 26 women per 100,000 have breast cancer. Only 33 women per 100,000 have
lung cancer. Other findings that emerged included the information that ME
"tends to peak during middle age, was most prevalent in those 40-49 years
old, and least prevalent in 18-29 year olds and in those over 60 years
old. Patients identified were more commonly found to be unemployed or working
part time as well as on disability. The rates for psychiatric diagnoses
were in a minority "confirming previous contentions that ME cannot be entirely
attributable to psychological factors." A majority of 59.3%, in
fact, could not meet a
psychiatric criteria. The "psychiatric comorbidity" was explained by
"psychosocial stress resulting from compromised social and financial
resources and emotional distress emerging from the experience of
physical symptoms and functional impairment."
In previous studies by Dr. Leonard Jason, it was found that Psychosocial Factors Show Little Relationship to Myalgic Encephalopathy Recovery (J Psych & Behav Sci, 1988[12], Comacho and Jason) and that "purely psychiatric interpretations of CFS contradict a growing body of data that point to a pathophysiological cause and phenomenology..." (Psych Times, July 1999, Psychiatric Aspects of Chronic Fatigue Syndrome, Taylor and Jason). Another study found that the type of test influences a psychiatric label (Psychol & Health, 1998, Comparing the DIS With the SCID: Chronic Fatigue Syndrome and Psychiatric Comorbidity, Taylor and Jason.
[Ed. Note: This will probably be news for your Congressmen since the CDC still lists the numbers from the flawed 1987 study that gave 4 to 9 per 100,000 people on their web site as well as in their newly printed booklets from both the NIH and CDC. Dr. David Satcher was told of this at the Spring 1999 CFSCC meeting. It has been five months and nothing has changed, although Dr. Satcher said in response to Tom Hennessey, "There is no excuse for the government to put out incorrect information." Letters to your congressmen about this new information won't hurt. It would help us if the NCF was mentioned as your source of information.] ¯
According to a recent National Sleep Foundation poll, one in five Americans says they're so sleepy during the day that it interferes with their activities. Could you use more z's? Lifetime Online spoke with the experts to find out how much sleep is enough, how to get what you need and how to tell if that sleepiness could actually be a sign of illness.
It is, therefore, not only fortuitous but doubly welcome that Professor Jason and his colleagues, with their unique background of psychiatric research combined with an innovative epidemiological approach, have come forward to lead us out of the maze. Their meticulous investigation of the historical and contemporary causes of this Slough of Despond can only bring encouragement to present day research workers.
Among some 80 papers were reviewed, the following extracts are given special attention:
This has become seriously flawed, not only by the selection of subjects according to definitions given above but by selection solely from physician referrals. The use of community based studies by Jason et al [1993] using innovative methods such as telephone surveys, followed by careful clinical and psychiatric screening, no longer excluded subjects financially disadvantaged or otherwise aleinated from mainstream medicine. They produced a realistic estimate of prevalence in the USA of 200/100,000 - over ten times the rate initially reported by the Public Health Authorities [CDC] in 1994. Higher prevalence among public health-care workers was also noted. A reassessment by CDC epidemiologists, after changing patient selection to community based surveys produced a tenfold increase over their original [1994] estimate in 19995 and secured the addition of ME/CFS to their list of Priority 1 New and Re-emerging Infectious Diseases in the USA.
The importance of comparison between the symptomatic and organic findings in the two illnesses is stressed. These should include not only measures of severity and frequency, over a time span, of syptoms common to both [e.g. levels of fatigue, post exertion malaise, nausea and alcohol sensitivity etc.] but investigations of hormonal, immunological and cognitive disturbances as well as electrodiagnostic procedures. Underlying infection as a cause of fatigue must not be forgotten. There can be no excuse for imprecise diagnosis where such facilities exist.
Since the 1994 definition has confused ME/CFS with psychiatric illness and other co-morbidities the prescription oof progressive exercise, cognitive behaviour therapy and anti-depressant drugs has become the mainstay of official medical opinion, at least in the UK. Such advice might be appropriate for psychiatrically disturbed sub-groups, but it is highly inappropriate for subjects with ME/CFS, the majority of whom are functioning at or near maximum capacity. Additional exercise may dangerously exceed their energy limits and be counterproductive. Patients with pre-existing depression, who become destabilised at the onset of ME/CFS, will obviously benefit if the more life threatening depression is treated appropriately. Jason and his colleagues stress that all therapy must be tailored to the individual patient.
While some progress has been made, big problems remain. Accurate epidemiological methods which include the whole population are essential for Public Health Authority planning. Accurate definition and precise diagnosis must underlie the evaluation of treatment protocols. There must be and end to fuzzy recapitulation of the neurasthenia concept in relation to ME/CFS. We have to thank Jason and his colleagues for their careful dissection of the hopelessly entangled threads of contemporary thought about ME/CFS. They have wisely selected those strands which must be pulled out from the mass if we are going to disentangle information essential to co-operative research and progress in the future.
Dr. E G Dowsett November 1997
By Susan J. Landers, AMNews staff. July 23, 2001. (http://www.ama-assn.org/sci-pubs/amnews/pick_01/hlsa0723.htm)
amednews.com (the newspaper for America's physcians)
Christine Petty, MD, a family physician in Rockford, Ill., treated a patient for an illness that lasted six years. During that time, the man, then in his 40s, became so disabled he couldn't leave his home. He took a leave of absence from his job. His wife divorced him. Although his condition ultimately improved, his life was nearly destroyed.
Dr. Petty's patient had chronic fatigue syndrome, an illness that is often as devastating as it is puzzling and one for which there are more questions than answers.
Estimates of those with the illness have reached 800,000 in this country alone, according to recent research. But pinpointing its exact symptoms can be as perplexing as CFS itself.
Fatigue is a common complaint. But in the case of this patient, Dr. Petty could pick up signs that his difficulties were different. This patient's fatigue was both bone-crushing and unexplained. He also complained for at least six months of a host of other ills: low-grade fever, muscle aches, sore throat and sleep problems.
While there is a definition for CFS that was developed in 1994 and used by Dr. Petty in her diagnosis, most researchers and clinicians find it flawed. A new one is in the works. It is expected to be ready by 2003.
There is no definitive way to identify CFS. "It's mainly a diagnosis of exclusion," said Dr. Petty. Physicians must first rule out viral causes and cancer. So blood work and a thorough physical exam and good medical history are the first steps to take, she explained.
800,000 Americans, across all ethnic groups, suffer from chronic fatigue syndrome. |
The Centers for Disease Control and Prevention recommends a series of about 15 tests physicians can use to screen for CFS. They include a complete blood count, measures of total protein in blood plasma as well as glucose levels.
Unusual findings in any of the tests could point to a disorder that a physician may successfully diagnose and treat.
However, 90% of CFS patients will test at normal levels, according to the CDC.
After ruling out all other diseases, doctors should consider CFS. But, as with the diagnosis of the illness, there is no definitive treatment.
For Dr. Petty, treatment included providing a lot of support for her patient. Sometimes antidepressants are prescribed, particularly tricyclics to help patients gain more restful sleep.
Holistic management of patients' lives can also be a central element of care, said Dr. Petty. Eating right, getting adequate rest, moderate exercise, controlling stress and maintaining social ties are important considerations, she notes.
Cognitive behavioral therapy in skilled hands may also be included in treatment, according to Anthony Komaroff, MD, professor of medicine at Harvard Medical School.
A commonsense clinical approach is best, said William Reeves, MD, principal investigator of CDC's chronic fatigue syndrome program.
Dr. Petty noted that she doesn't do much referring unless it's to a social worker or a massage therapist. "I don't find infectious disease specialists are particularly helpful with the diagnosis," she said.
The Dept. of Health and Human Services' newly formed Chronic Fatigue Syndrome Coordinating Committee identified primary care physicians as those most likely to care for patients with chronic illnesses such as CFS.
Needless to say, diagnosing and treating a complex case of CFS can consume an inordinate amount of a physician's time, an item in short supply in the current managed care era. CFS also poses a quandary in a medical climate that emphasizes a scientific basis for prevention, diagnosis and treatment.
"While it is pretty clear there are objective, biological things wrong with many patients," said Dr. Komaroff, "the problem is that none has been found to be present in every patient. So we don't yet have the two things that the average doctor and patient are looking for -- a diagnostic test that is sufficiently accurate to be useful and a proven treatment."
As a result, patients with the syndrome must often endure the skepticism of family and friends and even some physicians. Patients and their advocacy groups have become vocal defenders of the physiological basis, even if unknown, of CFS.
Arthur Barsky, MD, a psychiatrist at Brigham and Women's Hospital in Boston, received a rash of angry letters after he and a colleague published a study suggesting that the responses of physicians and others to the diagnosis of a controversial illness such as CFS could cause patients to exaggerate and maintain their symptoms.
Most letter-writers assumed Dr. Barksy was saying the illness was more a state of mind.
But Dr. Barsky wasn't really surprised by the responses to the study published in the June 1999 issue of the Annals of Internal Medicine . "There is a great deal of heat around the status of all these syndromes," he said. "Obviously there are a lot of advocacy groups, and a lot of people feel strongly about whether they are 'real' diseases or not."
And attitudes in general also seem to be changing, according to Dr. Komaroff. He said there is much less skepticism among physicians now than there was a decade ago, before research evidence began to roll in.
Nonetheless, treating patients with CFS might not be every physician's cup of tea, noted Dr. Reeves. Patients with CFS are often very articulate, they don't look sick and they have a lot of complaints, he said. Common complaints and symptoms of patients are often cognitive, so a physician may have a patient who just can't stay on track. "These are hard patients to deal with," he said.
Physicians also need to be wary that they don't attribute all a patient's complaints to CFS. "Women with CFS can get breast cancer just as well as those without," Dr. Reeves said.
If a diagnosis of CFS in adults is controversial, CFS in children is even more so, with many physicians and others questioning whether it exists in children and teens.
David Bell, MD, a pediatrician in Lyndonville, N.Y., is a believer. He was drawn to the issue when a cluster of about 50 cases of CFS occurred in 1985 among children in his rural area of the state, halfway between Buffalo and Rochester. CFS is a diagnosis that physicians often miss in children, he said. And this is a big problem.
Dr. Bell goes about diagnosing the illness a bit differently than do many other physicians. "I disagree that you should rule out every other disease and then you're left with CFS," he said.
"The pattern of fatigue and activity limitation is a little different from other illnesses that cause fatigue," Dr. Bell said. "Associated symptoms of cognitive problems, muscle and joint pain and sore throat and lymph node pain and sleep disturbances make this a unique illness."
The average age of onset was 11 to 12 among a group of children in a study published by Dr. Bell in the May, 2001, issue of Pediatrics .
He reported that 80% of the children made a good recovery. Most took three to four years to recover with nine years being the longest period of recovery. But the remaining 20% of the children are still quite affected, he said.
Many children are unable to go to school because of the severity of their illness, he said, and one of the most important aspects of care is to make sure their education is provided for.
Although schools are required by federal law to accommodate these children, physicians must first make a clear diagnosis of CFS, he said.
The pursuit of a cause and proper treatment for CFS is heating up with a new emphasis by HHS on research. "We are trying to reinvigorate the field now because there are so many new methods for doing genetic analyses and studying the brain," said Eleanor Hanna, PhD, a senior adviser at NIH's Office of Research on Women's Health, which is coordinating the departmentwide CFS initiative.
A new request for research proposals is scheduled to be released shortly, Dr. Hanna said.
Research needs were mapped out during a State of the Science Conference on CFS held last fall in Arlington, Va. The event was sponsored by several of the NIH institutes and offices as well as the CDC.
Participants, including a patient, a community physician and researchers, cited the need for longitudinal studies, studies designed for specific subgroups of patients and on the physiology of pain and sleep disturbances, to name only a few.
Researchers are already using imaging technology to measure brain hormones and are examining the functioning of the immune system. "There is considerable evidence already that the immune system is in a state of chronic activation in many patients with CFS," Dr. Komaroff said.
The CDC will soon begin a national survey to determine prevalence rates. "We will be particularly interested in ethnic minorities and will be looking at adolescents," Dr. Reeves said.
Recent research findings by Leonard A. Jason, PhD, psychology professor at DePaul University in Chicago, threw into question a long-held belief that CFS is most common among white women. His survey of nearly 29,000 Chicago residents found that the illness occurred across all ethnic groups. "Latinos had rates almost twice as high as Caucasians, and African Americans had rates similar to Caucasians," Dr. Jason said.
The search for specific infectious agents that may trigger or perpetuate symptoms of the illness is also ongoing, Dr. Komaroff said. "Although it is still unproven that any infectious agent is the cause of CFS, a number of us think that is a very plausible possibility in many if not all patients."
But when the dust finally clears around CFS, few researchers believe a single, infectious agent will be found to explain all the cases, Dr. Komaroff said.
And many believe that a variety of poorly understood syndromes ranging from CFS to Gulf War syndrome to fibromyalgia and multiple chemical sensitivity may turn out to be one and the same illness.
Another theory is that CFS will turn out to be similar to cancer or heart disease in which a comprehensive term covers many varieties.
"I think what we will eventually find is that there are different pathways and different subtypes, some that have immunological problems and some that have no immunological problems and some with other problems," Dr. Jason said.