Current Grants
______________________________________________________________________________
Maintenance
and Incidence of ME/CFS Following Mono
Principal
Investigators: Leonard A. Jason, Ph.D. and Ben Katz, MD
A grant
funded by the National Institute of Neurological Disorders and Stroke
Abstract
It is
unclear which psychological and biological variables are potential maintenance
factors for ME/CFS following IM because few prospective studies have collected
baseline data before the onset of IM and then followed these subjects
prospectively following the diagnosis of ME/CFS. In our currently funded NIH
study, the focus has been on pre-illness clinical and biological predictors of
ME/CFS development following IM in a diverse group of college students. General
screens of health and psychological well-being, as well as blood, were obtained
at all three stages of the study (Stage 1 - when the students are well; Stage 2
– at the time they are acutely ill with IM, Stage 3 – six months after IM, when
they have either developed ME/CFS or recovered). Wave 1 refers to
data we are currently collecting and Wave 2 will be
funded by the proposed grant and involves a five-year follow-up with the
original Wave 1 subjects. Cohort 1 includes those college students who
developed IM during Wave 1, and preliminary data indicate that these students
showed marked differences at baseline from those who did not develop ME/CFS 6
months following IM. Cohort 2 includes those who did not develop IM in
Wave 1. We expect some of these subjects will develop ME/CFS over time.
Our study will assess both clinical and biological maintenance factors for of
ME/CFS following IM, and determine prospectively the incidence of ME/CFS in a
sample of young adults.
Pediatric
CFS in a Community-Based Sample
Principal
Investigator: Leonard A. Jason, Ph.D.
Project
Director: Michelle Adzido, MA
Co-Investigator:
Ben Katz, M.D.
A grant
funded by the Eunice Kennedy Shriver National Institute of Child Health &
Human Development, NIH
Abstract
Existing
published pediatric epidemiologic CFS studies are similar to the first
generation of adult CFS prevalence studies in that they have had either poor
sampling plans (e.g., recruitment at medical centers; Nijhof
et al., 2011), or systematic biases that excluded certain people such as youth
of lower socioeconomic status and those of color who were less likely to have
access to health care (Dobbins et al., 1997), or failed to include a medical
examination (Jones et al., 2004). We will determine the prevalence of
pediatric CFS in a demographically diverse sample of participants unbiased by
illness, help-seeking behaviors, or differential access to the health care
system. This study will determine the prevalence of pediatric CFS in a
community-based sample, as well as the relative frequency of CFS among various groups
(e.g., different age groups, genders).
A
Prospective Study of CFS Following Infectious Mononucleosis in College Students
Principal
Investigators: Leonard A. Jason, Ph.D. and Ben Katz, MD
Project
Director: Joseph Cotler, Ph.D.
A grant
funded by the National Institute of Allergy and Infectious Diseases, NIH
Abstract
About 12% of
young adults will meet the criteria for chronic fatigue syndrome (CFS) 6 months
following infectious mononucleosis (IM) (Katz et al., 2011). IM appears
to be a predisposing factor for some individuals who develop CFS. Many
candidate psychological and biological risk factors have been
proposed to explain this phenomenon, but almost all lack prospective
data from before the patients became ill with either IM or CFS.
Some students develop IM while in college. Many student health services
have students who use their services when they are medically well (e.g., for
sports-related injuries and birth control). Our study will enroll
Northwestern University (NU) students who use the university based health
services when medically well, as well as after they develop IM and CFS. We will
gather biological and psychological data when students are well, when they
develop IM, and when they develop CFS. At the end of the 3 year recruitment period, we will continue to follow those
who have developed CFS for 12 months. We will collect data regarding
candidate biological and psychological factors thought to be
related to the development of CFS, such as previous stressful life
events, “action proneness”, coping skills, autonomic dysfunction, cytokine
levels and the severity of the IM itself. Our proposed study will compare
these prospective pre-illness (IM) variables to post-illness (IM) data between
students who do and do not go on to develop CFS. This study will be able
to identify risk factors for the development of CFS following IM. We have
the unique ability to implement this prospective study with a “captive” and
high-risk population for the development of IM and CFS.
A Comprehensive Service Delivery Model for Helping People
with Chronic Fatigue Syndrome
(This grant was never funded but it serves
as an example of what could occur for patients with this illness)
Overall
Summary:
Chronic fatigue syndrome (CFS) is a
debilitating illness that affects hundreds of thousands of people in the US. It
is one of the most debilitating medical conditions that affects all aspects of
life, including employment and activities of daily living. To date, no
effective comprehensive treatment and assessment program exists to address both
the medical and social service needs of individuals within the CFS population.
This proposal describes a multidisciplinary, Chronic Fatigue Syndrome
Assessment and Treatment Center where individuals with CFS can be individually
assessed and where treatment can be specifically tailored to meet the unique
needs of the patients. Ultimately, this project will enhance the welfare of
individuals with CFS both directly, through the delivery of services, and
indirectly, through public education and the increased allocation of resources.
There is a need to develop model programs that can ultimately be disseminated
to those individuals with CFS who need these services.
The Center will provide a thorough and individualized
assessment, which will lead to access to medical and social services provided
by practitioners that are specialized in the area of CFS. A comprehensive
treatment plan will be developed for each client based on that individual’s
need, and this might include focusing on increasing the physical, social,
psychological, and occupational functioning of individuals with CFS. The Center
will also provide resources to educate individuals with CFS and their families about
the illness. Based on individual needs, the Center will link individuals with
CFS with needed assistance such as financial assistance, housing, and
activities of daily living. Emphasis will be placed on providing individuals
with CFS with a support network of other individuals with CFS and service
providers. Patients will be empowered by actively participating in the
identification of what is offered in the comprehensive center. Services
available through the Center will be developed through the collaboration of on
site and local health and social service professionals, and in conjunction with
experts in the area of CFS, and guidance through the local CFS self-help
organization.
The Center will also address the needs of individuals with
CFS through advocacy services. This involves educating the public, particularly
medical and vocational service providers, about the nature and treatment of
CFS, and about the services offered by the Center. The Center will work towards
change at a larger level, increasing by its request on behalf of patients, the
provision of effective services and resources for this population. We intend
that these efforts will increase the acceptance and acknowledgement of CFS, and
that the public, both general and medical, will become more responsive to the
needs of individuals with this disabling disease.
Introduction:
Chronic fatigue syndrome appears to be a
heterogeneous disease syndrome that may be triggered by a variety of factors
(Jason et al, 1995). The most prominent symptom is persistent fatigue for
at least 6 months. Other symptoms commonly reported include: mild
fever or chills, sore throats, painful lymph nodes, unexplained generalized
muscle weakness, muscle discomfort, prolonged generalized fatigue after levels
of exercise, generalized headaches, joint swelling, neuropsychiatric
complaints, and sleep disturbances. Relatively few patients are cured,
with most continuing to experience decreases in exercise tolerance and mild
symptoms related to their chronic fatigue syndrome, and these symptoms are
exacerbated during periods of stress and minor illness. Wilson et al.
(1994) recontacted 103 chronic fatigue syndrome
patients after a three and a half year follow-up, and most remained
functionally impaired (only 6 had completely recovered). Chronic fatigue
syndrome is one of the most debilitating medical conditions when quality of
life indicators are measured (Anderson & Ferrans,
1997).
Many physicians continue to believe that most patients with
this disease are suffering from a psychiatric illness. These biases have
been filtered to the media, which has portrayed chronic fatigue syndrome in
simplistic and stereotypic ways. Due to the controversy surrounding a chronic
fatigue syndrome diagnosis, people with this illness are sometimes overwhelmed
with disbelieving attitudes from their doctors, family and/or friends, and many
experience profound losses in their support systems (Jason et al., 1997).
One major consequence is that many patients with chronic fatigue
syndrome feel dissatisfied with their medical care and some have gone outside
traditional medicine to be treated for their illness (Jason,
Ferrari, Taylor, Slavich, & Stenzel, 1996). An additional consequence of these negative
biases is that few resources have been channeled into developing social and
community interventions for this group of individuals. Traditional social
service programs often either refuse to treat people with CFS, as they assume
that if they look healthy, there must not really be anything physically wrong
with them. When treatment is offered, all too frequently the social
service personnel will refer the people with CFS to psychiatric services,
regardless of whether or not these types of psychiatric services might be needed.
Even when social service personnel are sympathetic to the plight of people with
this disorder, they rarely have the knowledge or available resources to
adequately deal with the needs of people with CFS. Many people with CFS
frequently fall through the cracks in the present service delivery
system. There is a need to develop model programs that can ultimately be
disseminated to those individuals with CFS who need these services.
In addition to experiencing a severe decline in their
health and a decrease in their activity levels, many people with CFS experience
financial problems as a result of not being able to work (Heiman, 1994). Loss
of work can be a devastating and demoralizing experience. Many people
with chronic fatigue syndrome believe that there is little hope of finding
employment, particularly employment that has a flexible schedule; people with
chronic fatigue syndrome may have more energy on some days than on
others. Further complicating matters, for those with this syndrome, it is
difficult to know one?s
energy level from day to day. Flexibility at the work site is a key need
for people with chronic fatigue syndrome in search of part-time
employment. Furthermore, many people with chronic fatigue syndrome are
chemically sensitive and require jobs that are relatively chemical free.
For example, a freshly painted office or newly installed carpet might trigger a
severe allergic reaction in a person with chronic fatigue syndrome. A recent
survey found that as many as 40% of people with multiple chemical sensitivities
might have chronic fatigue syndrome (LeRoy, Davis, & Jason, 1996).
Regrettably, there are few job-related programs
for people with chronic fatigue syndrome. Most agencies still are not sure how
to develop supportive programs for people with severe energy problems. Because
people with this syndrome often look ?healthy? when they come into service agencies seeking job counseling
or other services, the service providers often do not understand that, at best,
people with chronic fatigue syndrome might only have a few hours each week to
give to an employer. Full-time employment is not practical for most
people with this syndrome.
Because people with chronic fatigue syndrome are often unable to work, many
find themselves in danger of losing their housing. Some are forced to
move to cheaper dwellings or move back in with their families. We have
learned that some people with CFS have been homeless for periods of time.
Finding sources of income and affordable housing are two challenges that many
people with chronic fatigue syndrome need to cope with while trying to deal
with a severely depleted source of energy.
Individuals with CFS are
overwhelmingly tired, sometimes finding even brief conversations energy
draining. In an effort to conserve energy, particularly during the worst
phases, many isolate themselves from friends, family and work. Because of
difficulties maintaining employment, many CFS affected individuals have fewer
financial resources, and thus they may be forced to seek less than desirable
housing. Feeling ill, isolated, and with few resources, it is not
surprising that many CFS affected people find themselves confronted with an
escalating, downward spiral of negative emotional and physical stressors.
For many CFS-affected people, a one-hour monthly self-help group is all that is
available.
In order to assess the needs of people with CFS, a recent
national survey conducted Jason, Ferrari,
Taylor, Slavich, and Stenzel
(1997) analyzed the utilization of and preference for a variety of services by
people with CFS. It is not surprising that advocacy services were the
highest-rated factor, particularly given the discrimination and negative
attitudes that people with this disorder have to endure. Preferred advocacy
efforts included a telephone hotline service providing immediate advice and
assistance on recovery, an advocacy worker to secure financial resources and
legitimize the service needs of individuals with CFS, and a volunteer care
giver system to provide assistance with daily chores and errands.
Respondents with CFS also made a strong plea for needed education within the
medical field, government, and general public. Educational efforts would
aim to increase knowledge regarding the legitimacy and existence of CFS as a
disease entity. In turn, increased knowledge would increase the quality
of medical care, financial resources, and services offered for individuals with
CFS. Another priority area was self-help groups, which provide emotional
support and current treatment information. This result is consistent with other
studies indicating that individuals with CFS need continued social and
emotional support to cope effectively with their illness. Other areas
identified as being of significant need (e.g., housing, jobs, volunteer
buddies) were also identified, but no services or programs are currently
available in these areas.
Need
for a Comprehensive Center:
At the present time, no
comprehensive model for patients with CFS exists
in the U.S., although there are many excellent programs that do deal with the
medical issues facing these people. In addition, once an effective and
comprehensive model program is implemented, the information gained from such a
program could be used to provide social service personnel appropriate training
so that these support service professionals could be more effective in helping
people with CFS. The need for such information is clearly indicated in two
recent surveys by Heiman (Personal communication, Oct. 20, 1994). He found that
89% of vocational rehabilitation counselors desired more information and/or
professional in-service training about CFS, and 94% of physicians, with CFS
patients, desired more information about the potential
rehabilitation benefits of people with CFS.
Some have argued that a specific agency or service delivery
program should not be targeted toward one particular disorder, as it is better
to deal with the needs of all people with disabilities. The reality is that
there are no agencies that deal comprehensively with the needs of people with
CFS. Other groups with disabilities, for example those with spinal cord
injuries, have been able to develop new service delivery programs (e.g.,
Independent Living Centers) when their needs were not being met by existing
social service programs. When new illnesses have arisen, for example the case
of HIV/AIDS, hundreds of service delivery programs were developed to deal with
the needs of people with this disease, and specific federal legislation was
written to encourage many of these programs.
Some may wonder whether chronic fatigue syndrome is a
potentially reversible disability, for example a medical disorder that will
eventually be addressed by pharmacological intervention. If so, than some might
argue that the involvement of social service
personnel may be phased out as medical progress is made. The prospect for
identifying a single etiological agent is uncertain, but even if were to be
identified, as with HIV/AIDS, there still would be a need for the development
of service programs for those with this illness. Alternatively, if chronic
fatigue syndrome does not have a clear cut etiology but is rather a complex
disorder involving genetic, constitutional, environmental, and psychological
factors, than medication might be palliative but not curative, and the role of
the social service personnel will probably be larger and more enduring,
involving both advocacy and health promotion.
Some might also argue that the development of service
programs might detract from the needed infusion of funds for basic research,
and such research is needed in order to find the cause and cure of this
disease. There is no reason that two separate agendas can
not be pursued, and the appropriations of funds for research and service
programs can co-exist and even compliment each other.
Most importantly, before critical research
breakthroughs occur, there are thousands of individuals who have desperate
needs for services to improve the quality of their lives.
A Proposed Multidisciplinary and Mutidimensional CFS Assessment and Treatment Center:
In order to respond
to the preferences and needs expressed by people with CFS, a demonstration
program needs to be established that provides a place of central access for
advocacy, support, and services, as part of an overall CFS assessment and
treatment center. A center of this type would organize treatment services
and daily living tasks, and act as an advocacy organization to provide needed
comprehensive treatment to assist with management of symptoms of this illness.
A variety of services could be offered at such a center by medical and social
service personnel. A primary-care physician, a nurse, and a psychologist would
be available at the center to see patients. Two full time office managers would
be available to coordinate the following areas: finance/marketing, legal
issues, general assessment policies, triage and referral, housing services,
advocacy and program evaluation. One social worker, one rehabilitation
counselor, one advocate, and one physical therapist would be hired to develop
social service programs. One full-time secretary would be available for record
keeping and appointments. Space for a physician's office, therapist's office,
advocacy worker, rehabilitaiton worker, and physical
therapist, and phones for Hotline, and meeting rooms would be provided at the
Center.
Advocacy services to
counter the discrimination and negative attitudes: An advocacy worker would be hired to help legitimize the service needs
of individuals with CFS. Education within the medical field, government, and
general public that would aim to increase knowledge regarding the legitimacy
and existence of CFS as a disease entity. The advocacy worker will provide
education for individuals with CFS and their families and friends, community
practitioners, and the general public. Education would focus on increasing
understanding of the illness and reducing stigmatization. Physician education
would be a high priority activity. The Center staff would maintain regular
contacts with and encourage participation in the CFIDS Association of America,
Inc., and continuously provide information to the CFIDS Chronicle regarding
Center activities.
One of the first steps in dealing with a disability is to be fully informed
about the nature of one’s disability, services and benefits which are available
and how to access them, laws which protect the rights of persons with
disabilities, and community resources for obtaining needed services. The Center
would maintain a comprehensive resource and reference library and stay updated
on rules and regulations and services of federal, state and local agencies who
serve persons with disabilities. This information would be provided to
patients, families, friends, professionals, and the general public. The Center
would also conduct workshops and seminars, and distribute various flyers and
brochures.
Through involvement in committees and advisory boards,
meetings with agencies and service providers, and working closely with federal,
state, and local officials and representatives, the Center would advocate for
the appropriate changes needed to create a community which allows for the
acknowledgment and provision of resources for individuals with CFS.
Assessment: Patients would
be provided a comprehensive assessment to aid in the selection of an
appropriate intervention program. Continuous multidimensional assessment
would be an essential element of the program, as the disability experience does
not always conform to the methods and requirements of preexisting assessment
practices that medical professionals have been trained to apply. The medical
assessment would consist of a variety of laboratory tests as well as a complete
physical examination, in order to determine what might be the cause of the
fatigue. If necessary, specialized tests (e.g., sleep studies) would be ordered
to determine possible causes of the symptoms. Neurological and psychological
assessments would be administered by a clinical psychologist in order to measure
the degree of cognitive, neurological, and psychological impairment resulting
from CFS. Furthermore, the assessment would measure general emotional
functioning and adjustment to CFS, and determine the appropriateness of
individual psychotherapy, couple and/or family counseling, group therapy,
psychotropic medications, or a combination of these treatments.
Medical and
pharmacological treatment: A physician who specializes in CFS would hold
regular office hours to treat various CFS-related physical illnesses and
symptoms. The physician would also be available to write needed prescriptions
during office hours. A psychiatrist who specializes in treating individuals
with CFS would be available for appointments on a weekly basis in order to
provide individual eclectic psychotherapy, to write prescriptions for
psychotropic medications, and to monitor medication intake. There will be a
list of physicians who have particular expertise on topics such as CFS and
chronic pain, and the Center physician will make referrals to these specialists
if disorders or symptoms are encountered that need these types of
services.
Individual, couples, and
family psychotherapy: A psychologist and social worker will be available for
appointments on a weekly basis to administer various forms of psychotherapy.
Physical therapist:
Physicians often tell patients with CFS to be as active as they can, but
frequently they provide little specific help on what that might be, and no
experience on exactly which exercises will help. The physical therapist will be
available to patients to assess activities that might be engaged in and to
develop individualized programs of activity.
Case Management: A social
worker would be available for full case management of patients with CFS.
Sometimes people with CFS need specific help in locating services and filling
out paper work for services such as public aid or social security
disability. The social worker would be available to insure that the
patients had an advocate who would insure that needed and appropriate social
services were provided.
Structured self-help
educational groups: There will be an ongoing series of six weekly 1 and 1/2
hour self-help educational groups offered at the center for helping individuals
who have been newly diagnosed. The sessions will include: etiological,
diagnostic and theoretical information about CFS; immune system functioning and
enhancement strategies; pain and stress management strategies (including mental
imagery, abdominal breathing, meditation, yoga, biofeedback, progressive muscle
relaxation, and other relaxation techniques); behavioral coping strategies;
information about environmental and structural modification; communication
skills and relationship building; and legal, financial, and political issues
surrounding disability. If enough children and adolescents with CFS are
identified, specific informational groups will be developed for these
youngsters and their parents.
Unstructured self-help
groups: Unstructured self-help groups would also meet on a weekly basis to
provide consumers with a place to express feelings and obtain social and
emotional support from those who share a common illness experience.
CFS mentorship program:
Individuals who have recovered or significantly adjusted to CFS would be
solicited as volunteer mentors for individuals with more severe levels of
disability. Some of the mentors would be assigned to program participants in
independent living situations and will be available for emotional and
informational support regarding CFS.
Volunteer support
program: A volunteer care giver system would provide assistance with
daily chores and errands. The youthful energy of university students would help
persons with chronic fatigue syndrome achieve their independent living goals.
Volunteers would help with errands, housekeeping, and cooking if necessary.
Hot-line referral service:
A telephone hotline service would be developed to provide immediate advice and
assistance on recovery. Hot-line counselors would be provided a referral
booklet containing a listing of all possible referral needs including
alternative medical specialists, physical therapists, nutritionists, and other
mental health workers.
Job assessment, part-time job opportunities, and advocacy to
restructure current job responsibilities to maintain one's employment:
First, there will be an assessment of whether the person's present job
can be kept at present health level, considering all benefits available (sick
leave and ADA accommodations) and type of profession. Second, if the
person with CFS has stabilized and is searching for employment, an assessment will occur (see below). Third, a program
will be established to develop job skills and readiness for a job. It should be
mentioned that SSA does allow people with disabilities to attempt to return to
work, without a reduction in benefits until the
person is capable of functioning independently.
A counselor would be responsible to coordinate and to
conduct an assessment for determining vocational
rehabilitation needs, as appropriate in each individual case. A
comprehensive assessment of the unique strengths, resources, priorities,
interests, and needs, including the need for supported employment would be
performed. A determination of the goals, objectives, nature, and scope of vocational rehabilitation services to be included
in the individualized written rehabilitation program of an individual
would be conducted. The purpose of this comprehensive assessment would be to
obtain information that is necessary to identify the rehabilitation needs of
the individual and to develop a personalized rehabilitation program for that
individual.
The assessment could include, to the degree needed to make
such a determination, an assessment of the personality, interests,
interpersonal skills, intelligence and related functional capacities,
educational achievements, work experience, vocational aptitudes, personal and
social adjustments, and employment opportunities of the individual, and the medical,
psychiatric, psychological, and other pertinent vocational, educational,
cultural, social, recreational, and environmental factors, that affect the
employment and rehabilitation needs of the individual. Dependent on the
individual, the assessment could include an appraisal of the patterns of work
behavior of the individual and services needed for the individual to acquire
occupational skills, and to develop work attitudes, work habits, work
tolerance, and social and behavior patterns necessary for successful job
performance, including the utilization of work in real job situations to assess
and develop the capacities of the individual to perform adequately in a work
environment. The complete and thorough assessment would require between 30 days
and 90 days, dependent on each individual case in order to allow the counselor
to coordinate and obtain necessary information for each client.
The objectives include
developing individually written rehabilitation plans by reviewing
medical, psychological, social, vocational, aptitudes, abilities, and interests
evaluations. Programs will be developed to improve the life style management of
participants. Counseling on the impact of CFS on personal relationships, stress
and relaxation procedures, coping with problems involving memory and
concentration difficulties, job readiness skill attainment, and job placement
counseling will be offered to each participant. A counselor would discuss
eligibility requirements for obtaining social security benefits, and ways to transition
into part-time job opportunities without losing medical and financial benefits
of the social security disability program.
A counselor would be available to conduct disability
awareness training with the employers of the patients. Specific information
about the disability itself and the subsequent impairments and impediments to
the work environment would be addressed. The counselor would provide the
employer with specific job modification and restructuring plans relative to the
individuals needs that can be implemented on the job
and help facilitate the individuals return, or entry, to work. Also,
rehabilitation legislation training (i.e., The Rehabilitation Act, Section 504,
and The Americans with Disability Act) would be given to employers to inform
them of the regulations that govern these laws, and their subsequent
responsibilities. The counselor would serve as an advocate concerning legal
rights, utilization of legal and medical resources available through community
rehabilitation programs (i.e., Access Living and other advocacy groups), and
financial issues (i.e., health insurance, crisis funding, etc.).
Housing resources: The
social worker would establish housing options for people with CFS using section
202. A shared housing program has the potential of providing an inexpensive
place to live for those undergoing a crisis situation. The social worker would
also develop a shared housing program which will involve others sharing their
homes with people with chronic fatigue syndrome.
Other
services to be developed:
In order to bring
support groups to people who are homebound and/or bedridden, a social worker
would provide these individuals computers so that they can participate with
on-line support chat rooms. The Center staff would develop and update a
directory of resources for people with chronic fatigue syndrome.
Conclusion:
A
Multidisciplinary and Multidimensional CFS Assessment and Treatment Center is
needed now to help persons who are very ill, unable to work, and socially
isolated by the debate on specific medical pathology. The proposed Center
will bring together appropriate medical professionals to service patients with
the best available methods, and provide a place to improve those methods.
The Center will also provide a place from which to conduct physician and
therapist education on rehabilitating PWCs, a need stated by those
professionals in a recent survey.
Approaches to treatment must be
comprehensive, addressing a variety of care needs. For example, advocacy
focused on securing appropriate medical treatment and on the allocation of
government resources for treatment has been cited as a high-priority need for
individuals with chronic fatigue syndrome. People with chronic fatigue
syndrome desire an advocacy program in which the
general public and the medical community becomes better educated about the
problems and difficulties associated with chronic fatigue syndrome. Some
patients with chronic fatigue syndrome may need assistance from others in order
to complete daily living tasks. Living arrangements that include
"healthy" individuals to provide for daily, mundane activities may be
needed by people with chronic fatigue syndrome, because weakness from this
illness might prevent them from accomplishing necessary chores. Finally, a
sense of community in which mutual social support is promoted may prevent
isolation, depression, and preoccupation with the illness among patients
chronic fatigue syndrome.
The dearth of service programs developed to date for
patients with CFS might be due to the fact that
many physicians continue to believe that chronic fatigue syndrome is
predominantly a psychiatric rather than a medical disorder. Frequently
physicians treating patients with CFS do not know what to do for their
rehabilitation needs, and they are influenced by the idea that it is a
psychiatric disease, and as a consequence they often make inappropriate
referrals. This Center will be a clear demonstration that there are
constructive, therapeutic actions that can be taken beyond diagnosis. Such a
Center could ultimately become a training site where open-minded physician can
learn to better deal with this disease. We believe that a demonstration program
could help the public and medical personnel better understand how comprehensive
services can be designed and provided to people with CFS. Besides the immediate
help delivered by the proposed Center, it could become a model for Centers
elsewhere on the value of a comprehensive approach in the diagnosis and treatment
of CFS.
References
Anderson, J.S., & Ferrans, C.E. (1997). The quality of life of persons with
chronic fatigue syndrome. The Journal of Nervous and Mental Disease, 185,
359-367.
Heiman, T. (October 1994). Chronic fatigue
syndrome and vocational rehabilitation: Unserved and unmet needs. Paper
presented at the American Association of Chronic Fatigue Syndrome Research
Conference. Fort Lauderdale, FL.
Jason, L.A., Ferrari, J.R.,
Taylor, R.R., Slavich, S.P., & Stenzel, C.L. (1996). A national assessment of the service,
support, and housing preferences by persons with Chronic Fatigue Syndrome:
Toward a comprehensive rehabilitation program. Evaluation and the Health
Professions, 19, 194-207.
Jason, L.A., Richman, J.A., Friedberg, F., Wagner, L.,
Taylor, R., & Jordan, K.M. (1997). Politics, science, and the emergence of
a new disease: The case of Chronic Fatigue Syndrome. American Psychologist,
52, 973-983.
Jason, L.A., Wagner, L., Taylor, R.,
Ropacki, M.T., Shlaes,
J., Ferrari, J.R., Slavich, S.P., Stenzel, C. (1995). Chronic Fatigue Syndrome: A new challenge
for health care professionals. The Journal of Community Psychology, 23, 143-164.
LeRoy, J., Haney Davis, T., & Jason, L.A. (1996).
Treatment efficacy: A survey of 305 MCS patients. The CFIDS Chronicle, 9,
52-53.
Wilson, A., Hickie, I., Lloyd, A.,
Hadzi-Pavlovic, D., Boughton,
C., Dwyer, J., & Wakefield, D. (1994).
Longitudinal study of outcome of chronic fatigue syndrome. British
Medical Journal, 308, 756-759.