(Workshops and International Research Networks) I think is important. The
most important issue at the moment in my opinion is that the empirical
definition for CFS (Reeves 2005) continues to be used. The version on the
website in rich text is easier to read. Tom]
First Follow-up Study of CFS and Chronic Unwellness in Georgia
[..]
"?Evaluate association between medical history, exercise patterns, tobacco
use, and CFS"
------
Clinical behavioral intervention studies will be conducted in collaboration
with Emory University School of Medicine, Bibb County Medical Society, Mercer
School of Medicine, Mayo Clinic, and UK National Health Service. Anticipated
protocol development will begin in late 2010-2011, with studies continuing
through 2013.
?Evaluate cognitive behavioral therapy and graded exercise in participants
?Stratify impact of intervention by various parameters including duration of
illness, onset type, early life stress, psychiatric comorbidity, cortisol
responsiveness, and fMRI changes
==============================
http://cdc.gov/cfs/cfs_strategic_plan.html
Centers for Disease Control and Prevention CFS Public Health Research Program
5-year Strategic Plan
(October 2009)
In November 2008, CDC convened an external peer review panel to examine its
Chronic Fatigue Syndrome Research Program. One recommendation of this panel
was to develop a strategic plan for research. CDC sought broad public input in
the development of its plan, including comments during and following an April
2009 public meeting, discussions with collaborators, and input received at and
following the May 2009 HHS CFS Advisory Committee meeting.
In response to CDC´s request for input to the strategic research plan, from
April 27 through July 30, 2009, we received almost 1,200 items of
correspondence from scientific societies, patient advocacy organizations,
researchers, physicians, and many individuals with CFS and their family
members. Comments specific to the draft could be categorized into the
following topic areas:
.Pathophysiology of CFS
.Causes of CFS
.Diagnostics
.In-hospital and pharmacologic studies
.Treatment and management of illness
.Provider and public education
.CFS in children
The current strategic plan addresses all of these issues.
Many comments received also raised questions not directly related to the
research plan and pointed out misconceptions about CFS and CDC´s activities.
We are developing a revision to our website to address these questions and
concerns and will also explore other mechanisms to improve our communications
with patients and our partners regarding these important issues.
The CFS Public Health Research Program 5-year Strategic Plan published below
reflects CDC´s goals and planned activities to address this important public
health issue.
I. CFS Public Health Research Program Strategy
CFS is a complex illness representing alterations in multiple ecologically and
biologically interrelated homeostatic systems. CFS is clinically heterogeneous
and comprised of subtypes. CFS is not the result of a single mutation or
simple environmental factor but likely arises from a combined action of many
genes, environmental factors (including infection), and risk conferring
behaviors. CDC´s CFS Public Health Research Program´s 5-year strategic plan
takes into account recommendations of the November 2008 Peer Review Panel,
comments solicited from stakeholders, and discussions with collaborators. As
noted by the Peer Review Panel´s report and in alignment with CDC´s public
health mission, program strategy has successfully focused on obtaining
baseline information necessary to plan interventions and to qualitatively and
quantitatively measure associated outcomes. These activities complement
clinical research initiatives that focus on the causes, consequences, and
treatment of CFS and related diseases, such as those sponsored by the National
Institutes of Health (NIH) and other research organizations. CDC has ongoing
collaborations with these organizations and plans to strengthen these
collaborations further, as recommended by the Peer Review Panel.
Over the next five years, the CFS Public Health Research Program strategy will
follow an interactive, biosystems model approach with increasing emphasis on
translational research that involves the design, implementation, and
evaluation of clinical, educational, and public health interventions. By
conducting public health research that leads to control and prevention
strategies, the overarching goal is to reduce the morbidity associated with
CFS (and similar medically unexplained chronically fatiguing illnesses) and to
improve the quality of life of persons with these illnesses.
II. CFS Public Health Research Program Goals - What CDC desires to accomplish
1.Refine understanding of the etiologic pathways involved in CFS in order to
improve diagnosis and to identify therapeutic targets
?Identify risk factors related to constellations of clinical attributes (i.e.,
subsets of CFS)
?Identify psychosocial, clinical, and laboratory biomarkers associated with
the clinical course of CFS and subsets of the illness
?Measure neuroendocrinologic, metabolic, immunologic, and infectious
characteristics of CFS to identify potential diagnostic and therapeutic
targets for various subsets of the illness
?Elucidate pathophysiologic mechanisms associated with symptoms and subsets of
the illness
?Develop collaborative data-sharing networks to extend knowledge concerning
CFS
2.Improve clinical management of CFS patients by developing and providing
evidence-based educational materials that address evaluation and clinical
management of CFS
?Develop international consensus regarding diagnosis of CFS in clinical and
research settings (i.e., research, clinical, pediatric/adolescent case
definitions)
?Develop international consensus regarding management of CFS and future
research direction
?Provide current evidence-based information on diagnosis and management of CFS
to health care providers, persons with CFS and their caregivers, and evaluate
associated outcomes
?Evaluate effects of access, utilization, and quality of health care on
clinical course of the illness
3.Improve diagnosis and management of CFS through basic research
?Collaborate to establish an international CFS research network
?Collaborate to conduct clinical intervention trials
4.Move CFS into the mainstream of public health concerns
?Develop collaborations with national, state, and local public health
authorities
?Provide current evidence-based information concerning CFS to federal, state,
and local public health authorities, related government agencies, and HMOs
?Evaluate outcomes associated with dissemination of public health information
III. CFS Public Health Research Program Activities - How CDC plans to meet its
Goals
1.Population-based surveillance
First Follow-up Study of CFS and Chronic Unwellness in Georgia
Field work on the first follow-up study of CFS and chronic unwellness in
Georgia was completed in August 2009. Approximately 80% of those who
participated in the baseline survey also participated in the follow-up study.
Analysis, interpretation, and presentation of findings will occur through
early 2011. Focus of initial analyses will be on information that can be used
to modify provider education activities.
?Determine knowledge, attitudes, and beliefs concerning CFS and the effect on
clinical course of the illness
?Evaluate direct and indirect economic impact of CFS
?Evaluate association of barriers to healthcare utilization with illness
course
?Evaluate association between medical history, exercise patterns, tobacco use,
and CFS
?Refine analysis of allostatic load, cortisol, alpha amylase, inflammation
index, and genetics of CFS
?Evaluate incidence of metabolic syndrome and diabetes
Second Follow-up Study of CFS and Chronic Unwellness in Georgia
Field work on the second follow-up study of CFS and chronic unwellness in
Georgia will begin in mid-2010 and continue into 2011, with analysis of
results occurring through 2012.
?Identify defined subsets of persons with CFS
?Modify provider education activities, evaluate effects of education
activities, and plan intervention trials
?Explore associations between clinical parameters, laboratory biomarkers,
psychosocial, and environmental factors and the risk of incident CFS,
persistent or progressing CFS, and recovery from CFS
?Measure the contribution of electrophysiologically identified sleep disorders
to CFS and to the clinical course of the illness
Mayo Clinic Rochester Epidemiology Project
Retrospective collaborative study will utilize medical records from the
Rochester Epidemiology Project to study risk factors associated with the
incidence of CFS and clinical course of the illness in the population of
Olmstead County. Work will begin in late 2009 with analysis, interpretation,
and publication of data occurring through 2011.
?Categorization of risk factors associated with CFS
CFS Among Adolescents in Foster Care
The Georgia Department of Human Services has requested CDC, in collaboration
with Emory University, to determine the relevance of unwellness among
adolescent wards of the Georgia foster care program as these children manifest
an excess of CFS risk factors. Planning will begin in late 2009, field work on
the initial survey will begin in 2010, initial analyses will be complete by
late 2010, and intervention studies will occur through 2013.
?Identify risk and resilience factors for CFS
Bibb County CFS Patient Registry - initial enrollment
The initial round of patient recruitment will be completed by December 2009.
Analysis, interpretation, and presentation of findings will occur through
mid-2010.
?Identify the most efficacious and efficient manner of identifying, screening,
and enrolling patients in longitudinal registry
?Identify clinical differences between patients enrolled through the registry
and persons with CFS identified in the population-based studies
?Identify provider education issues
Bibb County CFS Patient Registry - first follow-up study
First follow-up and modification of patient registry activities will occur
though FY 2012. In 2013, a provider registry may be considered in another
region of the country.
?Evaluate clinical course and outcomes of intervention protocols
?Identify well-characterized participants for clinical studies
2.Clinical and Laboratory Studies
In-Hospital Clinical Studies
Field work from a three-day, in-hospital study, in collaboration with Emory
University, was completed in July 2009 and analyses will occur through early
2011. Study findings will be integrated into protocols for population cohort
studies, provider education activities, and clinical intervention trials.
?Identify brain regions associated with cognitive deficits in CFS
?Identify neural circuits involved in CFS-associated interoception
?Evaluate HPA axis, autonomic nervous system, immune system, and
neuroendocrine system function during stress
?Identify genetic and epigenetic covariables
?Identify pathophysiologic and clinical subsets presenting as the illness CFS
Laboratory Studies
The integration of laboratory studies with specific CFS research protocols
helps to clarify associations of behavioral and environmental risk factors
(including infection) with clinical and psychosocial attributes of CFS, to
identify subsets of the illness CFS, and to identify potential therapeutic
targets.
?Measure neuroendocrinologic, metabolic, immunologic, and infectious
characteristics of CFS
?Evaluate genetics, epigenetics, and gene expression
?Identify potential diagnostic and therapeutic agents
?Evaluate the potential association of human herpes virus 6 (HHV-6) and
xenotropic murine leukemia virus-related virus (XMRV) with CFS using specimens
from well-characterized patients and matched controls
?Maintain a biorepository of clinical specimens collected during population
and clinical studies for in-house and collaborative molecular analyses
?Develop a funding opportunity announcement to explore the application of
novel pathogen discovery approaches to existing, well-characterized clinical
specimens
Clinical Intervention Studies
Clinical behavioral intervention studies will be conducted in collaboration
with Emory University School of Medicine, Bibb County Medical Society, Mercer
School of Medicine, Mayo Clinic, and UK National Health Service. Anticipated
protocol development will begin in late 2010-2011, with studies continuing
through 2013.
?Evaluate cognitive behavioral therapy and graded exercise in participants
?Stratify impact of intervention by various parameters including duration of
illness, onset type, early life stress, psychiatric comorbidity, cortisol
responsiveness, and fMRI changes
Results from the CFS adolescent foster care study will be used to plan a
large-scale longitudinal intervention study that will occur through 2013.
?Identify and target specific risk factors for CFS
Pharmacologic intervention trials will be conducted in collaboration with
partners that may include pharmaceutical companies and academia. Anticipated
protocol development will begin in 2010-2011 and studies could occur through
2013.
?Target pathophysiologic pathways involved in CFS
Data Sharing
The CFS Public Health Research Program embraces the philosophy of transparency
in the preparation, dissemination, and use of scientific information,
including large datasets. A recent example of this approach resulted in the
publication of a collection of findings and advances that could not have been
made by any one research organization alone. The CFS Public Health Research
Program is committed to working with the Office of Science and Technology
Policy, the Department of Health and Human Services, CFS research colleagues,
and others, to develop working policies and procedures to implement these
data-sharing goals while maintaining appropriate protection for all research
study participants.
3.Educational Intervention and Research
DocStyles
DocStyles is a CDC sponsored national survey to aid in understanding
healthcare providers´ knowledge, attitudes, and beliefs concerning CFS. CDC
anticipates receiving an analysis database in October 2009, based on questions
in the current DocStyles survey, and publishing the results in early 2010.
?Design educational interventions and evaluate their efficacy
?Develop questions for next DocStyles survey
CDC CFS Website
Based on statistical and data mining analysis of website utilization patterns,
a new CDC CFS website is under design and should be operational in late 2009,
with two additional major revisions anticipated by 2013. Beginning in late
2009, CDC will also explore links with other websites including those of state
and city health departments, Medscape, and WebMD.
?Detailed analyses of public and professional user needs
CFS Provider CME
CDC anticipates continuing the CME component of provider education for primary
care physicians, nurse practitioners, physician assistants, and allied health
professionals. In 2010-2011, the current courses will be revised.
?Design and implementation of a more focused set of CFS continuing education
courses
Pilot Health Care Provider Education
Partnerships formed with healthcare providers participating in the patient
registry in Bibb County will provide an opportunity to conduct a focused
community health care provider education and intervention study.
?Engage CSTE and state and local health departments in the development of a
CFS toolkit and orchestrate its dissemination to public health agencies
?Engage national public health practice organizations, state and local health
departments, and HMOs
4.Workshops and International Research Networks
International Workshop - Clinical Management of CFS
The aim of this workshop, anticipated to be held in 2010, is to establish a
collaborative international consortium of investigators who will present and
discuss evidence- and practice-based findings related to the treatment, and
management of CFS.
?Publish management guidelines applicable to practicing health care
professionals in the treatment of CFS
?Establish a network of investigators, clinicians, and others who will meet
regularly to discuss clinical management issues pertinent to CFS and related
illnesses
International Workshop - CFS Case Definition
CDC convened an International CFS Study Group that met in 2000, 2001, and
2002, and in 2003, published recommendations to guide systematic and
reproducible application of the case definition. In 2010, CDC anticipates
convening an international workshop to discuss research and clinical CFS
diagnostic criteria for adults and children.
?Develop consensus as to status of the published 2003 Study Group
recommendations
?Develop consensus as to an appropriate CFS case definition for health care
providers
Page last modified on October 23, 2009
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