Chronic Fatigue Syndrome > CFS 5-year Strategic Plan
Centers for Disease Control and Prevention CFS Public Health Research Progr=
am 5-year Strategic Plan=20
(October 2009)
In November 2008, CDC convened an external peer review panel to examine its=
Chronic Fatigue Syndrome Research Program. One recommendation of this pane=
l was to develop a strategic plan for research. CDC sought broad public inp=
ut in the development of its plan, including comments during and following =
an April 2009 public meeting, discussions with collaborators, and input rec=
eived at and following the May 2009 HHS CFS Advisory Committee meeting.
In response to CDC=C2=B4s request for input to the strategic research plan,=
from April 27 through July 30, 2009, we received almost 1,200 items of cor=
respondence from scientific societies, patient advocacy organizations, rese=
archers, physicians, and many individuals with CFS and their family members=
. Comments specific to the draft could be categorized into the following to=
pic 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 re=
search plan and pointed out misconceptions about CFS and CDC=C2=B4s activit=
ies. We are developing a revision to our website to address these questions=
and concerns and will also explore other mechanisms to improve our communi=
cations with patients and our partners regarding these important issues.
The CFS Public Health Research Program 5-year Strategic Plan published belo=
w reflects CDC=C2=B4s goals and planned activities to address this importan=
t 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 hetero=
geneous and comprised of subtypes. CFS is not the result of a single mutati=
on or simple environmental factor but likely arises from a combined action =
of many genes, environmental factors (including infection), and risk confer=
ring behaviors. CDC=C2=B4s CFS Public Health Research Program=C2=B4s 5-year=
strategic plan takes into account recommendations of the November 2008 Pee=
r Review Panel, comments solicited from stakeholders, and discussions with =
collaborators. As noted by the Peer Review Panel=C2=B4s report and in align=
ment with CDC=C2=B4s public health mission, program strategy has successful=
ly focused on obtaining baseline information necessary to plan intervention=
s and to qualitatively and quantitatively measure associated outcomes. Thes=
e activities complement clinical research initiatives that focus on the cau=
ses, consequences, and treatment of CFS and related diseases, such as those=
sponsored by the National Institutes of Health (NIH) and other research or=
ganizations. CDC has ongoing collaborations with these organizations and pl=
ans to strengthen these collaborations further, as recommended by the Peer =
Review Panel.
Over the next five years, the CFS Public Health Research Program strategy w=
ill follow an interactive, biosystems model approach with increasing emphas=
is on translational research that involves the design, implementation, and =
evaluation of clinical, educational, and public health interventions. By co=
nducting public health research that leads to control and prevention strate=
gies, the overarching goal is to reduce the morbidity associated with CFS (=
and similar medically unexplained chronically fatiguing illnesses) and to i=
mprove the quality of life of persons with these illnesses.
II. CFS Public Health Research Program Goals - What CDC desires to accompli=
sh
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 charact=
eristics of CFS to identify potential diagnostic and therapeutic targets fo=
r 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
Improve clinical management of CFS patients by developing and providing evi=
dence-based educational materials that address evaluation and clinical mana=
gement of CFS
Develop international consensus regarding diagnosis of CFS in clinical and =
research settings (i.e., research, clinical, pediatric/adolescent case defi=
nitions)
Develop international consensus regarding management of CFS and future rese=
arch direction
Provide current evidence-based information on diagnosis and management of C=
FS to health care providers, persons with CFS and their caregivers, and eva=
luate associated outcomes
Evaluate effects of access, utilization, and quality of health care on clin=
ical course of the illness
Improve diagnosis and management of CFS through basic research
Collaborate to establish an international CFS research network
Collaborate to conduct clinical intervention trials
Move CFS into the mainstream of public health concerns
Develop collaborations with national, state, and local public health author=
ities
Provide current evidence-based information concerning CFS to federal, state=
, and local public health authorities, related government agencies, and HMO=
s
Evaluate outcomes associated with dissemination of public health informatio=
n
III. CFS Public Health Research Program Activities - How CDC plans to meet =
its Goals
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 Ge=
orgia was completed in August 2009. Approximately 80% of those who particip=
ated in the baseline survey also participated in the follow-up study. Analy=
sis, 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 o=
n clinical course of the illness
Evaluate direct and indirect economic impact of CFS
Evaluate association of barriers to healthcare utilization with illness cou=
rse
Evaluate association between medical history, exercise patterns, tobacco us=
e, and CFS
Refine analysis of allostatic load, cortisol, alpha amylase, inflammation i=
ndex, 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 G=
eorgia will begin in mid-2010 and continue into 2011, with analysis of resu=
lts occurring through 2012.
Identify defined subsets of persons with CFS
Modify provider education activities, evaluate effects of education activit=
ies, and plan intervention trials
Explore associations between clinical parameters, laboratory biomarkers, ps=
ychosocial, and environmental factors and the risk of incident CFS, persist=
ent or progressing CFS, and recovery from CFS
Measure the contribution of electrophysiologically identified sleep disorde=
rs to CFS and to the clinical course of the illness
Mayo Clinic Rochester Epidemiology Project
Retrospective collaborative study will utilize medical records from the Roc=
hester Epidemiology Project to study risk factors associated with the incid=
ence of CFS and clinical course of the illness in the population of Olmstea=
d County. Work will begin in late 2009 with analysis, interpretation, and p=
ublication 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 collaboratio=
n with Emory University, to determine the relevance of unwellness among ado=
lescent wards of the Georgia foster care program as these children manifest=
an excess of CFS risk factors. Planning will begin in late 2009, field wor=
k on the initial survey will begin in 2010, initial analyses will be comple=
te 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, screenin=
g, and enrolling patients in longitudinal registry
Identify clinical differences between patients enrolled through the registr=
y 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 r=
egion of the country.
Evaluate clinical course and outcomes of intervention protocols
Identify well-characterized participants for clinical studies
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 ear=
ly 2011. Study findings will be integrated into protocols for population co=
hort studies, provider education activities, and clinical intervention tria=
ls.
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 neuroendocr=
ine system function during stress
Identify genetic and epigenetic covariables
Identify pathophysiologic and clinical subsets presenting as the illness CF=
S
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 charact=
eristics 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 xeno=
tropic 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 no=
vel 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, Mer=
cer School of Medicine, Mayo Clinic, and UK National Health Service. Antici=
pated protocol development will begin in late 2010-2011, with studies conti=
nuing 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 la=
rge-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 p=
artners that may include pharmaceutical companies and academia. Anticipated=
protocol development will begin in 2010-2011 and studies could occur throu=
gh 2013.
Target pathophysiologic pathways involved in CFS
Data Sharing
The CFS Public Health Research Program embraces the philosophy of transpare=
ncy in the preparation, dissemination, and use of scientific information, i=
ncluding large datasets. A recent example of this approach resulted in the =
publication of a collection of findings and advances that could not have be=
en made by any one research organization alone. The CFS Public Health Resea=
rch Program is committed to working with the Office of Science and Technolo=
gy Policy, the Department of Health and Human Services, CFS research collea=
gues, and others, to develop working policies and procedures to implement t=
hese data-sharing goals while maintaining appropriate protection for all re=
search study participants.
Educational Intervention and Research
DocStyles
DocStyles is a CDC sponsored national survey to aid in understanding health=
care providers=C2=B4 knowledge, attitudes, and beliefs concerning CFS. CDC =
anticipates receiving an analysis database in October 2009, based on questi=
ons in the current DocStyles survey, and publishing the results in early 20=
10.
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 patter=
ns, a new CDC CFS website is under design and should be operational in late=
2009, with two additional major revisions anticipated by 2013. Beginning i=
n late 2009, CDC will also explore links with other websites including thos=
e 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 prim=
ary 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 co=
mmunity 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 healt=
h departments, and HMOs
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 a=
nd discuss evidence- and practice-based findings related to the treatment, =
and management of CFS.
Publish management guidelines applicable to practicing health care professi=
onals 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 relate=
d illnesses
International Workshop - CFS Case Definition
CDC convened an International CFS Study Group that met in 2000, 2001, and 2=
002, and in 2003, published recommendations to guide systematic and reprodu=
cible application of the case definition. In 2010, CDC anticipates convenin=
g 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 recommenda=
tions
Develop consensus as to an appropriate CFS case definition for health care =
providers
Page last modified on October 23, 2009
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