Download Transforming CFS Research

Transforming
CFS Research
Suzanne D. Vernon, PhD
Scientific Director
CFIDS Association
'Tis but thy name that is
my enemy.
Juliet Capulet
“CFS” timeline
No more
“outbreaks”
1956 Outbreak
1956 – an illness
resembling Iceland
Disease in Punta Gorda,
FL; called it epidemic
neuromyasthenia.
Reported by CDC – D.A.
Henderson and Florida
public health officials in the
J Florida MA
High attack rate in
women, no agent
isolated, population study
be determined high
attack rate in surrounding
hospitals.
1984 Outbreak
Physicians reported increased
rate of chronic EBV like illness in
1984-85
CDC initiated an outbreak
investigation
Cases defined as fatigue >1
month, 2 weeks no work, %50
decrease in function.
Findings:
Cases more likely to reside outside
Incline Village (Truckee, CA)
Cases more likely to have elevated
antibodies to EBV, CMV, HSV-1, -2
Cases more likely to have
lymphadenopathy, splenomegaly on
medical record review
Called it CEBV syndrome
CFS Coined in 1988
Expert clinical opinion based on 4 studies published in the early 1980s including
Nevada; renamed CEBV-syndrome to CFS
Case definition
Must have both major criteria of fatigue, exclude medical and psychiatric disease
(new or in medical history)
AND
6 or more of the 11 symptoms plus 2 or more of the 3 physical criteria
OR
8 or more of the 11 symptoms
Symptoms: chills, sore throat, painful lymph nodes, muscle weakness, myalgia,
post-exercise fatigue, headaches, arthralgia, neuropsychiatric complaints, sleep
disturbance, describing the main symptom complex as developing over a few hours
or days
3 signs/physical criteria: low grade fever, tender lymph nodes, pharyngitis
Commonalities
Outbreaks showed high infectivity in closed populations (hospitals,
schools); some outbreaks were on the heels of other outbreaks
(e.g., polio)
Attack rates were high and higher in women (nurses, teachers) and
certain age groups (teens, 30-somethings).
Clinical characteristics similar: low fever, stiff neck, hyperesthesia,
limb pain, post-exertion fatigue, easily brought to tears, relapses and
recurrence of certain symptoms.
Follow-up studies show a certain percentage of people remain sick
with the above symptom complex with some able to return to work
part time and other not at all
Despite epidemiology supporting infectious etiology, most outbreaks
could not isolate agents from a variety of biological samples using a
variety of classical virology approaches
Is CFS A Consequence Following Current
Infectious Disease Outbreaks?
Little Progress for a Big Problem
• The “one and done” type of studies had limited benefit for improving
patient care.
• Studies were hampered by multiple case definitions and lack of
standardized data and sample collection.
• Priorities were driven by “in vogue” hypotheses.
In 2008 We Accelerated the
Pace of CFS Research
Fund innovative studies;
leverage existing data;
strengthen international collaborations;
recruit new talent to the field; and
expand communication among scientists
to share ideas, knowledge and data.
We Networked Scientists
We Worked Closely, Collaboratively
Gordon Broderick, PhD
+ 4 Collaborators
$4.5 million new
funding; 2-3 pubs in
process
Dikoma Shungu, PhD
+ 2 Collaborators
2 CFS pubs + 1 in
review; NIH grant
pending
Bud Mishra, PhD
+ 1 Collaborator
Knowledgebase of
250,000 full-text articles
+ mining tools
Marvin Medow, PhD
+ 2 Collaborators
6 pubs + 1 in review;
possible treatment
strategy for POTS/OI
Kathy Light, PhD
Sanjay Shukla, PhD
+ 2 Collaborators
+ 3 Collaborators
5 Biomarker pubs; clinical
Analyzing first data
study (Pfizer); add’l
on microbiome now
funding (MS + FM); 4
pending NIH grants
In 2011, Research is First
Our Strategy is to stimulate research aimed at
the early detection, objective diagnosis and
effective treatment of CFS through expanded
public, private and commercial investment.
We Have Deepened Our
Expertise
Scientific Director
Scientific Advisory Board
We’ve Learned From and
Partnered With Innovators
We Established the First CFS
Specific Biobank as a Research
Resource
We Engaged Researchers
and Policy Makers
We Are the Leading Source of
CFS Research-Related Information
“Skate to where the puck is going, not where it has
been.” Walter Gretzy to son Wayne
We are prepared to “meet the puck” and lead the
transformation of CFS research. Here is how we will do it.
2011 Research Initiative
We issued a new RFA
that emphasizes
diagnostic markers
and treatments.
Our new policies
require funded
investigators to share
data and intellectual
property.
We are collaborating
with NIH and others
to establish a datasharing platform so
projects are fully
integrated from the
start.
A larger, more valuable
biobank
Participants
from
anywhere in
the world
Subjects and
samples to
match study
needs
VIRTUAL
RESEARCH
CENTER
Partners in
research and
design
Enhanced
research
continuity
Produce A Biomarker “Hit List” to
Drive Research and Innovation
Product of Association-funded
project led by Dr. Bud Mishra
at NYU
Expanded Collaborations,
Tighter Networks
We are working with
several groups to
develop standardized
ways to define and
identify cases and
collect data to improve
comparability of
research across all
settings.
We continue to
foster collaborations
across disciplines,
around the world.
Transforming Research by
Integration
A virtual center to
test hypotheses
and validate
discoveries
Rigorously
selected
investigatorinitiated
projects
Networking with tools
for data collection and
sharing
Data-derived tools to
guide priorities
Transforming our approach to
research, will raise the bar for
the entire field.
It will accelerate progress that
improves patient care and
individuals’ lives.
Our Mission:
For CFS to be widely understood,
diagnosable, curable and preventable.
“The best time to plant
a tree was 20 years ago…
or today”
The need has never
been greater and the
opportunity
never more
pivotal.