An Interview with Suzanne Vernon, Ph.D, the Scientific Director of the CFIDS Association of the America by Cort Johnson (11/07)
On November 7th, 2007 the CFIDS Association of America's decision to
dramatically revamp their
research program culminated in the hiring of their first
Scientific Director, Dr. Suzanne Vernon.
Why now? The CFIDS Association of America believes it's time to make a major effort to get the word out about ME/CFS to a research community that has not always embraced it. Intriguing research opportunities now abound but ME/CFS's multi-systemic nature has made it difficult for it to fit into the traditional boxes medical researchers are familiar with and funding remains very low. The Scientific Director's job is to present the promise of the ME/CFS research field in such a way that researchers 'get it' and feel compelled to join it.
For their first Scientific Director the CFIDS Association of America has
chosen someone who's proven adept in thinking 'outside of the box'. During
the eleven years Dr. Vernon worked on ME/
As Scientific Director Dr. Vernon will have a lot on her plate. She’ll be reworking and managing the CAA’s research program, interacting and collaborating with researchers, documenting research efforts, interacting with government officials, the media, health care providers and patients.
In this interview I talked with Dr. Vernon about her move from the CDC to
the CFIDS Association of America, her ideas regarding the Scientific
Director’s job, and her views on a number of research issues.
The Centers For Disease Control
(1) It’s quite a step from the research lab – where you’ve spent your
career – to the role of Scientific Director – a job focused on overseeing,
advocating for and promoting ME/CFS research efforts. Making this kind of
career change can’t have been an easy decision. What prompted you to take
this step?
Over the past 10 years at CDC, I have had the great fortune of forming
and working with an incredibly innovative and exceptional laboratory and
computational research team but I was ready for my next challenge. I wanted
a greater leadership role and I really wanted to continue making progress
and a difference in CFS.
My role as Scientific Director at The CFIDS Association of America is
perfect since there is plenty of challenge and plenty of room for scientific
leadership and an environment that fosters progress.
(2) How did you get started in the ME/CFS research field?
I was ready for my next challenge. I wanted a greater leadership role and I
really wanted to continue making progress and a difference in CFS.
In 1996 a peer review of CFS research at the CDC recommended that a lab be
established to identify known and possibly unknown pathogens in CFS. I was
working on human papillomaviruses at the time and Dr. Reeves asked me if I would be
willing to establish the lab. I thought that would be an exciting challenge
at an exciting time. Technology was advancing rapidly and we had lots of new tools
in our tool chest. I’m very adventurous when it comes to science and I’d always
wanted to do really cutting edge research, so I jumped at it. It was a whole
new ballgame.
(3) The CDC CFS research team is very diverse. You’ve had mathematicians
and data mining experts as well as geneticists, molecular biologists and
epidemiologists. How did you end up with such a diverse group of people?
With the advent of the human genome, we have more data than we knew how to handle - with genomic techniques we can literally generate millions of data points. This motivated our team to identify the people who knew how to use computers and crunch the information in meaningful ways. There was no way I could go back and learn math and engineering so we put together a team that could help us do that.
(4) The Pharmacogenomic’s studies were a kind of seminal event in
ME/CFS
research. In them you gave three diverse groups of researchers a crack at
all this data. Their efforts resulted in the simultaneous publication of 14
research papers in the Pharmacogenomic’s journal. The techniques you used
and the findings you generated really put ME/CFS in the research limelight. How
did this project come about?
The concept was inspired by a conversation I had with a chemical engineering colleague. I had organized a workshop at The Banbury Center on “integrating disparate data” where for 2 days we listened to the ways and challenges large, complex datasets can be explored. My engineering colleague asked if he could look at data from our CDC studies that led into discussions about science challenges like CASP (predicting protein challenge) and CAMDA (microarray analysis). So, the CDC CFS research group decided to host our own challenge coined C3 (C-cubed) for CFS Computational Challenge. The result was the April 2006 issue of Pharmacogenomics. (Click here for overviews of the Pharmacogenomics Papers)
(5) Had the CDC ever done anything like this before?
Within the CDC this was new and it was a clear demonstration of the power of
sharing ideas and data. The publication of the Pharmacogenomic’s studies in
April of 2006 was the culmination of my CDC career. Everyone in our CDC CFS
research group contributed but more importantly and impressively, so did 15
other investigators. None of these folks were paid but each dedicated almost
a year to see this project to fruition. It also provided the framework for
what I wanted to do next. The Scientific Director position at The CFIDS
Association is the ideal vantage point for implementing such a framework.
(6) You have impeccable credentials – many years working on a high level
on this disease, a long resume, etc. We couldn’t hope for anyone better in
this regard - you immediately bring immense credibility to the CAA’s
efforts. Rightly or wrongly, though, some people are going to have say “But
she comes from the CDC”. There is still a great deal of mistrust at the
patient level regarding the CDC. What do you say to them about your jump
from the CDC to the CAA?
All I can say is that the CDC is an amazing place with amazing people and I
was a happy, fairly compensated government scientist who enjoyed practically
everyday of my 17 year tenure. I don’t know how many people would give that
security up to work for a non-profit that doesn’t have huge cash reserves or
a big endowment! I hope that my commitment to contributing to progress in
the CFS research field as evidenced by my “leap of faith” will give people a
reason to make a leap of faith with me.
CFS RESEARCH
I’m Very Adventurous When It Comes To Science
(7) You’ve been involved in ME/CFS research for quite awhile. How would
you assess the research situation now? We need at least two things for
research to prosper; stimulating ideas and the opportunities to investigate
them. Where are we with regards to ideas and where are we with regard to
opportunities?
There is no shortage of ideas on etiology and pathophysiology as evidenced by the more than 3000 peer-reviewed biomedical articles that can be found on PubMed. We must determine how to use this tremendous knowledge base to help direct further research.
One of the most pressing areas of research is biomarker discovery. Identification of reproducible, robust and validated biomarkers will help us better diagnose and find treatments for CFS.
(8) You said “Now it's time to move the entire field forward by
encouraging the kind of collaboration and communication among scientists
that propels research to the next stage, and to spearhead empiric diagnostic
efforts and new treatment interventions." It sounds like you feel like we’re
on the cusp of something in the research arena. Is that true?
I’ve been accused of being an enthusiastic and optimistic in a addition to a few other things that contradict the skeptical nature of most scientists! But I have colleagues I really respect who help balance my enthusiasm. The human genome has spawned a new era in science that is driving a technologic and computational revolution that is already impacting diagnosis and interventions in other conditions. We can realize the same for CFS.
You can take the scientist of out the laboratory, but you can’t take the
science out of me! Scientists are trained to think and I like to do
“big-picture” thinking. It is this approach that allows me to bridge gaps
and connect dots.
(9) How important is identifying subsets in ME/CFS?
Identifying subsets is very important. I think that has to be done. What
we haven’t quite figured out systematically yet is how to identify them but
we’ve made a great deal of progress, and I think we will be able to do so in
the near future. Once you identify subsets then you can search for
biomarkers. Subsets also help you channel people into better treatment
approaches. I think identifying subsets is absolutely vital.
(10) Some progress in identifying subsets would be good news indeed. Can
you share with us something about that?
We used a combination of symptom and physiological/biological data in the CDC Georgia studies to replicate the empirical delineation approach taken on the Wichita Clinical study and published in the 2006 issue of Pharmacogenomics. We are preparing this manuscript for publication. (Click here for an overview of the Pharmacogenomics subset study)
(11) Researchers have found abnormalities in a number of different
systems. Is CFS a disease of interlocking parts that just somehow stopping
work well together?
I think a lot of what we see in ME/CFS today is a result of multiple system
failures because it is not diagnosed early enough.
(12) A great deal of interest has been focused on the possibility there
is a genetic predisposition to ME/CFS. Where are we now with that idea?
I think the twin studies do show there is a genetic component to CFS. The
genetic contribution, however, is modest as is the case in chronic diseases.
That means that some vulnerability that involves genes but that alone is not
sufficient.
(13) A 2006 CDC study found that early life stresses such as physical or
emotional abuses were a risk factor for ME/CFS. Where do you stand on this
topic?
I think Identifying subsets is absolutely vital...What we haven’t quite figured out systematically yet is how to identify them but... I think we will be able to do so in the near future.
The Principal Investigator for that study is a psychologist and early life
stress is one of her main research interests. We all have to remember that that
what happens early in life does play a role in our health and well-being later in
life. Infection early in life is important. Nutrition early in life has an impact
and environmental and behavioral events do as well. The point is that many early
life events contribute to how well we live throughout life.
(14) I’m beginning to think of ME/CFS as ‘a bit of this plus a bit of
that’. A good number of mild to moderate abnormalities have been documented.
They might help explain me – an upper functioning ME/CFS patient - but can
we explain what’s happened to the really severely ill ME/CFS patient who has
to crawl on his or her knees to get to the bathroom?. Can a series of mild
to moderate abnormalities interacting together account for something as
severe as that? Or are we still missing a big piece of the puzzle?
One approach in science is to look at extremes, e.g., normal tissue versus
tumor. The problem with this design for CFS is that up until recently, it
has been difficult to objectively calibrate severity. It is now possible,
however, to empirically delineate CFS and identify patients based on
severity. This will make identifying distinct and significant markers easier
and help us learn more about why people are sick with CFS. (Click
here for an overview of the empirical definition in ME/CFS)
(15) You said “"There has been tremendous progress made by CFS
researchers around the world in the last decade. We now understand an
enormous amount about the pathophysiology of CFS”. It’s certainly true we’ve
identified a pretty large number of abnormalities in ME/CFS patients. What’s
really missing to me, though, is tracing the ME/CFS patient from point A to
point B; from apparent health one day to a chronic debilitating illness the
next. That’s an amazing jump! Are we anywhere near to understanding how that
occurs?
You are correct that it is important to understand when CFS starts. The infectious and post-infection fatigue models offer the best and most immediate model for understanding the natural history of CFS. We have some clues of why this occurs (e.g., genetic vulnerability) and how this occurs is an area of continued research.
(16) The Dubbo studies have been an important part of that process. In
the Dubbo studies Dr. Lloyd, yourself and others have been examining people
as they come down with ME/CFS after an infection. This seems like such a
promising approach and yet budget cutbacks at the CDC lead them to withdraw
their support. Dr. Lloyd then tried and failed to get these projects funded
through the NIH. If he doesn’t get more funding and it sounds like he’s
about run out of options, that project is over. This is very disillusioning.
The Dubbo studies are very interesting and important. From the beginning Andrew (Lloyd) had a real hard time getting them funded at the levels they should’ve been. These are big studies - they’re very important and they’re very challenging. It may be given the state of CFS funding that this type of study is not the easiest kind to fund. That’s unfortunate. It would be a real shame not to fund at least some parts of them. (Click here for an overview of the Dubbo studies)
The human genome has spawned a new era in science that is driving a technologic and computational revolution that is already impacting diagnosis and interventions in other conditions. We can realize the same for CFS.
(17) You were a pioneer in the gene expression field. We’ve hoped gene
expression would be the key that unlocked the door to ME/CFS. Thus far,
though, while gene expression studies have provided some general results
they haven’t provided the specificity that we’d hoped for. We still don’t
have the key to that door. Where are we with regards to gene expression
research? Are these studies going to play an important role in delineating
ME/CFS?
An understanding of the biology often lags behind technological advances and
gene expression profiling is no exception. Tremendous improvements have
recently been made in gene expression technology. I think that incorporating
these advances in the properly designed study (e.g., collection of serial
samples from the same individual over time, since gene expression is dynamic), will be important
for biomarker discovery and furthering our understanding of the immune
perturbations in CFS and will play an important role in our understanding of
CFS.
(18) An increasing number of studies have focused on the central nervous
system. Is ME/CFS going to be centered there?
We’ve always struggled about what’s primary or secondary in CFS. Clearly the
brain is involved, we just don’t know if it is the cause or a mediator in
CFS. (Click here for overviews on the brains
potential role in ME/CFS)
The Scientific Director’s Job and the CFID Association of
America’s Science Initiative
Creating networks of researchers from around the world that will help us make progress in CFS research is one of my foremost objectives
(19) One of your priorities will be to “organize opportunities for
researchers to share ideas”. The ME/CFS research community consists of
relatively small groups that are scattered both geographically and
theoretically. Kim Mc Cleary said two years is too long now to wait for
researchers to share their ideas at the IACFS/ME conferences. Why is now a
good time to get researchers together more and what will giving researchers more
opportunities to share their ideas accomplish?
The time, medium and opportunity for sharing ideas and information in CFS
have never been better. As I noted earlier in 2005 the CDC CFS Research
Program made the strategic decision to share the dataset from the CDC’s
Wichita Clinical Study for the CFS Computational Challenge with several
investigators outside the CDC. Less than 1 year later we had 14 articles
published in Pharmacogenomics and for CFS, and an unprecedented level of
scientific, medical and media attention. This also became an important
element of the CFS National Awareness campaign. The CFS Computational
Challenge illustrated the type of accomplishments and progress that could be made when ideas and information are shared.
(20) The extent of the Japanese research efforts on ME/CFS was one of the
surprises of the 2007 IACFS/ME conference. Will building a bridge between
East and West be one of your goals?
I attribute the impressive advances made by the Japanese over the past
several years to the strong leadership of Drs. Watanabe and Kuratsune and an
influx of money to support fatigue research in Japan. Creating networks of
researchers from around the world that will help us make progress in CFS
research is one of my foremost objectives. (Click
here for a presentation by Dr. Watanabe at the IACFS/ME conference)
(21) One part of your job description includes ‘documenting the breadth
and depth of studies’. One thing we don’t see much of are papers trying to
‘connect the dots,’ so to speak, between the different areas of ME/CFS
research. Will this be a goal of yours? Will you be releasing position
papers or publishing overviews in peer-reviewed journals?
Supporting research is the only way we will conquer CFS. I think our future is bright.
You can take the scientist of out the laboratory, but you can’t take the science out of me! Scientists are trained to think and I like to do “big-picture” thinking. It is this approach that allows me to bridge gaps and connect dots. I will continue to write and co-author scientific papers, attend and present at scientific meetings, and communicate to the medical and patient communities. In order to continue to be an effective and credible Scientific Director, it is incumbent upon me to stay engaged with my science and medical colleagues working in CFS as well as keep up with the latest advances in broader fields of science and medicine.
(22) Similar abnormalities are being found in ME/CFS and fibromyalgia and
fatigued/cognitively challenged patients in other diseases such as multiple
sclerosis, primary biliary cirrhosis, post-cancer patients and others. We’ve
spoken about collaborating with ME/CFS researchers but what about
collaborating with researchers investigating other cognitively
challenging/fatiguing/ pain enhancing disorders? What about advocating for a
broad effort to delineate the cause of severe fatigue/pain/cognitive
problems in disease?
Research about one disease frequently has applications for another illness, and it’s important to pay attention to what is happening in other areas of science and medicine. Engaging researchers involved in areas that can help us make advances in CFS is important and is one of the objectives I will be working hard to accomplish. (Click here for a paper exploring some of some of the similarities between these diseases).
I hope that my commitment to contributing to progress in the CFS research field as evidenced by my “leap of faith” will give people a reason to make a leap of faith with me as well.
(23) With the NIH’s extramural ME/CFS research program producing fewer
and fewer results more and more calls have come for a Centers of Excellence
(COE) program. These programs would provide core teams of researchers/physicians
to work on this disease. You’ve spent much of your career working in team
oriented environments. Where do you stand on the COE’s?
In
my opinion, there is great value in sharing existing ideas and data and
creating research networks. It may not be prudent to limit this type of
exchange to one type of funding mechanism such as COE’s although I do agree that
bridging basic science, clinical research and patient care is important. (Click
here for more on COE's and ME/CFS)
(24) The CFID's Association of America's goal is to raise $1,000,000 for their new science program.
They still have quite a ways to go - they’re about a third of the way so
far. Aren’t both they and you taking a bit of a risk here. What if they
don’t make it?
The CFIDS Association of America has been a leader in funding CFS research for the past 20 years. It is not risky, it is necessary and supporting research is the only way we will conquer CFS. I think our future is bright.
The CFIDS Association of America is seeking to raise $1,000,000 for their Scientific Initiative.
Click here to learn more about this new effort.