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/CFS at the CDC she co-authored almost 50 papers and lead the effort to develop gene expression technology and apply to it to ME/CFS. She co-lead the most extensive and complex attempt yet to understand ME/CFS which culminated in the simultaneous publication of the 14 Pharmacogenomic’s papers.
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.
(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.
(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.
(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.