We are excited to present our second “People in ME/CFS Research” spotlight this week, which is my interview with Dr. Suzanne Vernon. Suzanne is the Research Director of the Bateman Horne Center (BHC), which is also the clinical core for the JAX ME/CFS CRC. At BHC, she is building a research program focused on identifying biomarkers, developing diagnostic tests, and uncovering evidence-based treatments for ME/CFS. She was also instrumental for Dr. Unutmaz’s entry into the ME/CFS field, and for the development of the clinical projects with Dr. Cindy Bateman. I recently called Suzanne to ask about her journey through the ME/CFS field, and her views on the progress being made – below is the full interview.

Hi, Suzanne! Thank you for meeting with me today. Can you tell me a little bit about yourself and how you got involved in researching ME/CFS? What sparked your interest in the first place?

Hi, Courtney! My interest in ME/CFS dates back to 1996, when I was at the Centers for Disease Control and Prevention [CDC]. I had just started there as a new staff member, and the department I worked in was actually in charge of what was then called the Chronic Fatigue Syndrome Program. There were big epidemiological studies going on in that department and there happened to be a peer review of the CFS Program, so external people came in and reviewed what the CDC CFS program was doing. They recommended that the program include a laboratory component to try to identify the cause and biomarkers of ME/CFS. My boss offered the opportunity to run the laboratory program to me, and I jumped on it! To me, it was an incredible opportunity of discovery for ME/CFS, because it was newly described at that time. It was also a great opportunity to do what I love to do – implement powerful laboratory tools and molecular tools and apply them to population-based immunology. And since that point in time, which was 1996, I haven’t looked back!

How did you end up moving from the CDC to the Bateman Horne Center?

My journey in the field of ME/CFS has been an interesting one! I spent 10 years from 1996 to 2006 at the CDC in the ME/CFS program, and I had a number of really great experiences and advances happen while I was there. Then I left the government, and I went to the CFIDS Association, which is now called The Solve ME/CFS Initiative. I became the Scientific Director there, and I started their research program, which had the aim of trying to recruit new scientists into the field. We had a first-of-its-kind, $1 million grant program, which was pretty significant for a small nonprofit organization. The first batch of grants was made pretty soon after I got there, in 2008, and we were able to put this program together and put them out to new scientists. And I think 8 out of the 10 scientists were new to the ME/CFS field, which was great. I left CFIDS in 2015, so again almost another 10 years.

That’s when I approached Dr. Cindy Bateman to set up a clinical research program for ME/CFS. Cindy and I had known each other since 2004 actually. I met her at one of the CFS/ME meetings, and we really connected. It was so clear that it was essential to be able to have scientists work with people like Cindy, who have deep clinical experience, knowledge, and intuition in order to be able to make advances in ME/CFS. So, this was my opportunity, just 2 years ago, to make that connection. The Bateman Horne Center was a new nonprofit, and I was able to figure out how we could get money and work together, and make the kinds of advances that are really only possible in a clinical research setting where you have M.D.s and scientists working together in order to figure out a complex problem like ME/CFS.

What is your role at the Bateman Horne Center?

My role there now is the Research Director. I go back to this idea of trying to attract new scientists, the best and the brightest, into the field. I like doing that and I’m good at that, so attracting them to a place like Bateman Horne Center to do their research on well-characterized patient populations and samples, is to me, one of the most important solutions to ME/CFS. So now as the Research Director, I’m basically formalizing that process. I’m setting up the clinical research core of the Bateman Horne Center so that we are a hub for patients, clinical information, self-reported information, and samples. If you think of how Derya is always saying that the patient is at the center and has the answers; he is absolutely right. We have to be studying the patients that are exquisitely characterized, both at a phenotypic level and at a molecular level.

 Speaking of Derya, how did you begin collaborating with him?

That’s a fun story! I was still the Scientific Director at CFIDS, and I was in San Francisco listening to a pitch from a biotech company, and one of the board members for CFIDS was there, and she had arranged a meeting with Esther Dyson. Esther was just getting out of a Google Health conference, and we sat with her for about an hour and told her the story of ME/CFS and picked her brain on how she could help or get involved. And she said, “you know, you have to meet Derya Unutmaz. Have you heard of him?” And I said, “no, I haven’t.” She said, “I really think you should meet him.” So Derya and I ended up connecting over email, and then we Skyped and I told him about ME/CFS and about the biobank I had set up. And of course, I had done a little homework on him, trying to figure out what he did. And it’s funny, during our conversation with Esther Dyson, she had said “Derya is an amazing scientist, and he does this thing with blood cells, where he profiles them. And he can even tell you how old you are from your blood profile, and he told me I have the profile of a 30-year old. All the more reason to love him.”

So, I told him we had some cells in the biobank which were viable and had been collected from well-characterized patients, and asked if he would be interested in looking at them and applying his techniques to them. I ended up sending him about 25 patient and 25 control patient PBMC blood samples, and he did look at them. From that initial sample set, he got some intriguing preliminary data, intriguing enough to write an R01 to the NIH. Well he got the R01, and he told me it’s actually one of the best scores he’s ever gotten on a grant. So that was the beginning of our relationship and our collaboration, and of Derya’s foray into ME/CFS.

How do you think the ME/CFS landscape has evolved over time, and what do you see for the future of this disease?

I think that some of the most important advances recently have been the patient partnerships and mobilization of the patient community. That is the most significant thing that has occurred over the past 20 years, and it’s really gotten the kind of traction that is needed, and that the field has deserved, in the past few years. With the establishment of platforms like MEAction and with people like Ryan Prior and the Blue Ribbon Foundation, and Jean Brea and Unrest – all of these things are bringing awareness to a disease that has been with us for quite some time but just hasn’t been able to get the traction that it needs in order to be able to get the associated funding that it needs to make the advances that we need. If you think back to HIV and how HIV really ended up getting the money that it needed in order to be able to identify the virus and develop the diagnostic markers and the treatments, it all stemmed from a very powerful advocacy movement. So that’s what I see as the most important change in ME/CFS over the years. Historically, we’ve had efforts to try to mobilize the patient community and advocate on The Hill and have awareness campaigns and public service announcements, but none of them have really gotten the traction that you need to move the needle on funding. We’ve really only recently seen the needle move because of what the patient community has been able to do.

Do you think we have reached a critical tipping point in ME/CFS Research and Recognition?

I’m cautiously optimistic. I still think that we are pushing this boulder uphill and we have a way to go. I’ve heard the tipping point metaphor and even used it myself many times, but I’m cautious to say that we have reached that point. I do think that we’re still pushing the boulder uphill. But we are getting stronger, because together we are stronger, but we have a way to go until we reach a tipping point.

Are there any policies that can be advanced by advocates that will encourage more progress in ME/CFS?

I think that several advocacy groups, like the associations Massachusetts and New Jersey, have had it right the whole time. What they have been advocating for is medical education, so I think the time is right for really educating the medical community about the diagnosis and management of ME/CFS. That is one of the things that we at the Bateman Horne Center are really trying to spearhead, and there are a couple of other efforts around the country as well. We have seen the continuing medical education credit offered to doctors who go to see Unrest. So that is something I think is really critical to help us make the kinds of advances that we need. We just need more people – more doctors, more scientists; and then once we get the doctors on board who can diagnose ME/CFS, then we begin to have this critical mass from the medical community that really are putting well-characterized patients into the research pipeline.

What do you think is one of the most promising areas of research in the ME/CFS field right now?

 I am biased by my own work, so I think some of the most promising areas are beginning to try to objectify and quantify the criteria that defines ME/CFS. We need to be able to develop the tools and the methods that can be used in a clinical diagnostic setting that allows physicians to have the tools they need to be able to say “yes, this is ME/CFS,” or “no, this is something else.” Because right now, they’ve got nothing. And it’s a really hard, laborious process for a doctor who has 7 minutes in a clinical appointment to be able to really decipher what has caused these symptoms and transpired for a patient who may have been sick for several years by the time they get in to see a doctor. I think that is the most important and most critical aspect of ME/CFS right now. Actually, it always has been. Because we have struggled with case definitions and a very heterogeneous patient population and patient samples, the field has really struggled to get to that critical mass when it comes to samples, or scientists, or doctors, who know what they’re working with.

How can researchers work with the patient community and advocates to make sure that their research is truly patient-centered and will benefit the patients directly?

That’s a tough question. I have many friends who are patients, and many of them know exactly how they got sick, and probably why they got sick, and what’s going on with them. It’s really remarkable how much insight the patients have garnered because no one else has. I do think that any researcher who wants to venture into this field, which has so much opportunity for discovery, should start by partnering with a clinician – like Cindy Bateman, Nancy Klimas, or the handful of clinicians out there who have dedicated their lives to this disease, to get started. That’s what we have been trying to do at the Bateman Horne Center – really create that ripple effect. We’ve been able to attract the best and brightest scientists into the field – ie. Derya. And now we need to grow the network of physicians that we know see these patients, and get them on board. And then you have collaborations with the physicians and the clinical researchers to do incredible science. So, it starts with the patients that are part of a clinical core. We have to start somewhere, right? Just a drop of water and the ripple effect it can have, is the image that keeps coming to my mind. Once something is discovered – think about HIV, or Zika Virus, or some of these other discoveries – once that first thing is found, then it really is astonishing how quickly other physicians and scientists get on board to help figure it out. It’s like a thunderclap!

 I love that metaphor! Thanks for talking with me, Suzanne!