For our next spotlight series, I took advantage of a recent visit to The Jackson Laboratory by Dr. Zaher Nahle, an award-winning scientist with interdisciplinary training in administration and biomedical research. Zaher is the Chief Scientific Officer (CSO) and Vice President for Research at Solve ME/CFS Initiative (SMCI), and a big proponent of ME/CFS advocacy. We talked about his path through scientific research and into patient advocacy, as well as his opinion on the ME/CFS field and where the current research is going. It was a fascinating insight into Dr. Nahle’s involvement in the field and I think the ME/CFS community will find this interview very interesting! 

Hey, Zaher! Thanks so much for taking the time to meet with me. You have your Ph.D. and have previously served as a principal investigator leading scientific research. Can you tell me a little bit about yourself and your scientific background?

Thanks for meeting with me, Courtney. I did my Ph.D. at Cold Spring Harbor in Biology and Biophysics, and my thesis was on Cancer Genetics, primarily focused on programmed cell death, oncogenes, and tumor suppressors. So, I have a background in cancer as well as in genomic instability. Then I went and did Obesity and Diabetes training for my post-doctorate work. And then when I got my own lab, we worked at the intersection between tumor metabolism and genetics, and used high-throughput technologies, like microRNA and DNA genomics. My lab had projects on the diabetic heart and on cancer, and we are now finding that a lot of these are relevant to the ME/CFS field as well. So that’s my scientific background. Then I transitioned from academia and went to the Harvard Kennedy School to pursue something completely different – to get a Master’s degree in Public Administration, with a fellowship in Public Policy and Management. Then I could combine my scientific background with elements of policy design, and that’s very useful for this field.

That’s quite the diverse background! So then how did you get involved in the ME/CFS field?

Well, after Harvard I was looking to apply my skillset to something meaningful that had purpose. I was about to take a position somewhere else in the NYC area, and that would have paid me much more and was a very visible position. I was flipping through Science Magazine one day, and I saw an announcement for a position working with ME/CFS, and I was offended to be honest with you. I thought I had a pretty good science background and that I knew a lot of stuff, but I had no clue what this disease was. And I’m someone who really ascribes to the idea of asking what you can do; that’s not just a nice slogan but a lifestyle. You have to put some portion of your life, whether it’s one day, or a year, ten years, or even a lifetime – toward the disenfranchised, the obscure and unknown, the enigmatic. So, I started reading more about this, and it intrigued me scientifically. I felt with my background, with the government side and the scientific side, I could spark some kind of innovation in the field. So I contacted the organization – Solve ME/CFS Initiative, and I went to a series of interviews and I liked the people I met with. I thought, this is not a social club; it’s a committed, dedicated group. One thing led to another – and I turned down the other job. I always wanted to work in a framework of science and health and human services in a non-profit field. So that’s how I came into it.

Can you tell me a little bit about what your role is at SMCI?

Yeah, in a small organization like SMCI, people wear many hats. So I am the Chief Scientific Officer for the organization, but I oversee many functions. These include the grants mechanism program that we have, and targeted initiative, which are investments with medical centers and industry. I also oversee a biobank and a patient registry. I do work with the NIH and the CDC, and I sit on many committees and do advocacy on that level with government agencies and other stakeholders. I also conduct a webinar series where we bring education and knowledge to the public. And I’m involved in development elements and cultivation elements of the organization. We try to create a data-driven function where everything is rigorous and supported by data. I also do executive work and the science, but adding value is the core of what we wake up every day to do.

That sounds like a lot! So how are you and SMCI involved in the ME/CFS Center grants recently funded by the NIH?

 We are very fortunate. We try to be a positive force throughout, and have a constructive orientation to everyone doing good work in this space. Our interest is in making everyone prosper, and attracting as many people to the field as possible. So, we were a part of 7 out of 10 applications that went in for the grants, in varying capacities. We are co-investigators for the DMCC center, and also collaborators for the Centers for Solutions, and I’m on the Scientific Advisory Board. We’re also on the Patient Advocacy Committee for the Cornell center. We also collaborate with Derya at this center, although we are not part of it officially but we are affiliated in many ways through collaboration. So, we are involved in many of them. Because of where we sit in terms of our role and function as a non-profit organization dedicated solely to ME/CFS, we try to promote and facilitate the work of all of the centers and act as a bridge. The fact that I am also a scientist can help navigate and drive the science in a certain direction, and that adds value. As you know, this is just the beginning so things will be clearer as we evolve. Our objective is to have these centers prosper and develop, communicate and collaborate, and we’re trying to play that role.

So, changing topics a little bit. What were your impressions of the ME/CFS field when you first got involved?

My impression of it was that this is a wonderful community – a community that has been disenfranchised and abused, essentially, for far too long. And that we must use every iota of our energy to drive knowledge of the etiology and bring some relief. My impression was that there are so many notions and fads and misinformation out there that were created because of lack of attractable and systematic studies. We try to create that structure in our functions and all our activities. And I’ve seen, Courtney, even in the short period of time that I’ve been in the field, an enormous change in attitudes, in commitments, in taking actual steps towards achieving our goals. We are far away from where we want to be – but we have moved a long way. From policy steps at the NIH, to the decision to bolster ME/CFS research in October of 2015, to the establishment of the intramural study, to the center grants now being funded. So, there are lots of steps that I have seen being taken in that short time. For someone who is a patient and who’s sick, though, that might as well be a lifetime. But I’m very optimistic in where we are going.

That’s good, there has been a lot of progress recently. In your opinion, what does it take to be a good advocate for ME/CFS patients?

It’s a combination of things. First, you have to be unbiased in the way that you are advocating. It’s also trying to navigate what can be done in a reasonable amount of time, and setting realistic goals that we can target one after the other. And you have to have clarity about the priorities and the objectives we want to achieve. The challenge we face is that everywhere you look with this disease, there is a problem. There is a problem of dissemination of information, there is a problem with investment and spending from government, there is a problem in the number of people working on the disease and incentives to work on it, there are problems in disability agendas, there are problems in the total history of the disease. So, one way to be a good advocate is to develop a prioritization scheme and target an effect change in a realistic way and work hard at it. One thing we haven’t touched on in this interview is the fact that we are developing a national registry for the disease, which has been an unmet need for a long time. And that is one way to help patients participate in their fate, and in being part of the solution. Because they are the core driver of all of this.  

What do you think are the important advances happening right now in the ME/CFS field? 

There are many. First, that we have stand-alone centers at prestigious universities dedicated to ME/CFS, where you have a lot of eyeballs on the problem and a lot of dedicated resources, people, scientists, and support staff working collaboratively to move forward. Also the fact that we have an international interest in the problem, the fact that we have more visibility either through movies or through publications, or quite frankly through commitment from the NIH. I actually recently was co-interviewed with Dr. Walter Koroshetz, the heads of NINDS, and the commitment he gave and the clarity and need to do something in this disease space, is something we haven’t seen in the past. So, there are many steps, some include these centers, others include commitment by these policy members, and also that the public perception is being affected by a variety of tools and products that are coming to surface recently.

 Any other information you would like to share with the community?

You should follow us on our site, as we do a lot of things as an organization and we collaborate with others in this space. I have a great admiration and respect for your efforts here at JAX. You and Derya are a part of it, and at the end of the day, that’s what will solve this – having committed, serious people, putting their time into a complex problem. It takes a village to do this, and we are in this for the long haul!