Communication was central to all of our activities
My first memory of Dennis Mangan came at the end of a long day at a Federal Advisory Meeting for ME/CFS (CFSAC). As the meeting broke up, Dennis strode over, pulled up a chair and motioned for everyone to gather around. He asked what we thought needed to happen. For the next hour or so he sat and quietly, listening to stories of distress, frustration and hope. Never had anyone from the National Institutes of Health attempted to get so close to the patient community. Changes, I thought, were surely in the wind.
After that he started to act. He redid the NIH website, and they became the first federal agency to call chronic fatigue syndrome ‘ME/CFS’. He started a Listserv to be in better communication; he enlarged and revitalized the NIH Working Group (they had their first meeting in a year). Soon we had State of the Knowledge Workshop – put together in collaboration with patients. Throughout, Dennis was open and in communication, and the ME/CFS community embraced him. It was like day and night at the NIH.
Dennis Mangan ended his career at the NIH as the head of the CFS Working Group at the NIH. You could argue that everything in his career lead him there, and that his experiences there have continue to inform his current activities.
With a Ph.D. in biology (dissertation – “Mannose sensitive interaction of Escherichia coli with human peripheral leukocytes in vitro“), Dennis did hard-core immune research for 15 years, before moving to the National Institute of Dental and Craniofacial Resarch (NIDCR) at the National Institutes of Health (NIH).
As director of the Infectious Disease Program NIDCR Dennis engaged in numerous activities including identifying key research areas, designing major trans-NIH efforts on mucosal immunity, biofilms and the microbiome, leading the Human Microbiome Project, liasing with professional groups, developing funding opportunities, etc. A member of Information Technology Advisory Committee, Dennis produced the first Listserv to provide infectious disease researchers with up to date funding opportunities.
At the Office on Research on Women’s Health (ORWH) in 2009 Dennis developed strategic plans, identified opportunities for growth, etc., and chaired the NIH Working group on ME/CFS. His commitment to open and effective communication was put to the test with a frustrated and often suspicious ME/CFS community that ended up embracing him.
Family issues prompted Dennis’s retirement, but he promised to stay engaged with the ME/CFS community, and he has. Now, as he joins the Scientific Advisory Board of the Simmaron Research Foundation, I asked him about the federal government and his work with Simmaron and the ME/CFS community.
“I never left”
When you retired in late 2011 you promised to stay engaged with the Chronic Fatigue Syndrome community and you have. Since then you’ve chaired a session at the FDA Workshop for ME/CFS, become an Advisory Board Member for the Stanford Chronic Fatigue Research Group, a Board Member for the IACFS/ME, and now the Simmaron Research Foundation. That’s a lot of stuff. Am I missing anything?
That pretty much covers it. In addition, since 2011, I took a variety of communication classes so that I might help scientists talk about their work with the public they serve and the people who support their research. Public interactions, of course, have direct application to increasing the awareness of CFS and related disorders.
I give workshops in which the researchers learn to be more conversational, boil down complex data, explain their research briefly (elevator pitches), and talk about research in the form of stories instead of cold facts. Improved communication will, I hope, help science become more transparent to everyone, including news media, legislators, funding agencies, administrators, donors, students, patients, family and friends.
I’m not sure helping out the sometimes surly ME/CFS community would fit into many people’s retirement plans. You could surely have found easier subjects to be engaged with, yet you’ve committed a good chunk of energy to supporting this community. Why? What has made you come back?
I never left. Helping connect the research scientists with the public has been my career for 30+ years. There is much excitement and promise in what is happening in science right now (e.g., genomics, high throughput technologies, regenerative medicine, the microbiome, systems biology) and I see opportunities for that science to have direct impact on our understanding and treatment of CFS. When I retired from civil service as an advisor to the NIH, I continued to talk with patients as well as researchers. By learning more about how to communicate science to the public, I found a way to contribute to the progress in the CFS field.
You’re a past researcher, you’ve checked out the research on ME/CFS as well as disorders allied with it. Is there anything that really pops out for you? That says to you – this is what ME/CFS is all about?
Like many others, I am impressed with the findings related to disorders of the neuro-immune system and infectious diseases studies. They seem to point to an abnormal response of the body to microbes (viruses or bacteria) that might ultimately serve as both biomarkers of disease and targets for treatment. The similarity of some CFS features with other diseases suggests there might be common pathways.
My NIH colleagues and I strived for transparency in order to increase awareness for CFS at all levels of NIH leadership
You were the NIH representative and Chair of the ME/CFS working group at the NIH from 2010 to 2011 – a short time! – but you made a big impact. You enlarged the NIH Working Group on ME/CFS, created a Listserv, changed the name to ME/CFS, remade the NIH website, and communicated, communicated, communicated. It seemed to me that you really had a vision that you wanted to accomplish and a big part of that involved communication. Can you speak about that?
Communication was central to all of our activities. My NIH colleagues and I strived for transparency in order to increase awareness for CFS at all levels of NIH leadership, among researchers and within the patient/advocate communities. We all wanted to advance the science of CFS and to translate basic laboratory research into clinical practice.
As experienced program directors at NIH, we knew that exchange of ideas and scientific debate moves research fields forward. To that end, in cooperation with leadership at the Office of Research on Women’s Health and the Office of the Director, the Working Group designed a unique State of the Knowledge workshop on CFS in April 2011.
The intent was to bring together basic and clinical researchers from many disciplines to share their knowledge and help point to where future research was headed. It truly was a workshop. The meeting generated great discussions and some collaboration. It also emphasized the need for access to common data that spawned the goal of a shared database of clinical information.
The database, which we referred to as the CASA (i.e., home) project, is currently under construction. Simmaron Research, with its wealth of clinical data, is a participating contributor.
Simmaron’s openness to working with other researchers makes them a great partner in studying and treating CFS.
Why did you chose the Simmaron Research Foundation to work with?
The CFS groups that I work with have common features. They all have a passion to solve the mysteries of CFS using the best scientific principles. They all value collaborative and cross-disciplinary research. Simmaron incorporates these values in all their work. The group has limited resources but leverages what they have with other laboratories. In particular some of their biospecimens reach back almost 30 years and when shared with others can have spectacular impact on medical discovery.
Although a small organization, Simmaron offers extensive clinical expertise and biospecimens for medical research. Moreover, their clinics are designed to capture important information about CFS patients that could lead to better diagnosis and treatment. I greatly admire their creative administrative structure, and the connection with a non-profit umbrella organization that maximizes resources and reduces operating expenses.
Simmaron’s openness to working with other researchers makes them a great partner in studying and treating CFS. Simmaron is also committed to developing the next generation of CFS clinical researchers and has established an advanced training fellowship program for physicians. Moreover, Simmaron has helped increase public awareness for CFS in many public sectors.
To my knowledge, never before has CFS taken such a front stage position within the Department.
Dr. Wanda Jones told me earlier this year that significant shifts in the federal governments attitude towards chronic fatigue syndrome (ME/CFS) have occurred, but that we, for the most part, don’t see them, in part because of the ongoing budget situation. Is that your experience? Did you see shifts in how ME/CFS was viewed when you were there?
Wanda Jones was a terrific resource and a friend to me. She worked tirelessly to connect the various DHHS agencies’ efforts to address the needs CFS patients and researchers. She was always down to earth, direct and honest with me, and did not pander to anyone. I used her passion as a building block for my efforts at the NIH. We all wanted more funding for CFS research and to encourage more scientists from multiple disciplines to enter the field.
My guess is that the changes I saw happening at the NIH are also happening at the DHHS now. Deputy Secretary Howard Koh and Nancy Lee, Director of the Office of Women’s Health, are keeping CFS on the “radar screen” at the DHHS. Sometimes even within the government we don’t know what is happening at all the agencies. Koh is working to increase transparency within the DHHS (e.g., when I was there he hosted monthly teleconference calls among the heads of key agencies involved in CFS.) To my knowledge, never before has CFS taken such a front stage position within the Department.
People with ME/CFS look at NIH funding and they, honestly, want to scream. They feel abandoned and angry at the little support the federal government gives to this disorder. It’s not as if we’re alone, though. Fibromyalgia, IBS, interstitial cystitus and other ‘allied disorders’ also get funding that is out of sync with their prevalence and the degree of suffering they cause. These are all complex disorders that primarily affect woman and cause a lot suffering but don’t usually cause death. Why do you think these types of disorders receive low amounts of funding relative to other chronic illnesses?
I know…I received a few of those screams directly…but they did not land on deaf ears! We might be one experiment or observation away from a breakthrough in CFS and every experiment is important. The key to scientific credibility is to have validated biomarkers and targets for treatment.
This is why the XMRV story went viral: we finally had a target. As a result, funding for CFS spiked in 2009 and several grants were awarded to study aspects of XMRV. If we could reduce the scientific complexity of CFS (e.g., by having good biomarkers and targets for treatment), I suspect that more researchers would want to invest a career in studying it. Such knowledge breeds an intellectual feeding-frenzy for research, new researchers and more funded grants.
The NIH never moves as fast as I would like.
If there’s one thing you’d like people with ME/CFS to know about federal government and its approach to chronic illness what would it be?
Patience and persistence is necessary. The NIH never moves as fast as I would like. For example, in the late 1990s, I recommended NIH support more projects on high-throughput sequencing of microbes in order to advance our understanding of both pathogens and the microbes that normally colonize our healthy bodies. NIH leadership, many of my colleagues and some researchers were reluctant to support such projects, labeling them as fishing expeditions in which massive amounts of data would overwhelm existing computer technology, and waste funds and resources.
It took me six years working with likeminded colleagues at the NIH and other agencies to finally see the Human Microbiome Project (HMP) get funded ($173+ million to date). Today, the HMP project is generating new technologies (e.g., faster computing software and hardware), new hypotheses of diseases and conditions (e.g., a better understanding of how gut microbes are involved in allergies and obesity), and a new generation of infectious disease researchers (e.g., Ian Lipkin.)
What could the chronic fatigue syndrome patient community be doing better to get its needs satisfied?
I have found the patient communities to be thoroughly engaged and eager to learn more about the pathophysiology of CFS. Past history makes it hard for some patients and advocates to have hope for government support for their illness. “Hardliner” skeptics are eager to create conspiracy theories for everything.
However, many patients and I understand the value of scientific principles and debate. We saw science work with XMRV. Yet, while the debate was ongoing, theories of the government hiding data abounded as scientists worked on replicating experiments and getting the truth out about XMRV.
What patients might not realize is that researchers also need hope and encouragement to move forward. I encourage all of us to offer researchers a few kind words of support and to inspire them to keep working on the illness.
Besides more funding, what could the federal government be doing better to satisfy the needs of the ME/CFS community?
Resources for scientific discovery come in various forms. My colleagues on the Trans-NIH ME/CFS Research Working Group understand this very well. Although funding is always at the top of our list, we recognize other ways to support CFS research. This includes support for research conferences; increasing awareness of the illness in the government, the medical communities and general public; support for training and career development; and public-private ventures to leverage limited financial resources.
The reasons for the Institute of Medicine and NIH evaluation of case definitions still puzzle me
How important would having a federally recognized clinical or research definition be? Would that open doors that are now closed?
I think clinical and research definitions are extremely important for the future of the study and recognition of CFS. Having a diagnosis take months, and needing to exclude so many other diseases and conditions, stifles understanding of the etiology and pathogenesis of CFS. The current definitions could greatly be aided by a biomarker, and, with more research, these are gaining validation.
The reasons for the Institute of Medicine and NIH evaluation of case definitions still puzzle me. However, I do know that the government as a basis for larger initiatives sometimes uses such evaluation reports. I remain hopeful that the DHHS has such initiatives awaiting the outcome of these reports.