Klimas Conference Videos 1 and 2: INIM’s Big Plan

by Jody Smith

A Patient Conference for Dr. Nancy Klimas was hosted by Nova Southeastern University on January 26, 2013. I was delighted to see Vonnie Kennedy’s article A Celebration of Hope and Progress with her first-hand view of the morning sessions. Vonnie did not have the advantage I’ve had of being able to see the videos from the conference, and being able to play sections back over and over again. But she did have the pleasure of being at NSU and seeing these dedicated professionals at the conference.

Introducing the INIM

The first video from the conference, entitled Welcome and Introducing the INIM (Institute of Neuro Immune Medicine), is only about five minutes long. It set a warm tone for the rest of the meeting though, as Dr. Nancy Klimas welcomed the visitors and introduced Dr. Anthony Silvagni, dean of the College of Medicine at NSU.

Dr. Klimas said that Dr. Silvagni is the reason she is presently at NSU. Working with him and others at NSU makes her feel empowered, and Dr. Klimas said with a smile that she is stretching out the honeymoon period as long as she can. Dr. Silvagni’s response to these words was that it’s “easy to empower someone who is doing a fantastic job.” He spoke highly of the staff at NSU.

INIM’s Big Plan

The second video, entitled INIM’s Big Plan: Finding Effective Therapy for GWI, CFS/ME and Complex Medical Illnesses, began with Dr. Klimas welcoming the audience, making them feel at home. She apologized for the size of the room, explaining that this was also a major research day for the Health Science Division, so the 500 seat auditorium she’d hoped for just wasn’t available. She jokingly said that she’d wished stretchers could have been made available for the sick people in the audience, making it clear that she understands the challenges that people with CFS/ME and Gulf War Illness face.

Dr. Klimas would have liked to have rooms for people to rest in, but couldn’t due to classes going on. She referred though to the couches in the hallway in case any of the audience had need of them. She encouraged the crowd to “feel free to pull a chair up and put your feet up and bother the guy in front of you by putting your feet in the middle of their back, or whatever you have to do to keep your blood pressure in your brain and not in your feet.”

INIM’s Mission

Dr. Klimas moved on to the business of the day, and expanded on the mission statement she had onscreen:

Mission:

To advance knowledge and care for people with complex neuro-inflammatory illnesses through research, clinical care and education

She said that she’d like to put “cure” in the mission statement, that they’d like to find the cure. But “the most realistic thing might be to hope to find a chronic management system that makes you work at full capacity.”

The next screen displayed the NSU COM INIM Mission:

An integrated program, which will not separate the clinical, research, and education missions
NSU investigators/clinicians/educators working through an international platform for collaboration with a wider network of institute fellows

Dr. Klimas said that she left one university to go to another for the opportunity “to integrate completely care with research with education”. Often there’s a research silo, a clinical silo, an education silo, “but if you can’t put that all in one program, this won’t work”.

At NSU, these silos are not separated. “The laboratory scientists, the computational biologists, the clinical scientist, the clinicians, are all working in the same space, sharing the same conference room, and my scientists have to walk through the waiting room to get there. They’re going to see sick people coming in and going out. And I’m telling you, that gives you the drive to stay focused and push.”

Calling herself “a very practical soul,” she said simply, “We’re focused on this mission. You. Get you better.”

NSU is trying to draw from strengths of other CFS/ME and GWI organizations, not just from the United States, but from around the world. “We pull the plums of fine science anywhere we can find it.” The goal has been to not just draw people in but to draw in the best of the best.

She moved on with the next screen to focus on Gulf War Illness, which is clinically similar to CFS/ME. The two conditions however, have very different causes.

Gulf War Illness

25% of veterans returned from the first Gulf War with a chronic often disabling multisystem illness.

According to Dr. Klimas, if you have CFS/ME you’ll know how GWI feels. “You cannot clinically tell them apart,” she said, but “biologically they’re incredibly different.” GWI is probably due to “toxic insults, probably neurotoxic insults, and with many different flavors but the most important is very likely pesticides.”

While it helps to know what happened before, the practical goal is discovering “how to make you better.” The focus at NSU is discovering the “mediators of persistence. Why does it keep on going?”

“What’s going on right now, and what can we do about that?”

Dr. Klimas went on to the next screen which detailed some statistics about CFS/ME.

Chronic Fatigue Syndrome/ME

800,000 to 2.5 million Americans are affected with ME/CFS
Five times more common in women
Long-lasting, debilitating illness (as severe as heart disease, end stage renal disease, MS, AIDS)
25% unemployed or receiving disability due to illness

She brought home the profound human suffering, looking beyond the impersonal numbers. “Pain and fatigue, fatigue and pain. Cognitive dysfunction, a lot of autonomic dysfunction which means your blood pressure and your pulse and everything going haywire.”

And, practical soul that she is, she ties in the difficulties for the chronically ill in attending a conference like this, and how she and her colleagues have tried to ease the difficulties where they could. “[It’s] hard to sit upright like this and think you’re perfusing your brain because you’ve got low blood flow in your brain. It’s hard to think really well when your blood isn’t flowing well in your brain … Too bad we couldn’t find an auditorium with recliners.”

INIM’s Structure and Staff

Dr. Klimas’ next screen described the Institute structure and the people who make it work. Heading up the Executive Committee is Dr. Silvagni, with Dr. Klimas as Director. Branching off from there she outlined those responsible for Clinical Operations, Laboratory Research, Clinical Research, Computational Biology, Collaborative Network, and the Fundraising Committee. Dr. Klimas is also chairperson for the Scientific Advisory Board. Under her is the Community Advisory Committee.

The next screens listed experts involved in NSU/COM’s partnership with the Miami VA Medical Center in the Gulf War Illness research program, in tandem with NSU’s clinic for patients with GWI, CFS/ME and other neuroimmune disorders.

Dr. Klimas seemed to enjoy putting up a slideshow of smiling colleagues with Dr. Klimas and professionals in action with patients, which she called “The gang, the leadership here” – researchers, exercise therapists and teachers.

Suddenly Dr. Klimas was interrupted by a loud announcement: “Welcome to Polycom Conference Recorder Playback Service”, which prompted surprised laughter in the room.

“Did you hear that?” she asked. “Oh dear.” More laughter

Institute Mission

The next screen displayed the Institute Mission – NSU Institute for Neuro-Immune Medicine:

Clinical Care: Caring for patients with complex medical condition
Immune based disorders; integrate education
Initial focus on CFS/ME and Gulf War Illness

Outpatient Facility in Kendall
A second opening on the Davie campus
Collaborative program with Miami VAMC

2013 Goals

Develop staff and faculty at the two facilities
Integrate a research platform in the electronic medical record to allow integration of clinical care/research mission to be fully realized

INIM’s Research Program

Clinical Research

Dr. Klimas moved on to the next screen on Clinical Research:

Integrating outcome research with the medical records
Biobank/biomarker discovery projects and clinical intervention research

Currently funded projects:

Chronic Fatigue Initiative (CFI) sponsored pathogen discovery project
CFI sponsored retrospective outcomes analysis “lookback” project
CDC sponsored CFS/ME clinical subgroups study
NIH sponsored XMRV study (complete)
Ampligen an open label clinical trial in CFS/ME

Next came the Clinical Research 2013 Plan:

Establish Translational Research Unit with philanthropic funding
Initiate Department of Defense funded modeling studies in GWI

Laboratory Research

Dr. Klimas moved on to Laboratory Research:

Pathogenesis
Pathogen Discovery
Biomarker Projects

Currently funded projects:

NIH and DOD funded genomics project (VA partner)
- Changes in gene expression with a dynamic challenge
- Gene expression and regulation in CFS/ME and GWI
NSU Pathogen discovery project in collaboration with Columbia, Harvard, CFS/ME clinical investigators network (CFI sponsored)
DoD funded GWI animal to human modeling studies

2013 Plans

Establish nonostring laboratory at NSU
Integrate DoD and NIH programs at the new lab location
Apply to NIH for Program Project funds to integrate the genomics, computational modeling and translational research units
Assist young investigators applications for R21 and R01 funding

Computational Research

The next screen was for Computational Research:

Modeling illness, pathogenesis and interventions using novel computational models

The screen on Research Staff listed Research Director Elizabeth Balbin, and her research staff.

Current Research Studies

Then it was on to Current Research Studies:

Multi-site Clinical Assessment of Chronic Fatigue Syndrome (CFS).
- National Center for Emerging and Zoanotic Infectious Diseases
- Centers for Disease Control and Prevention Atlanta, GA.
Natural History of Chronic Fatigue and Related Illnesses
EPI Study – Trajectory of Illness in Chronic Fatigue Syndrome (CFS)
A Clinical and Biosample Database to Enable Discovery of Pathogens and Pathogenic Mechanisms in Chronic Fatigue Syndrome

NSU’s 5 Year Goals

NSU’s 5 Year Goals were displayed onscreen.

Establish self sustaining institute through:

Critical mass of NSU based faculty engaged in research, clinical care and education
Develop funded training programs for young faculty and trainee
Endowment that supports infrastructure and research/clinical growth plans
Extend institute membership to established international researcher/clinicians as fellows of the institute

The presentation concluded with more information on the Institute’s Mission.

An integrated program, which will not separate the clinical, research, and education missions
NSU investigators/clinicians, educators working through an international platform for collaboration with a wider network of institute fellows

“The Theme Is Hope”

Dr. Klimas brought the session of the second video to a close by saying that “the theme, the whole concept of the conference is hope.” She said that particularly after the disappointment following research into XMRV, she and all of the team at NSU want to bring hope to people with CFS/ME and GWI.

Dr. Klimas reassured the audience that videos from the conference are posted on the Nova website https://www.nova.edu/nim/past-events.html/. She said that Dan Moricoli was also recording sessions for the ME-CFS Knowledge Center https://www.cfsknowledgecenter.com/

“If you wear out and have to go home early you’re already forgiven, don’t worry.” And on that note, as always, Dr. Klimas again shows her understanding of our limitations, and does what she can to meet our special needs.