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Great Start – Big Plans Ahead: Dr. Klimas at her NSU Coming Out Party

Dr. Klimas has big plans for her new Institute on Neuroimmune Research at NSU

Dr. Klimas has big plans for the new Institute on Neuroimmune Research at NSU

A Coming Out Party

The coming out party for Dr. Klimas Institute for Neuroimmune Research at Nova Southeastern University (NSU) on January 26th was a year in the making.   In 2011 NSU had made her an offer she couldn’t refuse -  the opportunity to break down what she called the  silo’s that separated researchers, clinicians and educators  – and in  Dec 2011 she announced, after decades or work at the University of Miami, she was leaving to  create a new Institute at NSU.

In the Institute’s first public event, a  Patient Conference,  she brought together members of the Institute to talk about it. After the Dean’s short introduction, Dr. Klimas  gave the first presentation.

The Big Plan : Finding Effective Therapies

 (Warning…I frequently take riff’s on  the presentations (see Waziry and EBV below) ; if something in these blogs turns out to be incorrect, it’s probably due to  my riff :) )

Dr. Klimas’  presentation was titled a BIG PLAN and it’s a plan  that is  focused towards one goal…”Finding Effective Therapies”. Dr. Klimas’ effort is fundamentally oriented towards finding effective therapies and we’ll see how that’s going to work in a later presentation.

The mission statement pointed out just what kind of disorder Dr. Klimas believes chronic fatigue syndrome is…a “neuro-inflammatory” disorder; a nervous system disorder involving inflammation; ie  immune activation.

Dr. Klimas emphasized that the reason she came to NSU was to create an integrated program that has the  clinicians, researchers and educators  all working together in a tightly knit group.  Each person, she said is  engaged in all of it; the doctors are talking with the researchers who are informing the educators.  In fact the way the building is structured they have to communicate; everyone eats and meets in the same central meeting/ conference room.

The Institute focuses on two groups, people with chronic fatigue syndrome and people with Gulf War Illness (GWI)

Gulf War Illness (GWI)

Introducing Gulf War Illness Dr. Klimas stated the  remarkable fact that fully 1/4 of the Gulf War Vets (that’s 200,000 people and some estimates are higher)  returned with a chronic, often disabling multisystem illness ….(sounds like ME/CFS?)…that looks like ME/CFS but is biologically very  different.  What happened? It appears that a  toxic cloud of elements from gas fires, pesticides, vaccines, uranium etc.  with the major contributor probably being something we’ve all been exposed to at times;  pesticides.

  • Dig Deeper: Check out a  recent fascinating New York Times article  suggesting that contaminated dust and  Sarin, a close cousin of organophosphate pesticides, were  key factors in GWI.

That toxic insult is probably long, long gone but that initial insult  appears to have reset many GW participants systems permanently and Dr. Klimas is trying to figure out how to reset  the reset button.

Chronic Fatigue Syndrome (ME/CFS)

Dr. Klimas’s test results suggest an insult is still present in ME/CFS. (More on that later). Calling it a terrible illness Dr. Klimas noted that 1/4 or more of people with ME/CFS are fully disabled and many more are partially disabled and that the disease with the funny name is as debilitating  as heart disease, end stage kidney disease, AIDS (AIDS !!!) and MS.

She laughed at one idea she  come across at times; that people with ME/CFS  want to be on disability and the poverty level income that provides them instead of having access to their income they enjoyed previously; yes, she laughed , what a great tradeoff that would be.

The People

Dr Waziry will focus on determining what pathogens are doing to the cells of people with chronic fatigue syndrome

Dr Waziry will focus on determining what pathogens are doing to the cells of people with chronic fatigue syndrome

Thus  far the Institute has on board researchers specializing in  gene expression (Nathanson),  viral effects (Waziry), clinical research (Dr. Klimas) and two computational biologists,  (Broderick and Cradock) and, I’ve been told, may be adding an animal modeler.

Pathogens

Waziry specializes in a key, key area – detecting how  viruses muck up how cells operate. If  viruses are present you, of course,  want to get at them but if the viruses are gone or are hard to find  then finding some sort of viral fingerprint could inform you how the damage occurred, where to target treatments and  what viruses to look for would be very helpful and that’s what Waziry is doing.

Given the common infectious trigger in this disorder  this slant makes  sense; something, after all, happened way back when and for many people it involved a pathogen.  If  Waziry finds a signature unique to cells that  Epstein Barr Virus mutilated, for instance,  you’d know your pathogen without having to resort to expensive and not always accurate blood tests.  It’s also possible, given the many  infectious triggers documented in ME/CFS (EBV, parvovirus, coxsackie, West Nile Virus, Giardia, etc.) that they’re all tweaking the system in the same way.  If that’s what’s happening then  finding a common immune signature will allow the team to develop simple diagnostic tests for a significant portion of ME/CFS patients.

Computational Biology

The computational biologists are trying to stop the illness cascade in its tracks in chronic fatigue syndrome

The computational biologists are trying to stop the illness cascade in its tracks in chronic fatigue syndrome

Dr. Klimas has fully  embraced a new branch of  biology called computational biology that uses sophisticated data mining techniques to analyze  how our internal  systems operate.  In fact Dr. Klimas has so fully embraced this type of research that her computational biologists are doing cutting edge work not being done in any other disease.

The computational biologists (Broderick and Crawford) play clean up. Every piece of  research and clinical data gathering ultimately ends up in their hands. They’re trying to do something unique in medicine;  using data mining techniques to target the molecular source of this disease in time.  Think of it as isolating the pebble the started the snow slide that ended creating an avalanche.  This isn’t about symptom amelioration anymore; this is about getting at the very beginnings of the system-wide ‘collapse’ that occurred and is still occurring  in people with ME/CFS.

The computational biologist are the ones, Dr. Klimas explained, that will ultimately be able to tell her that  tweaking this  patients HPA axis here, and prodding their  immune system over here and here,  should stop the cascade of system-wide dysfunction that  causes chronic fatigue syndrome…Essentially she wants to cut a relapse or flare  off at it’s …er…..start.

We’ll learn more about this approach in Broderick’s talk.

Speeding Up the Process

Dr. Klimas wants to move quickly. No more of this  waiting two years for the NIH to respond;  Dr. Klimas – through a process Dr. Broderick will outline later – hopes to produce multiple small-scale, phase-1 type clinical trials in house to get the  data needed to get pharmaceutical companies interested in drugs that will help ME/CFS patients.

The Institute

At this point the Neuro-immune Institute has  11 staff members including 6 researchers/research assistants, a research coordinator, a Director of Medical Education, two Nurse Practitioners (one of whom has ME/CFS) plus researchers from the University of Miami, University of Alberta, Wright State,  and the CDC . And they’re busy with no less than seven different active studies going on at the moment.

Accomplishments of the Past Year

Dr. Klimas announced two encouraging signs; (a)  they’d achieved more in the past year than expected and (b) Nova kicked in more than she expected.

In the first year the Institute for Neuroimmune Research has been involved in

Research

  • a really large DOD grant
  • Genomic studies
  • Gene expression and immune regulation study
  • Gene expression exercise study
  • GWI animal modeling
  • CDC – multisite ME/CFS physician study
  • Chronic Fatigue Initiative Pathogen Study – Dr. Klimas stated that the CFI, which  is the most well-endowed ME/CFS research foundation,  is motivated to come up with answers quickly as well, and that the pathogen samples in the big Lipkin/Hornig study are being analyzed now. She stated the Institute would  continue their work with CFI, suggesting that further studies are around the corner.
  • Epidemiological Study – stating this has never been done before, this study has tracked people back as far as  10 years and asked them how they’re doing now; thus far 1,000 people have answered the questionnaire. Smiling broadly she said they did it on student stipends; $8,000 (a site?) – a ridiculously low figure  – and they’re getting important, never before seen data.
  • Ampligen Study

Treatment

  • Doubled the clinical space at their  Kendall clinic
  • Created a  new clinic at Davie

An Effective Team – Dr. Klimas mentioned how effective she and  Mary Fletcher, whom, she said does not sleep and works weekends (we’ll see evidence of that later :) ), were at writing and getting NIH grants. That’s very true; while other ME/CFS researchers have given up on the NIH and few get grants, these two always seem to be in the mix at the NIH.   Their ability to consistently get grants for this  disorder is extraoardinary and is partially because of the interest in the cutting-edge computational biology approach they’ve taking.

Goals for this Year

Next Dr. Klimas went over their goals for this year.

We’re going to be able to collect huge mountains of data on normal care and make the evidence happen….Dr. Nancy Klimas

 Turn the Clinical Database into A Research Database (and then analyze the heck out of it)

The plan, is to integrate her clinical databases into her REDCAP  research database, providing her sophisticated  tools to analyze treatment effectiveness in her patients, past and present. If you’re part of her clinic (with your permission) you’ll become a research partner as well.

Integrating her clinical database into her research database could allow Dr. Klimas to answer many question about treatment effectiveness

Integrating her clinical database into her research database could allow Dr. Klimas to answer many question about treatment effectiveness

This is big stuff. By putting her patients into  a research database made for, well, research and analysis – Dr. Klimas is opening up thousands of records and patient outcomes to  analysis. Over time this will bring  treatment outcomes  out of the fog of individual guesswork and intuition into the clarity of statistically derived analysis.  No more waiting for for someone spend two years convincing the NIH to fund a small treatment trial….those trials have effectively been underway in ME/CFS specialists offices for decades; they’re just waiting to be uncovered.

Doxepin elixir is commonly used to aid sleep in chronic fatigue syndrome but how effective is it really? Are there certainly types of patients it works better in?   Would some patients do better with Ambien? Nobody really knows the answers to these questions but given the staff and funding  they are answerable with this technology.

If this really works, this work, and Dr. Kogelnik at the Open Medicine Institute has similar plans, would be a bonanza for both patients and doctors. Since the CDC doesn’t seem to be able to handle non evidence-based data, we could anticipate an entirely new CDC Toolkit, for example, coming out of  this work.  Dr. Klimas said they were  going to try and sell the project to Medicare.

The ability to do this kind of work is one of the dreams of the electronic digital revolution spreading across the medical field.  Only time will tell but hopefully it will deliver on its promise.

How did Dr. Klimas get this project up and running? She walked into an NSU office…and asked them “Do you think we could????” and it was borne. That’s the difference between working in a pro-active environment that is eager for you to succeed and in an institution (my words, not hers) that tolerates your existence but isn’t going to go out of its way to support you.

Other Goals

  • Establish a Translational Research Program
  • Begin the DOD modeling studies (see later presentation)
  • Establish a Nanostring (Gene Expression)  Laboratory
  • Integrate DOD and NIH programs at the new lab
  • Apply to NIH for Program Project Funds to Pull Everything Together
  • Train Young  Researchers

Five Year Goals

  • Be a self sustaining unit without the need for extra University funding
  • Develop funded training program for young faculty
  • Creating an endowment that supports the program
  • Broaden international collaborations
Dr. Klimas goal is to create a environment that fosters communication and innovation

Dr. Klimas goal is to create a environment that fosters communication and innovation

Conclusion

Dr. Klimas is getting good support, the Institute is growing rapidly, it’s involved in many studies and it’s got big plans. 2012 was a good first year for the Institute for Neuroimmune Research.

Next up: Dr. Hornig on Autoimmunity and ME/CFS

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11 Comments

  • Pat

    February 22, 2013 at 4:41 pm - Reply

    Great introduction Cort. We, in the Miami ME/CFS Support & Advocacy Group, are so excited to see these developments finally take root for Dr. Klimas and all ME/CFS patients. There are definitely many good reasons to be hopeful at this time. We all needed this boost and there is no one better to lead the charge than Dr. Klimas. She is the most caring, dedicated physician I’ve ever known and it is a real privilege to be a participant in her research.

    • Cort Johnson

      February 22, 2013 at 5:07 pm - Reply

      I agree Pat. I was encouraged and surprised by how much movement the new Institute had made. This is the difference between an Institute that is supported by a University and an Institute struggling to get funding. Dr. Klimas is clearly getting support and that has allowed her to grow the Institute more quickly and I had imagined. I don’t have any pictures of the building the Institute is in but the space amounted to it is impressive. (Dr. Peterson said, as he walked around it with a smile on his face, “Its bigger than I thought’”. With 20 or so examining, lab and research rooms and with a central meeting room, it was a nice facility…and they will move in about two years to a new building..A nice start indeed!

  • Kathy

    February 22, 2013 at 6:34 pm - Reply

    It is breathtaking to see all of these resources dedicated to CFS, when I became ill with it 32 years ago there was next to nothing being done and the first copies I obtained of any type of CFS information was on mimeographed paper! Anyone else old enough to remember mimeographs? lol

    In all of what we’ve been seeing in the way of research I feel one of the most important is that investigating neural ‘gating’, is that something that will be highlighted at this Institute?

    • Cort Johnson

      February 22, 2013 at 6:40 pm - Reply

      I remember mimeographs….it feels like it was the stone age :) . It is a neuro-immune Institute but I don’t know if they’re specifically looking at that. Broderick’s work, on the other hand, is so encompassing with all the data he collects that factors effecting neural gating could very well show up. Fletcher and Klimas did uncover an ANS/Immune factor, who’s name escapes me now. If the ANS is involved in the filtering problems some researchers think are there then its possible it may show up on that end. Dr. Klimas is certainly very interested in the autonomic nervous system.

  • Rich Carson

    February 23, 2013 at 2:11 am - Reply

    Great article Cort. Nobody understands the ME world better than you, and your ability to share it in an understandable way is terrific. Thanks for the good work. Rich Carson

    • Cort Johnson

      February 23, 2013 at 2:25 am - Reply

      Thanks Rich…Nancy certainly made it easy. She’s so good at talking in a very understandable manner at just about anything ME/CFS’ey.. I love just watching the wheels turn as she talks. She’s such an asset to us..

  • Marg

    February 23, 2013 at 2:38 am - Reply

    Thanks Cort. We are so fortunate to have Dr. Klimas and company working so hard for us. She is a sweetheart no doubt about that..

    • Cort Johnson

      February 23, 2013 at 3:20 am - Reply

      She’s doing what she always wanted to do; build a team in a collaborative environment. When I talked with Gordon Broderick he said what a mentor she was and how good she was working in a team environment. I hope she can continue to have success at NSU and grow the Institute. Whatever happened at NSU to decide to take her and ME/CFS and GWS on – it seems to be working. :)

  • John

    February 23, 2013 at 11:18 am - Reply

    Thanks Cort for all this info, I don’t know how you do it not being well yourself. It gives me some hope for the future even though I live over the pond in the UK. We use magic over here just talk and exercise and you will improve.(LOL)

  • Laurel McDonough

    February 24, 2013 at 1:11 pm - Reply

    when I click on the 3 links to videos above I get the same video discussion about the institute. Am I doing something wrong?

  • Diana S.

    February 26, 2013 at 10:57 pm - Reply

    I have clicked on the link to the Klimas presentation multiple times and each time I get 1 minute 10 seconds and then it ends. Do you have an updated link? Thanks.

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