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Dr. Klimas Talks - on Her New ME/CFS Research Institute at NSU

Blog entry posted by Cort, Dec 20, 2011.

<img src="http://phoenixrising.me/wp-content/uploads/KlimasXMRV1.jpg" align="right" />
I can promise we will be providing cutting edge research and care, and educating providers like never before.

Dr. Nancy Klimas​


Dr. Klimas recently left the University of Miami to head up a new Institute dedicated to researching chronic fatigue syndrome (ME/CFS) and Gulf War Illness at Nova Southeastern University. Dr. Klimas worked at the Univ. of Miami for 27 years; they gave her a space and a platform for her ME/CFS research, and for that we must be grateful, but they were never an eager partner. Nova Southeastern University (NSU), however, sounds like its eager to make a difference in this field.



Dr. Klimas was known at the federal advisory panel for CFS (CFSAC) for her ability to see large opportunities and that hasnt changed. She pictures the Institute as a hub of collaboration and innovation and as a partner in a national/international clinical trials network. (The idea of a formal CFS Clinical Trials Network is in the air. When Kim McCleary (CAA) called for development of such a network at the last CFSAC meeting, she pointed out that several pieces of the infrastructure needed to build it were in fact developed during the governments response to XMRV.)

Dr. Klimas also held out the possibility of the specialist ME/CFS clinic at NSU expanding to the other NSU campuses across the country. Shell use a sophisticated electronic medical records system to track progress in patient groups.

How long have you been thinking about creating an Institute for the research and treatment of chronic fatigue syndrome and allied disorders?

I made a decision to look at other sites about 2 years ago. I was looking at several universities, but NSU appealed for a number of reasons. First they have a different way of doing business a less round peg in square hole type thinking. My major issue was silo thinking; research in one place, clinics in another, teaching as an add-on and everyone on a multi-disciplinary team answering to different chairs and different departments the traditional academic way of doing things. I wanted a single place where everyone worked together on the complex mission of research and education and clinical care. And I wanted to be the boss, no extra layers of division chiefs and department chairs.

NSU saw the potential to achieve so much more with this model. They are considering actually building the basic science lab right next to the clinic so that the entire team can work closely together! Imagine if the PhDs split a pizza with the clinicians: I saw a case today that really puzzled me. What do you think could allow someone to make an immune response to one virus, but not another before you know it you have a brainstorming session that connects the basic scientists to real people, real cases. Things really move along.

You had a clinic base at the Univ. of Miami and it was a good thing to have a clinic associated with a major University but Novas commitment to your work and the Institute for Neuroimmune Medicine is of an entirely different magnitude. Do you have a sense why Nova Southeastern University is committing so many resources to ME/CFS at this time? Might they view this as an emerging field that theyd like lead in?

I think so. I can promise we will be providing cutting edge research and care, and educating providers like never before. They are also familiar with the illness. I have met several staff members with the diagnosis, and members of the leadership team also have had friends with the illness or family members with the illness.

I think our work with Gulf War Illness is also striking a cord. We all want to do right by our veterans and armed forces personnel, and Gulf War Illness is every bit as miserable an experience as ME/CFS.

The Institute for Neuroimmune Medicine will be a significant hub for ME/CFS treatment in the southeastern United States. How many more patients will be seen at the clinic relative to your present practice and how will the experience be different for them?

Oh there are many steps in this particular dream. We start with a second clinic, more staffing, integrating education and research every step of the way. But NSU has many campuses nationally and internationally (look it up!) and if we are successful in these early steps, particularly with clinician training, we could grow.

Can you give a general dollar amount the University is committing to the Institute?

No, there is a major fundraising effort, but they are committed to endowing the Institute with a long range philanthropic campaign.

Nova Southeastern University (NSU) will be adding five new faculty positions to support the Institute for Neuroimmune Medicine. Are these research positions? Can you say what those will be and who, besides yourself and Dr. Rey, will be filling them?

Recruitment is underway so I shouldnt really be naming names. But 3 more research-focused individuals, but at least one senior person, and two to mentor and grow.

Will the Neuro-immune Institute have a specific research focus within CFS? Youre best known for your work on natural killer cells and now gene expression findings. Is this the kind of work the Neuro-immune Institute will pursue?

Well, we have certainly moved our focus to a systems biology approach, and it is bearing fruit. I submitted two protocols over the summer to test therapies that our computational models suggest as reasonable targets for intervention. (More on that if I am funded.) But, as you might imagine, we are multidisciplinary; there are many specialties, and many different potential approaches to ME/CFS.

I am very keen to work to develop a clinical trials group nationally/internationally using our assessment platform as a cost effective and efficient way to test intervention impact. I am also keen to use the EMR as a tool to track clinical interventions clinical practice and impactmore on that in the future as well.

At CFSAC and elsewhere youve been outspoken about the need to increase practitioner awareness and knowledge on CFS. At a recent CFSAC meeting you spoke of the hundreds of times that youve known of patients being referred to psychiatrists during a trip to the emergency room. Youve also spoken of the many instances where parents have been accused of Munchausens syndrome as they battle to take care of their children. One of the tasks the Institute of Neuro-Immune Medicine has taken on is to train practitioners. How will the Institute take this on?

<img src="http://phoenixrising.me/wp-content/uploads/160px-Westhallatnsu1.jpg" align="right" />Its early yet. The Dean of the College of Medicine, Anthony Silvagni, is clearly committed to the education message, as is Fred Lippman, Chancellor of Nova Southeastern Universitys Health Professions Division which includes all of the health sciences PA, ARNP, RN, Pharmacy etc. Initially we will have students of all sorts in our clinics, and I expect we will find our way into the curriculum in a number of ways, from classroom teaching, patient/doctor case demonstrations, etc. I am hoping to find faculty keen to jump on the research bandwagon as well, both in collaborations with established investigators and by mentoring young faculty in the various schools.

I dont think anybody has collaborated more vigorously than you in the CFS field. Youve worked with everyone from the CDC to Dr. Glazer to Dr. Broderick and Dr. Vernon, and have recently been collaborating with the PHANU group at Bond University in Australia. Youve also worked in HIV and Gulf War Illness. If anyone is well placed to collaborate and produce think tanks on CFS research issues you are. Do you have an idea of what subjects these think tanks will tackle? How important will it be to get outside researchers joining these think tanks?

I would encourage you and your readers to help us with these plans. We are a systems biology/multidisciplinary/integrative/ whole body kind of research group. So we would like to see people who can help put the whole picture together connecting neuro-imaging people with inflammation researchers, connecting genomics/proteomics with drug discovery and drug repurposing experts, pulling in experts from neurotoxicology into the field. We need outside investigators to make them into inside investigators!

Youve been a central figure in the CASA project to integrate databases of information on CFS and make them accessible to researchers. Do you expect the Institute for Neuroimmune Medicine to take part in those projects?

We are excited about using web based platforms to house assessment and biologic data. I have some very cool ideas on this, but this too is too soon to share. (But stay tuned.) CASA is coming along nicely, but not yet fully formed. We have launched, with CFIs sponsorship, the RedCap platform and a common set of instruments to look at many domains of illness (e.g., sleep, pain, fatigue, function) and are using this in the CFIDS Association sponsored Biobank study.

NSU through the Institute is happy to host this and other RedCap based assessment tools for investigators who need this support. We will also offer other data management/ stats core support for multicenter studies. Redcap is up and running thanks to an amazing IT team at NSU with some advice from the inventors at Vanderbilt. The rest will come along as we settle in.

The Klimas/Fletcher team at the Univ. of Miami is one of the most enduring in the CFS research field. Youve worked together for over 20 years on NK cell and immune dysfunction in CFS. Dr. Fletcher is based at the Univ of Miami. Will this move to Nova affect that partnership?

Nothing could hurt that partnership. Dr Fletcher is the unsung hero I was delighted that she received the research award at IACFS/ME Ottawa. She has worked on this non-stop, often 7 days a week and late at night for decades. I get all the credit for her hard work. She continues to co-direct my labs at the Miami VA Medical Center.

That PhD/MD partnership is a tremendously powerful thing, and working with an exacting scientist like Mary Ann Fletcher guarantees the quality of the data and a very strong scientific method. She will remain at University of Miami as the scientific director of the research program still based at UM. This includes the PNI research group with Mike Antoni, Barry Hurwitz and Neil Schneiderman, as well as the very strong genomics team at the Hussman Institute.

There are some good things happening. There is the NSUs commitment to the Institute for Neuroimmune Medicine, Dr. Montoyas Chronic Illness Initiative in Stanford, the Chronic Fatigue Initiative with its large budget, PHANU at Bond University in Australia has secured several major grants, the Lights basically have a FM and CFS research center at the University of Utah and theres the WPI at the University of Nevada at RenoThe meager federal response is still agonizing to behold but it seems that some ME/CFS researchers are finally getting support from their Universities. Youve been in this field a long time. Is ME/CFS becoming more of a topic that researchers feel presents an opportunity for them or have we just lucked out recently?

Persistence pays off? I think the advocacy community has done much to push for more, and have begun to find ways to fund bigger programs through private funds. Philanthropy has put more into this field than the federal government; thank goodness for generous souls. I also think the XMRV findings, as hard as that has been, put a human face on the illness for policy makers and researchers.

We have had some important and effective very good friends as we become more established as a field. Wanda Jones did a tremendous job behind the scenes, and HHS as an agency is far more pro-active than ever before. I am very pleased with the make up of the CFSAC, and the working group established within HHS to find funding through the various agencies. I wish I had 3 grant writers right now. I think there are ways to fund research, education, and clinical care that we have not yet touched.


Dr. Klimas had this to say about Phoenix Rising


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