NSU’s opportunity to combine chronic fatigue syndrome and Gulf War Illness research, treatment and education efforts under one roof was too good to pass up…
Dr. Klimas’ New Opportunity
Stating that she was offered ‘an opportunity of a lifetime’, Dr. Klimas announced she was moving to Nova Southeastern to create an Institute for Neuro-Immune Medicine in December of last year. NSU had made her an offer – a commitment to build a framework for success that integrating research, treatment and education – she couldn’t refuse.
Recently I asked her how, after a year, it was going and she said she was ‘thrilled’ at Nova’s commitment to her work stating
“Who knew that the support of the institution could make such a great difference! No regrets for my move, I am very happy with the transition.”
She’s recruiting a senior clinical scientist to fill a donor endowed fellowship, is wooing a systems biologist and is looking an animal modeler’s way. (Animal modeling plays a integral role in much disease research; having an animal for ME/CFS would enable research to progress much more quickly.
With no less 13 studies on her projects board (four of them fully enrolled and underway) Dr. Klimas, as usual, is busy and engaged. Somehow both of the DOD Gulf War illness consortium grants Dr. Klimas helped to develop were funded and she is working out an agreement to get that work shifted to the Nova Southeastern sites.
Dr. Klimas, of course, partnered with the Chronic Fatigue Illness Initiative on their big pathogen study. She reported that patient recruitment is done and they’re concentrating on analyzing their samples with that state of art technology. Talk about a consequential study.
Her Miami clinic has doubled in size and a new clinic is opening up in Fort Lauderdale this month.
Now she’s celebrating a year of organization, work and accomplishment with a kickoff event sponsored by Nova Southeastern on the 26th.
Dr. Klimas’s Coming Out Party is January 26th…
CFS/ME and Gulf War Illness: A Celebration of Hope and Progress
Titled CFS/ME and Gulf War Illness 2013 – A Celebration of Hope and Progress, Dr. Klimas’s first public conference will place on Jan 26th in Fort Lauderdale, Fl. It’s got a hot lineup featuring Dr. Peterson, Dr. Broderick, Dr. Mady Hornig and Scott Carlson of the Chronic Fatigue Initiative (CFI), Dr. Levine and some military brass (Gulf War Illness) . Expect to hear some interesting news to come out of the day..
Let’s check out who’s speaking and on what in nice, warm Southern Florida (it could be in the 80’s :)) on the 26th
Mady Hornig, MD – ‘The Role of Pathogens in Autoimmunity and Chronic Illness’
The lead researcher in the Chronic Fatigue Initiatives big pathogen study will speak on ‘The Role of Pathogens in Autoimmunity and Chronic Illness’. Dr. Hornig topic – autoimmunity – is intriguing given that only one of her 50 plus studies have been on autoimmune issues, which of course, makes one wonder if we’ll be hearing some insights into that aspect of ME/CFS.
Dr Hornig has done research in another very complex disorder, autism, and her bornavirus research indicated that virus did not play a role in schizophrenia and major depression – as had been conjectured. She’s also, interestingly enough, done research on the same toll-like receptor Ampligen effects.
Given her work on the CFI’s pathogen study it’ll be interesting indeed to hear her speak on the ties between pathogen and chronic illnesses.
Connie Sole had her own brush with ME/CFS years. Now she’s an exercise physiologist working with Dr. Klimas
Connie Sol MS – ‘Reconditioning Safely’
Dr. Klimas’ exercise physiologist will speak on ‘reconditioning safely’. Measuring aerobic capacity has played a major role in Dr. Klimas clinical practice and in her research efforts. Dr. Unger of the CDC recently visited Dr. Klimas’s clinic to learned about the role exercise physiology plays in her work and was reportedly impressed. Check out an open discussion Dr. Klimas and Connie Sol will have with the CDC on the January 14th from 3-4pm EST. Call this number 800-619-4306 and use this Participant Code: 6023819 to listen in.
Gordon Broderick, PhD – ‘Modeling Complex Illness for Treatment Targets
A frequent research collaborator of Dr. Klimas’s, Dr. Broderick will speak on ‘Modeling Complex Illness for Treatment Targets’. Dr. Broderick uses large databases involving multiple systems of the body and complex calculations to flush out results. His cutting-edge techniques aren’t entirely understood or accepted by everyone but his talk suggests he’s beginning to hone in on very specific treatment targets. High levels of molecules or compounds, for instance, building up in up our systems could conceivably adjusted downward with drugs. Hopefully we’ll hear more about the specific targets and possibly future treatment options in his talk.
Dr. Peterson’s talk on ‘the Latest Interventions on Trials’ suggests we’ll be hearing something ne on the treatment end.
Dan Peterson, MD – Latest Interventions in Trial
Besides his extensive ME/CFS clinical background dating back over 25 years, Dr. Peterson has recently worked on research studies with the Chronic Fatigue Initiative, Dr. Jay Levy, Dr. Ian Lipkin, the PHANU group in Australia and with the Open Medicine Institute. Dr. Peterson created the Simmaron Foundation to support research into ME/CFS and related neuro-immune conditions in late 2010.
A good part of this conference will be about going from ‘the bench to the bedside’; ie from translating research findings and insights into new treatment options and that’s what Dr. Peterson appears to be talking about in his Dr. Latest Interventions in Trial’ talk. As that work starts to unfold its truly worth a celebration.
Delores Perdoma, PhD
Will speak on Chronic Illness and Marriage.
Voices of Recovery and Hope Panel Discussion
A Panel discussion called Voices of Recovery and Hope will involve a panel of CFS/ME and GWI patients discussing ways they’ve improved.
That’s a big lineup for one day and there’s a reception afterwards…Tickets are $25, and, of course, go to support the Institutes work. Dan Moricoli of the CFS Knowledge Center will be videotaping the proceedings for further dissemination.
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Just in…the Complete Agenda
9:00 registration, coffee/tea, set up sponsor and advocacy tables
9:30 Welcome and Introducing the INIM Anthony Silvagni, DO PharmD, Dean NSU College of Osteopathic Medicine
9:45 INIM’s Big Plan: finding Effective Therapy for GWI , CFS/ME and Complex Medical Illnesses Nancy Klimas, Director INIM , Chair Clinical Immunology and Professor of Medicine, NSU COM
10:15 Voices of Hope: Patients with GWI, CFS/ME with stories of recovery
10:45 break
Current Strategies in Treatment
11:00 The basics: treating CFS/ME and GWI Irma, Rey, MD, Director of Medical Education INIM , COM, NSU
11:30 Understanding your limits, a key to restoring fitness Connie Sol, MA Exercise Physiologist, INIM COM, NSU
12:00 The Important Role Family and partners Play in Coping with Chronic illness Delores Perdomo, PhD , LCSW University of Miami
12:30 lunch – seating in interest groups (e.g.: teens, men with CFS/ME, spouses, etc)
Models that Lead to Treatment
1:30 Introducing the new GWI Consortium Gordon Broderick, Mary Ann Fletcher:
2:00 Infection, Autoimmunity and Illness Mady Hornig, MD Columbia University, Principle Investigator, Pathogen Discovery Project, sponsored by the Chronic Fatigue Initiative.
2:30 New Understandings, New Treatments Dan Peterson, MD
3:00 break
3:15 Leading Yourself to a Healthier YOU! Lynn Lafferty, Pharm D, Director COM Alternative Medicine Program, and Rebecca Halstead, fmr Brigadier General , US Army
3:45 Panel Discussion: Is the Future Bright? The Direction of Research and Care Sue Levine, MD, Director Levine Clinic, NYC, Chair ( All Speakers)
4:30 Closing Remarks Kathy Assaf, Chair INIM Development Committee,
5:00 Tour and refreshments, NSU COM Institute for Neuro Immune Medicine
Quite a dedicated team now Cort – and a cause of much celebration. Very best wishes to them too.
Thanks Enid…From what I hear on the grapevine there may be some exciting news to come out of this…You never know but stay tuned! (I’ve heard interesting rumors of ‘biomarkers’ recently…who knows?)
Luckily you stay at the cutting edge and can see the “big picture” too by fitting the bits of the puzzle together as research moves on. But then you always have and that to my mind is precisely what is needed.
Thanks Enid..Trying my best…that’s where the juice is for me 🙂
Very, very exciting!!! Thanks for the great write-up, Cort!!!
Thanks…I have faith this is going to be a great day 🙂
Cort, sounds great–will you be writing a report on this site? Best wishes and thanks for your coverage again. Chris
Yes, its quite an assemblage of people at the meeting and I’m not that far away…Thanks
This is all exciting news. I see Dr Rey in Dr Klimas’ clinic and was part of her ‘good day bad day’ study (four visits over two years) when she was in Miami. That one, if I’m correct, was focused on biomarkers and subtypes of this illness. Don’t quote me but I image I’m close. I’m looking forward to all of the news that comes out of this conference.
Great to hear Pris…I have some remembrance, hopefully correct, that they were able to expand that study…I think its going to be interesting:)
NEVER a cause for celebration if in order to save ourselves, we want to torture some non-human animal who does not get CFS/ME.
This is like the AIDS nightmare all over again. When so many gay men in San Francisco were clamoring to be in a research program; they died while the government attempted to give chimps the AIDS virus. Chimps don’t get the AIDS virus.
If they are enough like us to suffer; we cannot morally use non-humans. If they are not enough like us; it is a waste to use them.
I have been in CFS research and would love to be again. What about the thousands or more of humans clamoring to donate themselves?
SHAMEFUL. I though our community understood how it was to be the underdog, to be used, to be pushed aside, to have no say over their lives. Now we aim to do the same to an innocent being? Haven’t we all suffered enough to never want to make another suffer?
Agreed.
Where does it reference doing studies on animals?
They mentioned animal models, did they say there were live ? I was wondering if there were 3d models or other methods that would be used?
Thanks for this, Cort – very much looking forward to your report from the event!
Any chance you’ll be able to make it to the London conference this year? It seems to be getting better every year. (No conference agenda out yet, but I’m very hopeful there will be many interesting speakers.) Would LOVE to hear your reports from that.
http://www.investinme.org/IiME%20Conference%202013/IiMEC8%20Home.htm
I agree it does seem to be getting better every year; they’ve had a great lineup the last couple of years. I’d love to visit London..I hear it is very pricey though….hopefully one of these days or years…
There could not be a better time. I have a very aged friend who has had a mild/moderate stroke after having every war related pathogen, or cold war malaise, since WWII. In the state of Florida. His daughter, my friend, has the same Prostate Cancer her mother died of. He has also survived prostate Cancer. He can’t die now.
Thank you Cort for keeping us so up to date with what is happening. I look forward to reading about this get together.
On another note do you have any experience or insights with Sarah Myhill’s protocols? Not sure if this is appropriate here or not but I am curious.
So glad you are out on your own, I hope you are enjoying the freedom.
Margo
Thanks Margo, I’m afraid I don’t have any experience about her protocols but I do some good things about them from time to time…Wish I could help more…
Thanks Cort for the report. I received an inviation but it is a time I cannot go. I will be waiting to see Dan’s videos and hear your report.
Dr. Klimas has brought me a long way! She is a keeper that is for sure.
Glad to hear that Dr. Klimas was so helpful 🙂
Wonder what list one had to be on to get a personal invitation?
This is godd news for those wanting answers. I like to see people coming together to help people. If you are so inclined, and will be in the Tampa area, please visit the 2013 Physician’s Round Table conference, January 23-27, Embassy Suites Tampa USF. Tickets are complimentary. Speakers include Dr. Ritchie Shoemaker, Dr. Omar Amin, Dr. Judy Mikovits, Dr. Dennis Hooper, Dr. Rick Sponaugle, Dr. Rachel Fresco, Dr. Ann Corson, Dr. Lee Cowden, Dr. Arup Chakraborty, Dr. Lewis Gross, Dr. Sabra Bellovin, Dr. Marlene Kunold, Dr. Karen Krogfelt, Dr. Steven Bock, and more! And, there will be over 40 exhibitors — product, services, and therapies.
This is a not-for-profit conference held each year.
This sounds like a stellar lineup. I *so* wish that CFS conferences were available online, given that our level of disability precludes attendance for most of us. Thank you for letting us know about it.
Its a great lineup….Thankfully Dan Moricoli is videotapping it so it will get out unfortunately not live as we would all wish…but it will get out and knowing Dan it will be very well done…I’ll be tweeting and reporting in the meantime, trying to get the main points out…
Someday I’ll bet all these conferences will be webcast live.
I am planning on attending this event. I don’t know who is all going, but I would like to connect with others . I deal mostly with very ill ppl in the UK, but am planning to start a group here in the US. I would prefer to be part of an organization with at least one cofounder. I would be very interested in speaking with you if you have the time.
Thank you, Cort, for this blog entry on the conference. And thank you especially for the info on the conference call that took place on Monday the 14th, between Dr. Klimas, Connie Sol, and Elizabeth Unger, of the CDC. Thanks to you, I was able to listen in, and I am very interested in the topic, being both a physical therapist who worked (before my ultimate complete collapse after over 20yrs w/ untreated ME/CFS) with people with severely debilitating multiple medical conditions, and a patient who has been rehabilitating myself back from a time of house-bound, occasionally bed-bound, hell, making the crawl back to an average Bested FCS level 5, with numerous set-backs.
Thanks Kim,
I found the talk very interesting; particularly the part about the autonomic nervous system triggering the immune cascades. I’ll have a blog on it coming up..Good luck with your continuing rehabilitation.
meant to say, that time of being so ill, bed- to house bound, began “almost 3 yrs ago, after pushing too hard for over 20 yrs”
A cautionary tale for us all..Thanks for reminding me not to push too hard…
Sounds like things didn’t go so well. The survey that successfully compared CFIDS to GWSI happened well after the First Gulf War. So everybody who resembled the GWI/Sports medicine model, in many cases, was not included they were out of treatment by then.
It was Hepatitis A that brought me down again in 1986. I never heard anything about exercise intolerance until after the flood of patients in the early and mid-eighties. I had it, but I believed that maximum daily exercise protected me and would surely restore me. I think it is good to teach patients who are new to the disease energy conservation. I think the way the conference call went projected traumas, dehumanization doled out with considerable past and present stigma, lost champions and their selfless hard work, now misunderstood or disregarded, and the threat to Ampligen which was a trauma in and of itself, though some kind of settlement may have been reached.
For those of us who have been ill for many years, the threat of paralysis from overuse is chilling and only early patients or the recovering 10% will likely come to benefit from your exercise bike.
Some of us have been tortured and the Bush era atrocities, the betrayal of the Constitution, the lack of National security and mutual trust has degenerated into a food chain with the common man and woman left as bottom feeders.
Stigmatized patients suffer a loss of health due to the blighting ignorance promoted, as it has come to seem, by a new wave of chaos and confusion.
The past speaks louder than any present. Even rich kid- patients’ social and family networks will not survive the destruction of false hope, ephemeral and built on sand. Erroneous optimism is supposed falsely to keep parents, siblings, spouses in the game. These may well prove to have an opposite effect. A fine sociology professor said in the mid seventies, named such families almost impossible to reunite whether they were given false hope or unnecessary pessimism.
False prognosises have left a massive army who, having lost dreams, beauty, reciprocal bonds, have built new lives. Unless you chose your words very carefully, more support will be eroded, as our reconstructed networks fail.
The most cruel and unusual treatment is meted out to those who have done nothing justly punishable. Those aligned with rheumatology may see patients with neurological, endocrine, circulatory and hematological disease components simply need to get out of their offices, whatever follows. Dejavu?
Those of us who were unable to access the Conference call need to know what exactly was said. We need to understand one another.
Can someone tell me the name of the auditorium the conference is being held at. I need to goggle directions
DiCanso
I am newly diagnosed with CFS…been sick for a long time. Can someone please let me know how to become a patient of Dr. Klimas? Is there a long wait?
Thank you!