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Simmaron Research Mobilizes Unique Assets to Push ME/CFS Field Forward: A Look Back at the First Year

April 4, 2013

We envision a world where ME/CFS is treatable and well-understood. To get there, we are scientifically redefining ME/CFS.

Simmaron focuses on chronic fatigue syndrome research

Simmaron has moved quickly in the past year and half and is involved in a variety of potentially groundbreaking studies.

The latest addition to the ME/CFS Research Foundation scene, the Simmaron Research Foundation started off small. There were no huge endowments, no connections to major academic centers; in fact, Simmaron was located in little Incline Village off of Lake Tahoe, a locale rich in chronic fatigue syndrome (ME/CFS) history but definitely not known for its medical resources.

What Simmaron did have was Dr. Daniel Peterson, a practitioner whose deep experience and extensive biobank is unparalleled in ME/CFS. Since the early days of the Incline outbreak in the early 1980’s Dr. Peterson has been immersed in chronic fatigue syndrome.  Now with the Simmaron Foundation’s support he had the opportunity to put his experience and samples to the test. It turned out that the ME/CFS research community was very interested in what he had to offer.

After just a year and a half, the Simmaron Foundation is making its mark.With studies underway that will help to redefine ME/CFS and how it gets researched and treated, Simmaron has quickly become perched on the front lines of ME/CFS research.

A Vital Resource – Finally Hitting Stride

Dr. Peterson quickly knew something had gone very wrong with the sick patients crowding his  door in Incline Village in the 1980’s, and early on  he began collecting samples for the studies he felt had to come.  It took decades but that time has come, and given the technology and the quality of the researchers  he and Simmaron Foundation are working with now, it was probably worth the wait.

Chronic Fatigue Initiative Pathogen Study

Simmaron Research provided 40  patient and 40 control samples to the biggest, most  rigorous and comprehensive ME/CFS pathogen study ever –  the Chronic Fatigue Initiative’s Pathogen Discovery project. Lead by Dr. Mady Hornig and Dr. Ian Lipkin, this project will set the stage for pathogen research in this disorder for years to come.

Simmaron’s eighty samples will join samples from four other ME/CFS clinics in a search that will:

  1. screen for 18 viruses, bacteria or protozoa  already associated with ME/CFS. If that hunt proves unsuccessful they will
  2. sequence everything in the blood to look for known and unknown viruses
  3. then develop tests for any new pathogens they find as well as
  4. look for unique protein signatures and
  5. analyze 50 markers of immune activation/inflammation/oxidative stress

The well-characterized, rigorously documented samples Simmaron is providing will play a key role in this study.  Of all the clinics in this project, Dr. Peterson’s stands out in its focus on immunologically challenged patients.  If the Lipkin/Hornig team finds pathogens, they will likely show up in the Simmaron samples.

The results from these studies are coming in and  by the end of this year we’ll finally have some answers to one of the biggest questions facing ME/CFS researchers and patients for over twenty years – what role pathogens play in this disorder.

ME/CFS Cerebral Spinal Fluid Samples – Meet Top Pathogen Experts in the World

The large pathogen discovery study funded by the Chronic Fatigue Initiative will dramatically increase our knowledge of the role pathogens play in ME/CFS but, for all the tissues it was studying (tears, saliva, blood and fecal samples), it was missing an important one – perhaps the major one – until Simmaron stepped in.

Cerebral spinal fluid circulates around the brain stem and the outside margin of the brain. When it’s collected, down near the tailbone, it bears traces of its path through the brain. If pathogens, unusual proteins or inflammatory markers are present in the brains, as so many believe,  the CSF is the best way, short of an autopsy or biopsy, to find them. CSF fluid analysis is used to assist with diagnosis in a number of neurological disorders.

Watch Cerebral Spinal Fluid Circulate Around the Brain

The Director of the HHV6 Foundation, Kristin Loomis, considers the Simmaron spinal fluid samples critical to the CFI project’s success because many of the viruses suspected in chronic fatigue syndrome simply don’t show up in the blood, the saliva, etc.  She noted that several theories suggest the pathogens present (HHV6, EBV, enteroviruses) have assumed unusual forms that make them difficult to trace in the blood.

It wasn’t just the size of Simmaron’s spinal fluid contribution – 60 of these difficult to collect spinal fluid samples – something Dr. Mady Hornig called ‘unparalleled’ – but who they’re from that makes them so special. Dr.  Peterson doesn’t routinely do spinal fluid tests; these samples are from patients -often the illest of the ill – he suspected had neuro-inflammatory problems and his superb diagnostic skills means the CFI can have confidence in what kind of patients they’re looking and that’s unusual in ME/CFS research.

This study is not just about pathogens; the Center for Infection and Immunity will be looking cytokines and other biomarkers that could tell us more about the health of ME/CFS patients’ brains. Recent successes documenting  unusual proteins in ME/CFS patients cerebral spinal fluid suggest  the spinal fluid may indeed be the place to look.

Dr. Hornig, the leader of the CFI’s pathogen discovery effort, called the Simmaron spinal fluid samples ‘a really unique opportunity’. It’s no surprise Simmaron made funding this study a top priority.

ME/CFS Cerebral Spinal Fluid Samples –  Meet the Top Natural Killer Cell Experts

natural killer cells

The extensive immune analysis given to Simarron’s spinal fluid samples will provide insights into the immune status of the brain in ME/CFS

We journey halfway across the world down to the Southeast coast of Australia for Simmaron’s next spinal fluid study where the ME/CFS research group led by Sonya Marshall-Gradisnik, PhD, now centered at Griffith University, will be digging deep into the immune profile of the same samples CFI researchers are analyzing for pathogens.

Griffith is now ground zero for  natural killer cell research in ME/CFS.  Griffith researchers recently contributed a chapter on natural killer cell dysfunction in ME/CFS and at the Ottawa conference they  documented the NK cell dysfunction present in ME/CFS,  identified miRNA’s contributing to the NK cell  dysfunction, documented the same dysfunction in T-cells, and identified cytokine abnormalities in the blood. Now they’ll look for these abnormalities in Simmaron’s spinal fluid.

These two studies put the Simmaron Foundation’s spinal fluid samples at the heart of a  double-barreled research effort.  CFI researchers will  determine whether pathogens/markers they’ve found in the blood, saliva, etc. are also in the spinal fluid, while Griffith researchers will determine whether their immune abnormalities show up in the  spinal fluid.  At the end of this process not only will we know a lot more about the brain in ME/CFS, we’ll know much more about where to look for the biomarkers this disorder needs so badly to move forward.

A Multi-Site Clinical Assessment of ME/CFS

CDC multi-site CFS study

Dr. Peterson’s unique focus on immunologically challenged patients will pay dividends in the CDC multi-site definition study.

How to define properly  Chronic Fatigue Syndrome is another issue that’s plagued the field for decades. Perhaps no issue is more important to the field. Inadvertently involving different types of patients, for instance, in research studies could explain the inconsistent research and treatment trial results that have stifled interest in this disease for decades. Drug companies are reluctant to enter into treatment trials for an  illness they don’t feel has a real definition.  The list of negative effects from having a vague definition goes on and on.

With their participation in the Center For Disease Control’s Multi-Site Assessment study, however, the Simmaron Foundation and Dr. Peterson’s Sierra Internal Medicine, will be helping to provide answers to this perplexing and important question.

In this study led by the Open Medicine Institute, Simmaron joins seven other clinical sites to provide electronic data on diagnostic procedures, test results, treatments and outcomes on over 800 patients to the CDC for analysis. The project will, for the first time, produce statistically based analyses of the different subsets ME/CFS practitioners are likely seeing and will bring  the practices and insights of ME/CFS professionals to the fore in scientific publications for the first time.

Once again, Dr. Peterson’s unique focus on immunologically dysfunctional patients will play a vital role in highlighting this significant subset of patients. Promising first results have lead the CDC to refund and expand the project to include more physiological measures.

Charting Long term (gulp) ME/CFS Prognosis

Few studies have looked at a vital subject for most ME/CFS patients; what they can expect in the future.  Is ME/CFS progressive and, if it is, what does it progress to? Some researchers believe ME/CFS may progress to range of other disorders and a recent study found significant fatigue predated the development of multiple sclerosis in many patients. This study will catch up with patients seen at least 10 years ago in Dr. Peterson’s practice and see how they are doing.  The results could profoundly effect our understanding of ME/CFS and will provide physicians important clues how to best manage it.

Post-Infectious Cardiomyopathy Study

Simmaron’s identification of  four  patients in its surrounding community with mysterious  heart problems (cardiomyopathy) provides a new opportunity learn more about the possible role of infection in this heart condition.

Simmaron has recruited the Centers for Infection and Immunity at Columbia University to dig into these patients serum, plasma and other biological samples to see if they can figure why they developed this unusual form of heart disease.  Possible infections will be given a particularly close look.

This study should be published this year.

Conclusion

Dr. Peterson’s years of experience and his extensive data bank have brought new opportunities for Simmaron and for the ME/CFS research field. With collaborative efforts ranging from New York to Atlanta to Australia, the Simmaron Foundation, located in little Incline Village, has developed world-wide connections and is engaged in studies that could redefine ME/CFS, provide vital insights into its longterm prognosis and its neuroinflammatory nature.  Simmaron has been indeed been rising.

 

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9 Comments

  • Simon

    April 4, 2013 at 9:39 pm - Reply

    Good to see the Dr Peterson’s Treasure Trove is now powering so much important research, this is really encouraging and I look forward to seeing the results come in. Really excellent article, thanks

    • Cort Johnson

      April 5, 2013 at 12:46 am - Reply

      Thanks Simon – yes glad to see the work of so many years being put to use :)

  • Dr. Gregory G Cutler

    April 4, 2013 at 9:39 pm - Reply

    Cort, Any way I can get any more information about the “post-infectious” Cardiomyopathy Study? I’ve recently become much more Ill in the last 6 months and finally been diagnosed with a Left Ventricular Cardiomyopathy. My Cardiologist of course knows nothing about CFS, only that it appears “post-infectious” and has reduced my ejection fraction to 40% (n=50-75%). Thanks, Greg

    • Cort Johnson

      April 5, 2013 at 12:47 am - Reply

      Sorry to hear that Greg. This subject needs alot more work! I’ll pass it on and good luck!

    • Courtney Alexander

      April 7, 2013 at 12:02 am - Reply

      Results of the small cardiomyopathy study will be published, and as soon as it is, we will post them. I do not know the timeline. If you have the potential to come out to Incline Village, Nevada, you could try getting in to see Dr. Peterson. The name of the practice is Sierra Internal Medicine in Incline Village. I would make sure to identify the cardiomyopathy diagnosis in whomever takes your message. If you choose to try to set up an appointment with Dr. Peterson, be persistent with his receptionist. Good luck.

  • S Beasley

    April 5, 2013 at 11:58 am - Reply

    I had my DNA analsied, bed bound for 11 years , and showed a Selective IgA deficiency, interestingly others are finding the same. with severe ME, I know the DNA tests are relatively new, but wondered if it could be incorporated into the above studies

  • Mystic Tuba

    April 5, 2013 at 4:34 pm - Reply

    Too bad symptoms are still being looked at instead of causes. Why not check for mycotoxins? Why not pay attention to the people who have had complete remission of CFS symptoms by avoiding exposure to mold? Why all this complex stuff when it is so easy, the evidence already being present?

    • Olana

      April 10, 2013 at 6:32 pm - Reply

      Mystic Tuba, Mycotoxicosis is a condition of it’s own. Some people with M.E./CFS suffer from it, but not all. From reading all of the above it does not seem that they are only focussing on symptoms. Looking at spinal fluid, trying to find pathogens, etc, is looking for causes!

  • Barbara

    May 14, 2013 at 1:04 am - Reply

    How many healthy controls will Dr. Peterson use to statistically validate his findings?
    How does he plan to convince them to have spinal taps, given the many unwarranted misconceptions about the procedure?

    Barbara Cottone M.D.
    anesthesiologist
    16 yrs. w. ME

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