We envision a world where ME/CFS is treatable and well-understood. To get there, we are scientifically redefining ME/CFS.
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:
- screen for 18 viruses, bacteria or protozoa already associated with ME/CFS. If that hunt proves unsuccessful they will
- sequence everything in the blood to look for known and unknown viruses
- then develop tests for any new pathogens they find as well as
- look for unique protein signatures and
- 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
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
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
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.
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.