Looking Up Down Under - the PHANU Story
ME/CFS research around the world is pretty spotty. The US and the UK are long-time hubs, with Canada coming on in the last few years. Outside of the Nijs/DeMeirleir work in the Netherlands/Belgium, you can scratch out most of Europe. South of the equator, the picture is bleak until you get to Australia: things are definitely happening "Down Under".
The Lloyd team pulled off the Dubbo studies, which are cited again and again in the literature. Poor funding hampered them from completing more studies but now the PHANU group at Bond University is showing up big time. Piling up papers and abstracts at the Ottawa IACFS/ME conference, they were easily the busiest group to present there. In a short time they’ve become one of the bright lights in the ME/CFS research universe.
Who is PHANU?
PHANU (Population Health and Neuroimmunology Unit) is an ME/CFS research unit created just three years at Bond University in the Gold Coast of Australia to conduct studies into autoimmunity and neuroimmunology. The lab was established in response to World Health Organization report stating that neurological/neuropsychiatric disorders contribute greatly to the worlds 'disease burden'.
Don't be fooled by the cover words...this is an ME/CFS lab through and through; one of the few almost exclusively devoted to this disorder. Lead by Dr. Sonya Marshall-Gradisnuk of Bond and Dr. Donald Staines of Queensland University their stated goal is to
“examine how an immune response impacts on neuro-degenerative diseases such as Chronic Fatigue Syndrome.”
With her background in exercise immunologyDr Marshall-Gradisnuk has been on something of a tear recently, co-authoring 15 studies in the last two years. Dr. Staines 2004 theory suggested CFS was an autoimmune disorder involving vasoactive neuropeptides. Both researchers were signatories of the International Consensus Criteria for ME (ICC).
A Turning Point For PHANU
Science Symposiums clearly work. The Alison Hunter Memorial sponsored International Science Symposium on CFS/ME in 2010 led by Dr. Staines and Dr. Marshall-Gradisnuk clearly burnished PHANU's visibility. Since then, they’ve collaborated with two prominent neuroimmune physician/researchers: Dr. Klimas (Institute for Neuroimmune Medicine) and Dr. Peterson (Simmaron) and their funding has soared.
In a era of diminishing resources, PHANU has been adept at cobbling together enough small grants to get put some real money (@$1,000,000 over several years) into ME/CFS research. A 2009-11 $550,000 Queensland Government grant went to “Validation of novel biomarkers for CFS/ME.”.
Earlier this year PHANU scored a big four year grant for $831,037 from the Mason Foundation. It wasn’t just a big win for PHANU; in what must be a first for a chronic fatigue syndrome research group, PHANU somehow received one of the largest grants ever to Bond University faculty, leading Vice Chancellor Stable to applaud them:
“This is a fantastic achievement for Bond, and demonstrated the credibility and momentum of the CFS research platform at Bond in the highly contested area of biomedical and clinical research. I applaud Dr. Marshall-Gradisnik and her team for their recent success and their dedication.”
The grant will fund what the unit called “the largest-ever collaborative international CFS project” involving PHANU, Queensland Health, Dr. Peterson’s Simmaron Research Foundation and Stanford University.
Building the Foundation for Progress in ME/CFS: the Mason Foundation
Recently we've seen, with the advent of the Chronic Fatigue Initiative funded by the Hutchins Family Foundation, how important private Foundations are to the ME/CFS research effort.
Formed in 2003 to provide research funds for CFS and Alzheimer’s disease, the Mason Foundation awarded over $1 million to CFS and Alzheimer’s researchers in 2009 alone, and pledged to provide up to $900,000 a year after that with 60% of that awarded to ME/CFS researchers. They have been funding PHANU for several years but, now, based on some good preliminary data from PHANU and Simmaron, they decided it was time to give them an extra boost.
PHANU has particularly strong ties with the Simmaron Foundation and Dr. Peterson. Dr. Peterson is an adjunct professor at Bond University and Dr. Marshall-Gradisnuk serves on Simmaron's Scientific Advisory Board. Dr. Peterson and Simmaron have gone so far as to send spinal fluid samples and recently patients all the way to Australia to access Bond's technologies. When I asked Dr. Peterson why he was taking the trouble to do that he said 'because they're the best'.
The recent Rituximab finding is playing right into PHANU’s focus on immune abnormalities and it’s clear that PHANU wants to take a lead in this area. As she accepted the Mason Foundation grant Dr Marshall-Gradisnik, highlighted the Rituximab findings and laid the groundwork for a drug trialgrant from the Judith Jane Mason & Harold Stannett Williams Memorial Foundation (the "Mason Foundation").
“Recent independent research from Norway has found that it may stem from an abnormal immunological system which is very much in line with the research we have been conducting at Bond and indicates that we are on the right track."
“This latest grant from the Mason Foundation will allow us to significantly progress our work by conducting a pilot study which could then lead to a drug trial.
Moving Upwards - From Bond to Griffith
Bond University has been very good to PHANU and Bob Miller, one of three patients traveling to Australia Simmaron Foundation sent to Australia for a comprehensive workup, described a well-equipped lab - the largest ME/CFS lab he had seen.
With their sophisticated lab PHANU had a good gig going at Bond but they're moving on….As interest in their work has grown suitors have come calling and recently Griffith University, a much larger university made Dr. Marshal-Gradisnuk an offer she'd couldn't refuse - a substantially larger lab in a new wing they're building.
The lab is a quick skywalk to the hospital providing easy access to medical facilities and, of course, they're hooked in the academics as well, it’s a true Center for Excellence down under - the largest and most sophisticated in the world….
An Optimistic Group
PHANU is full of optimism, even boldness. You have to be, to publicly state some of the things they’re stating. A diagnostic test is a CFS researcher's grail; such a test would presumably toss the symptom-based questionnaires out the window, give the disorder immediate legitimacy and drive researchers to focus on it. Many complex disorders don’t have a simple diagnostic test, but PHANU thinks one is possible for chronic fatigue syndrome in the next five years.
"Ultimately our aim is to develop a clear diagnostic test for CFS and establish a national testing facility here at Bond University, which we believe could happen within the next five years.”
PHANU does not believe ME/CFS is an impossibly complex condition or some sort of waste-basket disorder that defies research or treatments at all. Dr. Staines believes both a biological explanation for ME/CFS AND a suitable treatment for it may not be that far away at all.
“PHANU’s research may bring new hope to patients suffering from some of these conditions,” said Dr. Staines,“that a biologically plausible basis for their illness exists and that treatment, based on these research findings, may be just a short step away.”
Hopefully PHANU, in collaboration with other research groups, will succeed where others have failed and finally crack the diagnostic conundrum and give ME/CFS research a strong foundation for success. With PHANU, the Chronic Fatigue Institute, the Klimas Neuroimmune Institute and the Mt. Sinai and Simmaron research groups springing up in the last year or so, and the CAA launching a strong suite of studies, as well as with Dr. Lombardi working away at the WPI (don't forget the WPI..), AND with the Open Medicine Institute coming on the scene, we're seeing an unprecedented amount of private/non-profit funding coming into this disorder.
Don't expect too much yet - this is a building period for many of these new groups - and most are small but they appear geared to work together to tackle the issues in CFS. There's definitely a new breeze blowing in ME/CFS research circles.
- Part II: An Interview with Dr. Sonya Marshall Gradisnuk
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