'PHANU Rising': Australian Chronic Fatigue Syndrome Research Lab Making Waves: Pt I

(PHANU, located in the Gold Coast region of Australia, has made major strides in 3 years.)

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'.

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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.

Real Money

(The Alison Hunter Memorial's 2010 Conference sparked collaboratiive between PHANU and several researchers)

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'.

• Rich Carson's Appeal For Funds for a Simmaron/PHANU project
• For More on Dr. Peterson

Autoimmune Focus

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

( PHANU is moving to a new wing in Griffith University)

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.”

Conclusion

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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[/quote]View the Post on the Blog

Thanks for this post, Cort. I only just realized the urgent need to raise money for the first phase of the large study that the Mason Foundation will then progress to fund. I have just donated $25 at the Simmaron website (wish I had a bigger income than disability allowance...) - I hope many of us can contribute!

From Rich Carson’s Appeal For Funds for the Simmaron/PHANU project:
"The Mason Foundation in Australia believes in this research so much, it has dedicated $830,000 to fund the second part of what is the largest-ever collaborative international ME/CFS project. But with one caveat: phase I of the study must first be funded.
Patients have already raised the first $87,000 of the $225,000 needed to complete phase I, thanks in particular to the kind generosity of Linda Tannenbaum of the Neuro-Immune Disease Alliance, Inc. and to your recent donations. Patients and our loved ones are the heroes after all. But we are still short $138,000.
That means $830,000 in possible ME/CFS research is up for grabs. All we need to do is raise $138,000 more to get it. We can't count on the government. But we can count on ourselves to do what is right, and we can count on support from our family and loved ones. "
http://www.prohealth.com/library/showarticle.cfm?libid=17164

Donate here:
http://simmaronresearch.com/donate/

Thanks Anne,

I believe it was Simmaron data that got PHANU this big grant; I heard it was kind of head turning data. Rich's appeal is focused on being able to use all that money - its vital that we get it.

I hope you win the lottery

Thanks very much for this Cort, really good to read more about this even though I've been involved in the study. Just a little correction - it is Griffith University (no 's' at the end).

Thanks heaps for your article on this Cort (and Rich Carson) for making people aware that there is also very important research in Australia which also needs funding.

Its the working together of all these small different groups, which is helping pull things together and I believe will end up leading to answers due to this working all together to get the studies done that we need. We can not rely on government funding etc to solve this illness (thou the Queensland Gov has been good, its a pity that the rest of the states in Australia arent putting funding into ME/CFS).

"Earlier this year PHANU scored a big four year grant for $831,037 from the Mason Foundation."

I'd like to point out to people that the Mason Foundation has been around (also the Alison Hunter Foundation also funding our studies.. Both these are small private foundations dedicated in helping us find a cure etc) . They both been around a very long time and have both immersely helped ME throughout the years.

The Mason Foundation also for years and years also funded the Adelaide CFS research group who has done and published many good CFS studies (on biological issues in CFS eg) . The think the Adelaide research group (or researchers who were in that group) are still involved in CFS studies so we may see another soon in the future (this group does a lot of MRI, spect scan studies and have did things like lactate studies in the past)

Some other studies Ive just found that the Mason Foundation helped fund (these arent the Adelaide research group ones which I they also have). (im not sure if Ive seen all those studies published yet.. so i guess we have some on the way).
"
Funding Sources
The Mason Foundation: Vollmer-Conna U, Burton A, Lloyd A. Reduced parasympathetic (vagal) activity in post-infective chronic fatigue syndrome. 2011: $99,890.
The Mason Foundation: Vollmer-Conna U, Burton A, Lloyd A. A comprehensive study of autonomic activation in post-infective chronic fatigue syndrome. 2010: $99,850. ref no 10906
Mason Foundation: Piraino B, Lloyd A, Vollmer-Conna U. Variation in the P2X7 gene predicts onset of post-infective syndrome. 2010: $98,226. ref no 10909
Mason Foundation: Vollmer-Conna U, Lloyd A. Defining genetic determinants of post-infective and chronic fatigue syndromes: Confirmatory and functional studies. 2009: $ 99,564.CT9965
Mason Foundation: Vollmer-Conna U, Lloyd A. Autonomic nervous system functioning in post-infective and chronic fatigue syndromes. 2008: $89,845.
Mason foundation: Vollmer-Conna U, Lloyd A, Dawes I, Lan R. Post-infective and chronic fatigue syndromes after acute infection: What can we learn from genes?
2007: $ 98,895
Mason foundation: Lloyd A, Malhi G, Lagopoulos J, Vollmer-Conna U. The neurobiology of post-infective fatigue syndrome.
2007 - $98,776 "

sorry if my other post is so messed up with its words.. this dont allow editing once posted and I now can see mistakes everywhere. I hope mistakes dont confuse anyone.

Thanks Tania

Very interesting about those studies

• The Mason Foundation: Vollmer-Conna U, Burton A, Lloyd A. Reduced parasympathetic (vagal) activity in post-infective chronic fatigue syndrome. 2011: $99,890.
• The Mason Foundation: Vollmer-Conna U, Burton A, Lloyd A. A comprehensive study of autonomic activation in post-infective chronic fatigue syndrome. 2010: $99,850. ref no 10906

I don't think we've seen these two and maybe others...Glad to hear the Dubbo researchers are getting some work...

Got several emails and the posts here from Aussies about 'Griffith' University - I fixed the boo-boo. The Gold Coast looks like a beautiful area by the way.

This is great - but the folk involved don't seem to know about the work going on in Dundee!
I've tracked this link down - but there's been a lot more done since 2008.

http://www.meresearch.org.uk/research/studies/2008-09/artstiffness.html

One million USD?
In medical dollars, that's coins lost in the couch.

In CFS dollars, though, that's huge and if you do it right you can turn it into big bucks (at least for us). Using the money on pilot studies that turn into federal grants could turn that money into 8-10 million dollars; the CFIDS Association was able to do something like that with their studies.

Look at what the CFI is doing on a couple of million dollars; for one a comprehensive pathogen study by one of the top virus hunters that will surely go a long way to settling that question. If that comes up positive that should spark other studies. I agree that its not 10 or 20 or 30 million but its progress - forward movement

"Outside of the Nijs/DeMeirleir work in the Netherlands/Belgium, you can scratch out most of Europe."

Hey, don't forget Norway! Both the effort at Oslo University led by Barbara Austrheim-Baumgarten (her ME/CFS unit is creating an ME/CFS biobank and launching some really interesting biomarker research), and the Rituximab/Enbrel/possible autoimmunity work done by Oystein Fluge and Olav Mella in Bergen.

PS, about Norwegian research: I would advice a little caution, though, when it comes to research from Vegard Bruun Wyller, a pediatrician with his feet planted firmly in the psychosocial camp. Even though both he and Barbara Austrheim-Baumgarten are at Oslo University Hospital, they are in two completely different units (Wyller being in charge of the Pediatric ME/CFS unit) and have very different views on ME/CFS (Baumgarten believes it's a physical disease, Wyller believes it has strong psychological components and is likely related to stress). Wyller promotes CBT and GET and it's unclear how stringent his inclusion criteria are for the research projects he runs.

Ahh...good point Emma - how could we forget Norway at this time????

Thanks so much for the article, Cort. Very interesting, and informative. It's fascinating how so many ME research groups seem to have sprung up over the past couple of years. Glad to see that PHANU are looking at Rituximab.

Don't know that much about Wyller but my guess is that he sees the upregulated sympathetic nervous system functioning findings (fight or flight) and goes for therapies to down-regulate that system? The autonomic nervous system (of which the SNS is a part of) is one system we can exert 'some' control over...I don't think its the entire ball game at all - I think they need to dig much deeper - the rather mild SNS problems can't explain ME/CFS in my opinion - but there is something in there.

I think all researchers should be encouraged to dig deeper