ME/CFS AUSTRALIA (SA) INC
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South Australia 5007
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ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
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Phoenix Rising's 2008 Researcher of the Year
Saturday 12 December 2009
Phoenix Rising 2008 Researcher of the Year: Dr Suzanne Vernon
By Cort Johnson
The Researcher of the Year analysis doesn't just take research into account; it also includes their outreach into the patient community and their impact on how the research field is functioning. This year the Researcher of the Year was an easy choice. Dr. Vernon excelled in all three categories.
(As she did in 2009. I only got to the 2008 Researcher of the Year award late in 2009 but my tardiness only worked out to Dr. Vernon's advantage; in 2009 she picked up on and expanded her work with the exciting new International Research Network - this award includes work done in both years)
Dr. Vernon made an enormous leap when she left a the security of a 17 year career at the CDC to become Scientific Director of the CFIDS Association America (CAA). As Scientific Director she was tasked with redoing the CAA’s research program, interacting with government officials to stimulate their efforts, with bringing new faces into the research field and in general trying to make the entire ME/CFS research field more effective and productive. She has accomplished all of these and it wasn’t easy.
A Difficult Field - ME/CFS researchers are all over the map - or rather the body; they’re studying everything from viruses to the HPA axis to the vascular system. These factors may all connect together in this disease but unfortunately the researcher usually don’t. Virologists do not typically interact with endocrinologists and endocrinologists don’t usually spend much time with cardiologists. Unfortunately if we’re going to understand this disease, though, those are the kinds of conversations that are needed.
It doesn’t help that most ME/CFS research ‘programs’ consist of one or two researchers working on a shoestring by themselves. It’s difficult to build the kind of communication that drives so much innovation in science when you're isolated and poor. Plus the shoestring budget most ME/CFS researchers work on means that many of them simply don't have the money to even begin to assess their theories.
Dr. Vernon well recognizes that these things have inhibited our progress in understanding CFS. In an at times biting speech at the IACFS/ME conference Dr. Vernon laid out all that the research community hasn’t accomplished in the last 25 years; good diagnostic criteria, biomarkers, identifying subsets, clear treatment programs, etc. XMRV may or may not the big answer the ME/CFS community has been waiting for but it’s clear that the present ‘Go It Alone’ approach which consists a lot of small teams working by themselves - is not working for them and it's not working for us.
How to maximize research efforts? Dr Vernon’s answer is to bring new faces into the field and to above all have our research community be innovative and collaborative in their its approach to this disease.
New Faces/New Approaches
Bringing in new faces with their new ideas and resources is critical. Earlier in this decade with the apparent failure of pathogen and most immune research the research field was in stagnation. That’s not so now but with federal funding levels declining dramatically over the past 10 years ME/CFS is definitely not a field most young researchers would want to bet their careers on. That fact that a postgraduate ME/CFS position with a top researcher at the National Cancer Institute lay unfilled over the past year speaks to the wariness researchers have of embracing this illness- getting new blood into this field is difficult!
Dr Vernon has, however, gotten researchers interested. Almost a third of the researchers that took place in the three day Banbury Brainstorming Session (see below) have not published on ME/CFS. Similarly Dr. Vernon got a slew of new researchers to produce multi-university grant proposals for the stimulus package. With her guidance the CFIDS Association is looking at formerly untapped funding sources at the Department of Defense.
Under Dr. Vernon’s management both the CAA’s Scientific Program and the ME/CFS research field itself has become broader and more varied…and considerably more interesting. I asked her how she did gotten new researchers interested in this field?
Scientists are a naturally curious lot and many like challenging problems. I like matching up the specific research needs with the right kind of investigator. For example, I knew modeling was important for CFS so I found folks working on modeling various biological systems and introduced them to CFS. Of course it helps to have money to support research – in addition to being curious; scientists are hungry for research dollars!
They’re also hungry for innovation, which is good because innovation permeates the CAA’s Research Program.
A Novel Approach to Research at the CFIDS Association
Researchers beware! The CFIDS Association doesn't just hand out grants any more; if tweaking your grant will make it more effective Dr. Vernon has shown she is perfectly to will do that. Three of the six teams funded by the CFIDS Association smashed the normal boundaries seen in academia and research. The group studying inflammation and metabolism in the brain CFIDS Association Research Initiativeis now collaborating with the group examining autonomic nervous system problems in the body. Then these two groups are handing off their data to a third group, which may have the most difficult job of all; analyzing both groups data together to create (hopefully) a model of inflammation/ autonomic nervous system/brain dysfunction in ME/CFS.
Researchers funded by the CAA are now also required to ‘bank’ samples for future use by other researchers, to meet strict deadlines and to collaborate. In that vein Dr. Vernon persuaded the National Institute of Health to produce a WIKI or a secure information gathering site for the CAA’s researchers. Plus in the past year all the researchers funded by the CFIDS Association have met twice personally for multi-day conferences to discuss how their findings interact with each other.
In the research realm where ideas are the coin of the realm collaboration is essential. Prior to Dr. Vernon’s efforts the only formal venue for collaboration took place once every two years at the IACFS/ME conferences. If she has her way ME/CFS researchers - through small intensive conferences and the NIH WIKI and other arenas - will be interacting much more frequently in upcoming years.
“A Nexus For Chronic Fatigue Syndrome” - the Banbury Workshop
CFIDS Association Banbury WorkshopThe CFIDS Association's efforts to foster collaboration and creativity culminated in the Cold Harbor meeting in Banbury Center in 2009. The conference's title “From Infection to Metabolism: A Nexus for Chronic Fatigue Syndrome” evoked the kind of ‘connect the dots’ approach that permeates Dr. Vernon’s approach to this disease. Getting the Banbury Workshop together wasn’t easy. First Dr. Vernon had to get CFS on Banbury’s crowded agenda. Then a grant proposal to the NIH to help fund the conference had to be approved. Then CFID’s Association of America to come up with their financial contribution during economically trying times . Ultimately 35 researchers - almost a third of whom had not been formally tied to ME/CFS before - spent three days intimately discussing chronic fatigue syndrome (ME/CFS) - something that hasn’t happened in years. They also laid the groundwork for Dr. Vernon’s and the CAA’s biggest and most important effort - An International Research Network.
I asked Dr. Vernon how the Banbury Workshop how it went.
Cold Spring Harbor Laboratory (CSHL) is located on Long Island, NY. CSHL is a prestigious institute and provides the perfect setting for brainstorming workshops. Our workshop was held at the Banbury Center, the venue Cold Spring Harbor Laboratory uses for small, invitation-only workshops. Participants stay on the campus in dormitory-like rooms and for 3 days, we eat together, work together and really get to know each other. Eleanor Hanna of the NIH and I organized this meeting and invited CFS investigators with current funding from the NIH and from the CFIDS Association. A handful of investigators and clinicians who do not have current funding, but could be an asset to the research network, were also invited.
After 2 days of excellent presentations and discussions, we spent the last day deciding whether and how to move forward with a research network. The majority of the participants agreed a research network was important and wanted to be a part of it. We agreed on how to start and identified types of funding to pursue for support. In addition to this “big picture” outcome, there were new collaborations formed between investigators and ideas and information exchanged. The investigators who want to be part of the CFS research network agreed to meet at the Banbury Center of CSHL again next year. I have applied for an R13 small conference grant in hopes of making it happen.
I wondered if she anticipated a Banbury conference every year? Interestingly she hoped not - because she wanted to outgrow it rather quickly it.
If we receive funding for the CFS research network, it will likely expand to other interested CFS investigators and we would outgrow the Banbury Center – which is limited to 35 people. It is absolutely necessary to have at least 1 meeting of CFS research network investigators a year. We can hopefully coordinate with the IACFS/ME during the years that meeting occurs to show the community what the CFS research network is and to identify investigators who are interested in becoming a part of it.
Dig Deeper! Check out the CFIDS Association Facebook site for photo's from the meeting
A Bold Effort
Collaboration - Dr. Vernon believes increased collaboration will be essential for our research communities success. She knows the power collaboration can unleash. The Pharmacogenomics projects she lead at the CDC - which ended up thrusting ME/CFS into the research spotlight and helped triggered the National Press Conference - was the result of a single discussion at a conference.
The need to foster collaboration, maximize resources and speed up the pace of research lead Dr. Vernon to produce her boldest project yet; the creation of an International CFS Research Network. I asked her to explain more why a Research Network was needed.
Currently there are CFS investigators throughout the US – many working autonomously or in small collaborative groups. What we have found is that some investigators have promising laboratory techniques and biomarkers for CFS, but no clinical samples to test these on. Further, there are clinical researchers with great medical records and samples but without the time and expertise for laboratory research. This research network brings these types of investigators and resources together and collaborations almost naturally occur.
Have research networks of this type have formed in other diseases?
There are now numerous examples of the need for and success of research networks and consortiums. These are needed because most of the public health problems we have to solve are incredibly complex, with no one investigator or discipline able to comprehend all there is to know. Examples include autism, cardiovascular disease, diabetes, and infectious disease – there are research networks for each of these.
Once researchers in the network get their data they’ll bank it in a central repository which other researchers can mine for information. They’ll also bank blood and tissue samples. Take a simple thing like sample collection. Small research efforts can often not afford to spend a great deal of time and money advertising for patients, assessing and characterizing patients. I know of several studies have been held up for considerable amounts of time simply because researchers could not get enough samples. Consider how much quicker progress could move if researchers had a central Sample Bank they could simply request samples from.
Another problem concerns standardization. As crazy as it may sound ME/CFS researchers are using different tests and different techniques to study the same problem. This means it can be difficult to compare tests across studies. When a community is only producing a relatively small number of studies a year that’s a significant problem. Just getting researchers to develop gold standards for testing could help significantly
We are starting by developing best practices and standard operating procedures using a collaborative wiki space. CFS research network investigators will be in working groups and tasked with developing best practices and procedures and investigators will be in working groups according to their area of expertise. For example, we can have working groups for best practices related to imaging brain metabolism, measuring orthostatic intolerance, standardizing actigraphy, etc. Once working groups derive best practices and procedures, these are vetted through a peer review process and then disseminated to the clinical and research community, as well as the patient community when the information is relevant.
Chronic fatigue syndrome (ME/CFS) networkingIt could go further than that. Dr. Cheney, for instance, has a well characterized patient base and presumably enormous amount of data on diastolic functioning on his patients but has never been published it in a major journal. A Research Network could concievably provide him and others the opportunity to get the assistance they need to publish. Sometimes it’s just a matter of getting people together.
Dr. Vernon is not the first to think a research network would be a great thing. A big problem - not surprisingly - has always been money; how does a poorly funded and scattered group of researchers get the resources to band together? Money will obviously be needed but Dr. Vernon wants to use federal resources as much as possible.
As for data sharing, in collaboration with academic colleagues we are looking at existing research network databases that we can leverage. Some of those we have been looking into were developed either at the NIH or with NIH funds. These are available for use by the research community. Because several of these research network databases are up and running – they have addressed issues such as privacy, data access and sharing, intellectual property; in other words, existing resources are available that have already addressed the sociologic and technologic challenges associated with research networks!
The network is just getting off the ground. When asked how big it is right now Dr. Vernon stated
The only established research network is the one I coordinate for the Associations funded investigators. This includes the 6 PIs along with 20+ co-investigators. Drs. Lenny Jason, Julian Stewart and I are applying for NIH funding to expand this research network to include many of the investigators who were at the Banbury meeting in September. Right now, we have letters of support from 25 of the 35 investigators that participated.
Getting researchers working together and sharing ideas data and samples would benefit all of us. Hopefully Dr. Vernon and the CFIDS Association will find the funding to get this network established.
Dr. Vernon could have won the award simply on the strenght of her research. Somehow as all this was going on Dr. Vernon managed to publish six papers on chronic fatigue syndrome (ME/CFS) in 2008. Illustrating a remarkable breath of interest and expertise the papers focused on such subjects as the serotonergic system, inflammation and immune signaling, altered neuro- immune and immune networks, exercise, cytokines and a possible genetic marker.
(In 2009 Dr. Vernon outlined an innovative model which suggested the HPA axis of ME/CFS patients might be stuck in a suboptimal loop. The solution? For a very short period of time mop up as much cortisol as possible in order to force the system to reset. No one to my knowledge has tried this yet.)
Dr. Vernon's Recent Research
Since XMRV is on top of everybody's mind I wanted to get her take on some aspects of XMRV that are germane to the CFIDS Associations and others research efforts
XMRV is a really exciting, really hot finding. A lot of non XMRV research findingsnbsp; have been developed over the years; there’s the low blood volume, the HPA axis abnormalities, the metabolic related exercise problems, the orthostatic intolerance, the gastrointestinal enterovirus findings, etc. There are alot of research findings that can’t at least at this point be directly linked to XMRV. Lets say XMRV is the ‘Game Changer’ in ME/CFS; will research focused specifically on those areas still be relevant?
Absolutely relevant! I hope that XMRV is replicated as it provides a clear biologic basis for CFS and a context for the ongoing pathophysiology CFS research. Once this is done, we will potentially have a context for low blood volume, the HPA axis abnormalities, XMRV, etc. It is worth noting that even though we can detect HIV and have antiretroviral therapy, people who are managing their HIV infection still have a variety of health issues to deal with including serious endocrine and metabolic problems to name a few.
XMRV in Chronic fatigue syndrome (ME/CFS)The CDC research team has done a lot of research on the HPA axis and you developed a model suggesting that ME/CFS patients had become kind of trapped in a dysfunctional HPA axis feedback loop. You also developed a model which suggested that briefly reducing cortisol levels to very low levels could cause ME/CFS patients systems to kind of spring back into normal functioning. XMRV has cortisol receptors. Can you explain how XMRV, cortisol and the HPA axis might interact?
The HPA axis is our body’s “flight or fight” 24/7 system – in other words, it gets activated when the body needs to respond. This can be in response to infection, physical trauma, stress, etc. The HPA axis is also a very dynamic system that must respond when needed and stand down when not needed. Cortisol is one of the major chemicals that mediate the HPA axis response system. When the HPA axis system is alerted, cortisol is produced by the adrenal glands and pumped out into the circulation. There it signals to immune cells to produce cytokines to help fend off the infection or heal the wound.
Immune cells do this because the cortisol enters the cells, binds to the cortisol receptor in the cell and this complex moves into the nucleus where it regulates cell transcription. When it is time for the HPA axis to stand down, cortisol travels to the brain and signals to the hypothalamus to return the HPA axis to standby. There are several viruses that can persist and remain latent in immune cells. It is possible that these viruses alter the function of the cell where they reside.
What is the CFIDS Association doing regarding XMRV?
Since we learned about XMRV through the press release issued by WPI, NCI and Cleveland Clinic and then the Science paper once it was published, we have been busy gathering additional information on the many research and policy implications this important study brings. There are many investigators interested in replicating these findings who need funding to do this work.
At the CFSAC meeting in October, investigators with NIH existing grants were encouraged to apply for supplemental funding, so we contacted funded CFS investigators to encourage and support supplemental requests. This has involved "matching" lab researchers to clinicians who can provide appropriate patient and control samples for testing. We are currently raising funds through our "SolveCFS Campaign" in hopes of issuing another request for proposals (RFP) aimed at early detection, objective diagnosis and treatment of CFS; XMRV proposals would certainly be responsive to such an RFP.
We are also seeking up to date information from the various federal agencies now involved in the XMRV research and response. Interestingly, the detection of XMRV in 3.7% of healthy controls, as reported in the Science paper, raised potential concerns about the safety of the general blood supply. As also discussed at the October CFSAC meeting, the significance of XMRV in the blood supply will be determined by investigators who are expert in dealing with blood supply safety issues and have experience with other infectious agents that could compromise the blood supply.
We are working closely with many different institutions and agencies with each new development so that we understand what types of optimized XMRV assays will be most effective for use in larger studies that will advance collective understanding of the role of XMRV in CFS. Although in many ways the past 2 months have been hectic the CFIDS Association has been doing what we have always done and do best – advocating for and supporting research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment.
The CFIDS Association is a small organization and much work remains but Dr. Vernon has brought a spirit of innovation and vision to this field that is sorely needed. Given that it was no surprise that the Research Community jumped to their feet and applauded when she was accepted an award at the IACFS/ME Conference. Phoenix Rising is proud to have her as its researcher of the year for 2008.
The above article originally appeared here.
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