Cort
Phoenix Rising Founder
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My report on the Interview on the XMRV Buzz page
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Vice President of WPI Mike Hillerby Talks - Mike Hillerby spent almost an hour on KUNR talking about the WPI, XMRV and CFS. It turns out that the WPI has several good spokesman as Mike turned in an engaging and articulate performance. (He even has a good radio voice). They went through the history, talked a bit about the difficulties of Dr. Peterson's early years and the orastracism he faced in Incline Village. He noted that CFS was not a psychological disorder but then asked who wouldn't get depressed at some course if you had a unremitting illness with no cause, no treatment, little recognition and little research?
At one point he and Dan Erwine discussed how the psychological interpretation of the disease had reduced funding for it - something that I disagree with. Psychological disorders get enormous amounts of funding; if CFS was an identified psychological disorder the disease would move into the National Institutes Of Mental Health where it would* surely receive a lot of funding. The funding problem, in my opinion, is that CFS is viewed as a 'nothing', a wastebasket disorder that is impossible to study.* The CFS patients don't trust the definition and neither does the research community - they don't think there's any cheese down the CFS tunnel.
XMRV Prevalence - XMRV prevalence rates in CFS have held strong at the WPI over time and perhaps have even increased. Mike stated that 80% of well identified CFS patients have tested positive for XMRV. This is considerably higher than the 66% postive rate (if I remember correctly) reported by Dr. Lombardi at VIP Dx some months ago and could reflect either a different patient cohort at the WPI or improved recent testing measures. He also stated, as we've heard before, that XMRV is being found in other neuro-immune diseases
Phone-ins - In one of the early phone calls a woman who had CFS in high school and had been unable to attend classes for three months reported that after going to Johns Hopkins and following their protocol of a strict schedule and wake up times, an hour of exercise daily and salt tablets that, although it was extremely painful, she recovered completely and had been recovered ever since then. Her story just goes to show how diverse the CFS population is. Many people with CFS, after all, have gone to John Hopkins, tried their protocols yet this is the first positive story that I've heard.
Scientific Symposium? - apparently the WPI will shortly be holding a Scientific Symposium on XMRV that will include researchers and physicians from around the US. It's apparently an invitation-only event as there's no mention of it in the Events section of the WPI's website. Reports are its being held from 2-4 pm on the 16th.
Clinic Opening - the building the Institute is part of is going to open on the 21st and the research staff will presumably move in but its going to take some time for the Clinic to open. The Medical Director's position is still open, other staff still need to be hired and Mike felt the clinic would probably not open before Fall or the end of the year. It should be exciting when it does - Mike related how Dr. Peterson and Annette Whittemore got together several years ago to create a place where they could send findings from the bedside right to the research lab and then back to the bedsidel. They envisioned a place where researchers and physicians* were in close communication (ie translational research). It'll be fascinating to see who is picked to fill Dr. Peterson's considerable shoes.
The Failed Validation Studies - when it came to talking about the failed XMRV studies, Michael was very diplomatic saying simply that they had used different methods, that the types of patients may have been different, that XMRV may have genetic variations in different groups of patients and that the WPI was continuing to reach out to researchers around the world to explain the techniques and provide them with validated positive samples.
The Future and the Past - what does he see in the future? Alot of complicated work determining who has XMRV, where in the body it's found, what it's viral loads are, how it might be treated, etc. He also sees greatly accelerated progress (a 'bright light at the end of the tunnel'), in both XMRV and CFS itself. If XMRV is validated he expects researchers from major institutions across the US and the world to jump on board. The last year and a half must've been a whirlwind for the WPI: "I don't think any of us" he said, referring to the creators of the WPI "would have thought we would have come as far as we have in this short time"...Neither they nor us - that's for sure. It's been a remarkable ride, indeed, for an Institute that is finally going to really open its doors in the next couple of weeks.
