25:40 Hillerby “In a couple of weeks we’ll be hosting a scientific symposium here and have some great physicians and researchers from around the country, the National Cancer Institute, NIH, others coming to the medical school and to WPI to be a part of this research."
25:55 Erwine: "It must be gratifying to have people coming from all around the country, and all around the world, just to come and see what you folks are doing"
A couple of weeks!That sounds like it will be pre-1st International Workshop on XMRV. How great that all these physicians and researchers will learn what WPI has to offer first - and then go to the workshop with that knowledge base.
First off, kudos to KUNR for being so quickly responsive to requests to have the interview posted.
I was extremely impressed by both WPI VP Mike Hillerby, who is as good as Dr Donnica Moore at squeezing every iota out of a soundbyte, and covering every base, and Dan Erwine, an astute, informed and sympathetic interviewer. And Mike's main message was that research and results are happening much more quickly than they expected, and that this is a time of hope.
Here are a few points I transcribed. After a few seconds for the podcast to load, you can move the cursor to approximately the time you want.
24:43 Hillerby: in some cases a retrovirus can quit expressing itself......(pairallels with HIV/AIDS)
25:12 We have a lot of research left to understand how XMRV is spread, how it operates in different people’s bodies, why some people have it and aren’t showing any... uh, aren’t symptomatic. A lot of work is left to be done on that.
25:28 And now it’s about is this in fact a diagnosis tool. Can it be a diagnostic tool for CFS and other diseases? We need to continue to do a lot more work. More researchers are getting very intrigues and very involved in the field
26:00 the clinic part won’t come til late in the fall
(note: the last 2 points are summaries, not transcriptions)
44:07 Long-term plan to have a list of good ME/CFS doctors
50:58 Planning on having a clinic where doctors work hand in hand with researchers
The only thing I didn't like in the whole 52 minutes was the introduction, where Erwine said that symptoms include a constant exhaustion that leads to a type of depression. Noticeable place for such a misleading statement.
One needs to be really with it to manage to get throu all that and take it in.. I had brain burn out and struggled to understand the last half an hr of it so I advise to try listening to it in one of your better moments. Very good to listen to thou.
I sent the following email to them .. maybe some others will also try to get them to change the "Chronic Fatigue" of the heading to "Chronic Fatigue Sydrome". Its kind of ironic they have put the wrong heading when they actually did discuss the differences between chronic fatigue and chronic fatigue syndrome in the segment.
As a CFS/ME patient who first got this illness 13 years ago when I was in my 20s while at collage, (now on a disability pension as im completely unable to work), firstly Id like to say thanks for making public such a controversial subject. I thought that Interview and talkback session on this was excellent and it was great to see that your guest speaker was extremely knowledgable on the condition.
Im wondering thou if you could please change something thou. Your page at http://www.publicbroadcasting.net/k...e/1/0/1685395/Nevada.Newsline/Chronic.Fatigue is calling the illness "chronic fatigue" rather than chronic fatigue "syndrome". Chronic fatigue is a completely different thing to Chronic fatigue syndrome as "chronic fatigue" is in all kinds of illnesses. This is one area the general public seems to be already often confused over with thinking that chronic fatigue is in fact chronic fatigue syndrome when this isnt at all the fact. Could you please change this title to "chronic fatigue syndrome" as it should be headed.
(A CFS/ME sufferer in Australia)
RENO, NV (KUNR) -
Dan Erwine looks at research into the causes of chronic fatigue syndrome being conducted in Reno by the Whittemore-Peterson Institute. The institute moves into its new home at UNR's Center for Molecular Medicine this month. In the studio is Mike Hillerby, Vice-President of the Whittemore-Peterson Institute.
Copyright 2010, KUNR
Thanks again for this great thread. Talk about uplifting! What really struck me was the evident empathy that both interviewer Erwine and Mike Hillerby demonstrated. Hillerby also really knows his stuff - and knows when to appropriately reiterate that he is neither physician nor researcher. It's taken me a while to listen to the whole podcast, but I came up with a few more gems that may interest people. Firstly, my apologies that I didn't give a time reference for all the transcribed parts. Not quite on my game these days.
Caller John caller 33:45 asking about what WPI is doing to address controversy of why 6 groups have not been able to link XMRV to ME/CFS including the CDC.
Mike Hillerby, VP WPI 34:17 Thats an excellent question and it is one that we are spending a lot of our time on. Some other groups have done some work reportedly on XMRV As your caller mentioned John, a handful of those tests have not been able to replicate the findings. Weve looked at how theyve done their tests. Again the tests are complicated, theyre very sensitive. The tests that have been published so far that have failed to replicate did not use the exact testing methods. They did not do things exactly as we described in the study. So that may be one source of the difference.
The other is the selection of the patient samples themselves. They need to come from a well-defined cohort of CFS diagnosed patients that meet certain criteria. We continue to work with researchers around the world including some at the CDC and others. We have sent several known positive samples to those labs and continue to work with those researchers. And we know new results and new studies are out there and waiting to be published and were looking forward to seeing those fairly soon.
Part of your question was about causation and we need to be careful. We dont know that yet. What we know is that in over 80% of the approximately one thousand samples weve tested of well-defined CFS patients, over 80% tested positive for XMRV. Thats a very significant finding. Again we dont know - we cant say for certain if thats causation. We dont know that that will be a definitive diagnostic tool. But any time you see numbers that large, it clearly means something important is going on.
Interviewer Just to clarify the attempts by scientists in other parts of the world to replicate your results. Their inability to do that the answer to that is that theres something wrong with their methodology.
Mike Hillerby: Potentially. We know that they didnt use the same - I want to be very careful how we describe this. We know that they did not in some of those cases use the exact testing methodology that we used. The other issue is again the selection of the patients themselves. Were they in fact using the same diagnostic criteria that we did. Was it a good patient sample group.
We are working with other researchers and in some cases some of those who have been involved in the tests that came up negative to say, We will send you genetically sequenced positive samples that we know have XMRV. Here are the instructions how to find them. Here is how you would do that. Here are the primer pairs involved. All the right pieces. What can we do to help you to do that. And thats moving forward. And were very hopeful that some positive results can be reported from those.
Caller Cassie: In the meantime, and for all the patients who wont be able to get there (WPI for Dx/Rx) what can we do with the doctors weve got to get the best possible treatment? Can we get antiretrovirals? Antivirals? Can we connect with doctors who will safely and effectively treat us in the meantime? And will the WPI be helping that process happen?
Mike Hillerby: Very much central to our mission is to get the latest information out. Again its very early. Very much central to the mission of the WPI is the idea that the latest breakthroughs, should they point to antiretrovirals again its very early, we dont recommend that, we dont know what that means. A lot of patients and physicans trying things in their practices out of really desperation, and seeing if they can get any improvement for their patients. But as we learn about diagnostics, as we learn about effective therapeutic treatments, be they ARVs or other kinds of drugs. The idea is to be able to get this information out so the standard of care becomes something that could be replicated by any physician around the country, in fact around in the world.
If you can come up with a confirmed diagnostic tool, if that can be used by licensed labs around the country and around the world, and you have some therapeutics that work based on the symptoms and the diagnosis, thats going to be a huge change. And we are very hopeful that those days are not very far off. I think we see some light at the end of the tunnel that we havent seen for a long time in this disease.
We are very hopeful that those days are not that far off. I think we see some light at the end of the tunnel
Interviewer: 49:29 So what will part of the answer be? What do you suppose might happen, say in the next year or so, that might lead to at least the next step?
Hillerby: Well, we are hopeful that more positive studies will come out that are able to replicate the findings. We are hopeful that as more researchers get involved in some very prestigious institutions, public and private universities, federal agencies who are coming and partnering with us in other things. As that gets into more diverse fields, more researchers with other experience and other backgrounds get into that, were going to begin to find answers. How is this transmitted? Is it a causative agent? Is it working with other things? Is it working in conjunction? Is it allowing another virus or retrovirus (MY NOTE: ALTER'S STUDY MAY ILLUMINATE THAT?) or something else to go on with the immune system? We would all like to hope in the next year youll see some very concrete answers and a lot more hope available with people. Again as Ive said, you have to follow the data where it leads.
I dont know that any of us thought 3 yrs ago when we were starting construction on the building that we would have moved as far as we have since the beginning of this process, with the discovery of this retrovirus again in over 80% of 1000 patient samples weve studied so far with CFS. Its a pretty astonishing number. I dont know that any of us would have envisioned we would have gotten as far as weve come. We have a long way to go. But I think youre going to see things happen much more quickly than they have in the last 20 years in this field.
Other comments by Hillerby -Another tool the viral load that can be used by physicians to guide care -Its fun seeing the patients see some hope -Official opening Aug 21. -Clinic in the very near future. Best physicans/clinicians treating/diagnosing patients, working hand in hand with researchers down the hall. -Verifiable and quality diagnostic tools.
Interviewer: Looking at the history of treating retroviruses and viruses. What will the answer look like? Will it be a vaccine? A cure? What will it be shaped like?
Hillerby on the future There is a lot that we do know about retroviruses. It could be a combination of ARVs and other immune support once people are infected. We are doing a lot of work now with the Blood Working Group and others to say, How do we protect the blood supply? We KNOW theres a retrovirus out there. We know it can be transmitted through blood. What do we do about that? We are getting a lot of attention in that realm from people saying, This probably is a serious health issue and we need to start looking at it. So there are a variety of things.
-The blood supply would be in the prevention category. -Treatment category for people already sick possibly ARVs and other therapeutics again its too early to say which ones, and how they would work -Maybe there would be a vaccine in future that would be ideal we could keep people from ever getting infected again in future. But now its just very early to tell now.dont want to set up a false sense of hope.
But weve moved further in this field in the past 3 years than I think anybody has in the past 20, and faster than even we thought was probably going to be possible. And I think that rapid pace is going to continue.
Thanks much, Creekfeet, for the "hook-up". I listened with great hope and faith that these exceptional, compassionate visionaries at the WPI will be OUR future. Soon, hopefully. And quick as I'm up again, I'll be one of the nurses there helping the many who will follow. My blood sample was found by the WPI and Dr. Judy Mikovits to be sero-positive for XMRV earlier this year. I also have high titers to all the rest of the viruses (EBV, CMV, HHV6,etc) plus Candida in my blood. A classic case for 16 tortured years, the last 10 having gotten the best of me. Now, for the first time, I see HOPE! The official opening date is Saturday, August 21 at 10am. Only wish I could be there for that moment and give Judy a way big hug. Counting on you, Cort. Love to you all. Marcie
I'm very impressed with their responsiveness. They put the podcast of the interview up within hours of being asked, and changed the title early Tues am after weekend emails... - and even sent out the below notification of the correction.
Yeah this guy kicks ass! I was googling him but nothing CFS related showed up; where did this guy get so well informed and empathic? At first I was kind of disappointed that the vice president wasnt a scientist/ md but they seemed to have made a good decision with hiring this guy.