The XMRV conference at the National Institutes of Health (NIH) in Bethesda, Maryland, is days away.
Most of you are familiar with the lineup of speakers by now, including Drs. Judy Mikovits, Shyh-Ching Lo, Frank Ruscetti, Eric Klein, Robert Silverman, John Coffin, Sam Chow, Ila Singh, Kate Bishop, Brigitte Huber and Bill Switzer.
Getting up to speed on the rules and regs at the NIH, I learned from the agency's website that conference attendees are forbidden to bring explosives, open containers of alcohol and archery equipment. Supply your own joke here.
Getting up to speed on the rules and regs at the NIH, I learned from the agency's website that conference attendees are forbidden to bring explosives, open containers of alcohol and archery equipment. Supply your own joke here.
I look forward to reporting what I learn.
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Mindy, will be watching your blog real close. Looking forward to it!
ReplyDeleteAs for explosives, I really really hope there will be explosive comments towards the decade long doubters that CFS is a mental illness.
They can't hide anymore.
Mindy -- How about a syringe of blood from the sickest CFS patient you can find? And, of course, the purpose would be to help some of them share the subjective experience of CFS, which would advance the science, I'd think.
ReplyDeletemichael
NIH director Francis Collins is now listed on the program as opening the conference (1 pm Tues). Perhaps you can get an interview??
ReplyDeleteWell it looks to me like the honored official institutions have very quietly shifted places. The mental illness stuff will disappear from the corporate memory very quickly. ("Who said 'mental illness'? Not us surely").
ReplyDeleteWhere explosives are yet to detonate is the UK. I don't know that the "personalities" there will be able to do anything quietly.
Explosives, alcohol, and archery equipment. They sound like they've had an interesting history over there.
ReplyDeleteHave fun.
If I read correctly, there is a loophole for CLOSED containers of alcohol, which would presumably explode under heat or pressure -- such as a blast of hot air from Atlanta, or the fixed glares of millions of patients staring intently at the NIH campus...
ReplyDeleteYou know, there has always been a major problem with archery equipment on the NIH campus. They really watch for those bows and arrows. But you can bring a knife or gun with you! (JOKING)
ReplyDeleteOur Federal government at work. God help us all.
Thanks for going and reporting on this. You are one of the finest writers out there and we ALL value your insights and reporting.
Be safe. Rest. Watch out for flying arrows!!
Thank you Mindy, for getting there and reporting for all the people that are to poorly to attend! x
ReplyDeleteAh, dang! I was hoping for a LOT of explosive news! Somehow I still think we will get it.
ReplyDeleteSorry you're not allowed to bring your archery equipment. I mean, isn't that what every good scientist or journalist brings? How else do they decide who is right or wrong?
Ah, the good old days when things were so simple...
Looking forward to hear your valued take on the workshop soon!
Mindy- I've heard some news that the head of NIH has been added as the keynote speaker for the conference. If this is true it implies that the government is now looking at this conference as of major importance to medical policy. Is this acurate, and what is your take on this?
ReplyDeleteHow about a boomerang for Bill S.? Just kidding! Maybe he is about to see the light and get his ass-say right.
ReplyDeleteThanks Mindy. Thousands of us will be waiting to hear from you. Maybe hundreds of thousands of us.
This may be the turning point for a dramatic shift away from widespread misconceptions of CFS. The pendulum may swing a bit far the other way as people realize the magnitude of this public health threat. I'm all for shock reality in this situation...bring it on. It's way overdo.
ReplyDeleteI'm really curious about Dr Kenny's findings, Dr Judy's good news, and more. It's gonna be good. Thanks for front line reporting Mindy.
Haha, lolling over here at Mr Landson's cracks.
ReplyDelete> Ah, the good old days when things were so simple...
It's a good thing CFS patients don't have to hold an ingot of hot iron for as long as possible in order to demonstrate divine favor. Due to substance P and 'central sensitization' (that is, CNS pain sensitization), we would perform poorly.
Well I'm totally glad you are going, Mindy. I hope it will have much more new information on our little saga than the Oracle of Gaithersburg (AKA Blood Group) had, and surely it will. After about 30 minutes I was kind of tuning out the speakers and craning my neck trying to spot celebrity Copernicans and Baconists across the room, and also now and then taking a glance at cute grad students and post-docs - but certainly not, of course, for all that much longer than our mores permit. Had the organizers known of my marginal repute, they certainly would not have admitted me to the upstanding meeting - but with you, Madam, owing to a more successful moral education, the case is just the opposite.
Well, whatever side may be right about these MLV thingies, may Heaven guide our scientists aright in their confusing and lightly-politicized, yet still quite remarkably disciplined inquiries - and may It also accommodate all the light heresies from the Earthly centuries of heliocentrists and their progeny; after all, they may actually be just slightly better at science than the all-but-All-Sufficient is himself - each must have his metier, and there is a place for the humble special aptitudes of man, even though our indispensable science jocks, with all their tubes of amazing chemicals, could certainly not have breathed light into a world, or ever set its nights revolving.
Mindy,
ReplyDeleteWith Dr. Francis Collins, the current Head of the NIH opening the XMRV conference.....we have come a long way Baby!
Folks, check out his listing at Wikipedia
http://en.wikipedia.org/wiki/Francis_Collins_(geneticist)
He is a very bright and engaging guy. We REALLy need to thank The Whittemores and Dr. Judy Mikovits and Dr. Dan Peterson among others.
When i first collapsed back in 1987, I had to return to my family home, because i was SOO sick that i couldn't swallow solid food. My father was
a top lobbyist in D.C. and he had connections that knew the top people at NIH. these folks asked Dr. Stephen Strauss to call me personally and see if he could be of help...He was SOOO dismissive, arrogant and rude, i couldn't believe it. He said that CEBV didn't exist and that he was studying REAL diseases like HIV!. Ignorance ain't bliss. 23 years later, the head of a $32 Billion per year agency is actually speaking at the opening of a conference on XMRV and related viruses that could be triggers for these brutal conditons. Make sure that you ask him about his motorcycle, his guitar playing with his favoritie band..and also ask him about his strong Christian Faith and what should happen to people in Power who look down upon and mock the sick among us!
Who will be asking the Questions? Only the scientists, or reporters like you, Mindy?
ReplyDeleteWill there be any patients there?
SHOULD we sling past history, muddy the waters, so to speak? Would it help or hinder our cause?
Great comments here re weapons of mass destruction, make me laugh and weep; however, maybe we should hold our fire until we know what they are saying...
There is always the famous shoe lob. Make sure you are wearing doc martins Mindy
ReplyDeleteI dont think any of the Uk psychiatrists have been invited....no need to take a bow and arrow then!
ReplyDeleteI'm surprised to see Stephen Goff's group NOT giving an address. They must be in publication mode. They'll be present, I bet.
ReplyDeleteI wanted to hear his take on XMRV together with MLV (poly). He's an expert on MLVs, too.
Actually, I think everybody that's measured XMRV should be re-testing their samples for MLV. It would be interesting to see if MLVs are missing in prostate cancer.
Mindy, it would be great if you could post a few observations about the presentations throughout the day (Sept. 7 and 8). I know that it is probably difficult under the circumstances, but I am so on pins and needles to hear *anything* about the conference. My anxiety level is high to say the least.
ReplyDeleteThank you for attending the conference.
Please include discussion of recent comments by McLure and Hyde in your report in view of presentations at the conference. I would like their disbelief in XMRV/MLV's in CFS, or the relatedness of CFS and ME put into context.
ReplyDeleteThanks for your excellent and trustworthy reporting!
Thank you Mindy!! Come on folks, lets donate a few dollars to our fearless reporter!
ReplyDeleteDear Mindy,
ReplyDeleteThank-you for all the good work you have done. I'm sorry I have not been able to donate, beyond reading these blogs and clicking on the ads. For those who have--thank-you as well.
I would request that you may ask two questions if you get a chance to meet with a high up in the NIH/CDC/Feds.
The first question is the monetary "why":
Why ... with an illness that affects somewhere between half a million persons and a few times that in the U.S. alone, why has there been a shoe-string budget? For an illness that is as debilitating as heart failure, or end stage MS, and that disables and in rare cases kills? Why has no good research come out of the government labs?
Why is the definition the CDC uses so flimsy at picking out patients from fatigued controls (as per Dr. Leonard Jason's research)? Why have "biomarkers" like spect scans, left ventricular filling issues, NK cell reduced cytotoxicity, etc. been ignored instead of being used to, at the very least, further homogenize the patient population?
I assume the answer will be something that will allow you this or a similar follow up question, though you will probably think of something better:
Following up, secondly:
If they say "well, it's not that simple. First you need to do epidemiological research and other basic research such as biomarkers and delineating stages of illness before proceeding --throwing money at the problem won't do anything if that is not done."
Then please ask: Why after twenty-five years, since Incline Village, and this illness was known definitively as a national issue --why hasn't this been done already?
...Supposing the federal agencies (NIH, CDC) thought the task too difficult, why have they turned down people like Prof. Seymour Grufferman, University of Pittsburgh, and many others? Researchers who wanted to study bone fide outbreaks and whose work would have had a beneficial effect beyond imagining -- if it had only been done.
Why, In twenty-five years, has so little epidemiological and biomarker research been done by the feds? Why was Walter Gunn (CDC) ignored and eventually literally "locked out" when he kept insisting this was a serious illness and national health issue?
Why has the CDC never just said that what they "studied" in Incline was the same as "Myalgic Encephalomylitis", instead creating a newer and vaguer category--that of "Chronic Fatigue Syndrome"? And why are they continuing in this approach despite the fact that it is universally acknowledged by experts in the field (Peterson, Klimas, Hyde, Ramsay, the list goes on) that they were the same illness?
So if they say, "well you can't just throw money at the problem" before the basic research then pray tell: why has this basic research that is so fundamental that even most non-biomedical people could do it (if they had sufficient background and equipment), never been done? Or done in the most haphazard manner (such as the Wichita Phone Surveys?) that is not duplicable?
My own comment: it is not without reason that Hillary Johnson has compared this to the Tuskegee Scandal ...
Also I hope we are able to get a concrete plan of action for this XMRV/MLV-RV finding out of this finding, that will free up money and includes potential clinical trials, better and widely available assays, centers of excellence, research into XMRV/MLV-RV pathology and transmission in humans, and collaboration with the WPI and outside institutions like the Cleveland Clinic, Cheney's Clinic, etc.
In any case, I would think this conference could be Disneyland for a journalist: best of fortune in your endeavors. =)