Tuesday, September 7, 2010

XMRV Conference, Day 1



Head of the NIH Dr. Francis Collins opened the conference with a cautiously optimistic talk.  His take on XMRV and related MLVs combined "some skepticism" (largely due to the negative XMRV studies) with "enormous medical importance," if the positive papers win out.  As for the FDA/NIH/Harvard paper, Collins said that "differences might matter," referring to that study's findings of four XMRV-related MLVs in CFS patients and controls versus Dr. Judy Mikovits's XMRV finding.  Most importantly, he said a NIAID "multi-center study" on XMRV and related MLVs will be done and that he and NIAID Director Tony Fauci had discussed it.  Collins closed by saying it was a "very exciting time" and expected "great things" to come out of the discovery. 

Some of the information at today's conference was material from papers already published, and some came from papers not yet published that the researchers don't want out until they are published.  Frustrating to say the least--but none of today's findings were revelatory.  But tomorrow is another day.   I'll know more about what I can and can't report tomorrow. 

Dr. Ila Singh told me that she'll submit her autopsy study in a couple of months, and will submit her CFS study probably by the end of the year.  She wouldn't say what her findings are, but she has a very lovely smile.   

Dr. John Coffin was marvelous, talking a mile a minute--so fast that after a while you realize there's no way you'll ever be able to write as fast as he can speak. 

I chatted briefly with longtime CFS and HIV physician Dr. Nancy Klimas, who gave a word of caution about CFS patients using antiretrovirals, as they're known to mess with the cells' mitochondria. 

One light moment that had most everyone laughing came when one of the presenters, Dr. Ikeda, calmly bemoaned that the mice he used in his experiments were very aggressive, lightning quick, with the troublesome signature of "pretending to be dead when handled."

More to come.

39 comments:

  1. Go Mindy!!! If you see Nancy Klimas tomorrow, tell her that Kati in Vancouver says hi!!!

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  2. I believe that CFS has already messed pretty badly with my cells' mitochondria.

    Maybe I should get prostate cancer as a quicker route to proper drug treatments?

    michael

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  3. Thanks, Mindy, for giving us an early update.

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  4. I was under the impression that the video from this whole conference will be posted online in a few weeks. Then the data from the unpublished papers will become public so why can it not be reported now?

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  5. Thank you for being eyes and ears to those of us who cannot travel.

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  6. I am so proud of everyone who has help us to at least get this far!

    I sure hope that we take the cue and start to hit back with this evidence there is no reason why millions of people have to suffer and have a horrible quality of life!

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  7. The mention of "differences might matter" has such an ominous tone to it. Exactly what is he talking about?

    His "differences" or mine?

    Chris

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  8. We could get HIV, then get treated. I've heard it often said that PwCFS have a lower quality of life than PwAIDs or persons undergoing chemotherapy

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  9. thank you. I slept through most of the day. Nice to know I didn't miss anything!

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  10. I'll have to miss tomorrow's webcast, so I look forward to reading the summary here. Thanks!

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  11. Thanks Mindy

    This really made me LOL..

    Dr. Ikeda, calmly bemoaned that the mice he used in his experiments were very aggressive, lightning quick, with the troublesome signature of "pretending to be dead when handled."

    I do a pretty good impression of dead too. :)

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  12. Many thanks for the update Mindy!

    >Dr. John Coffin was marvelous, talking a mile a >minute--so fast that after a while you realize >there's no way you'll ever be able to write as >fast as he can speak.

    Don't I know it! I transcribed his CFSAC talk last year. The guy has sentences within sentences, and thoughts within thoughts. And I had the pause button on my side!

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  13. Thank you for taking the time and interest in this topic to go to the Conference Mindy and for making the effort to post your blog for us after the first day! Just imagining the networking opportunities at this kind of event in the evenings!

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  14. Thanks Mindi, keep the news coming, we are all ears and eyes !
    Aruschima

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  15. [QUOTE]One light moment that had most everyone laughing came when one of the presenters, Dr. Ikeda, calmly bemoaned that the mice he used in his experiments were very aggressive, lightning quick, with the troublesome signature of "pretending to be dead when handled."[/QUOTE]
    That's just how I am in the morning.

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  16. Thank you for a great update - again!

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  17. Thank you Mindy for going and taking notes for us all.

    Well it seems that it is still "business as usual" with NIH. Collins being there meant nothing as I had already assumed. When they start talking real money and money leaving DHHS/NIH for private research/clinical trials and for large-scale Federal research (NOT involving the CDC), then I will have some faith in these people. But, not until then.
    Let's see what Wed brings, but I expect much the same thing. This was a "show" put on for the sick and we are not stupid. Get us funding for real research and clinical trials NOW or it's just a waste of everyone's time.
    Again - Thank you for being there for all of us.

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  18. in respose to luke's comment.

    Maybe they will cut any unpublished study parts out of any video they make public? That could be the reason why its going to take a few weeks before its put online.

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  19. Thank you so much!!

    Is it true Kenny de Meirleir will also speak on this congres?

    grtz,

    Jeroen

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  20. wow, go Mindy!

    you are a goddess!

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  21. Hello Mindy!

    I just saw you on the Web Cast.
    Thank you for what you said!

    I know Prof. dr. med. Kenny De Meirleir from Belgia. I saw him on the WebCast too,I hope you talk to him, he is a very clever sientist, and he is on the ME/CFS-patients side.

    I use to read your blog.

    Kind regards,
    Sun

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  22. thanks for your questions in the q&A session!
    a shame that they just squashed them off ("we are not going to talk about cdc here")

    look forward to your blog on 2nd day!

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  23. Good job, Mindy, at the Q and A!

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  24. Mindy,

    I couldn't wait for your day 2 summary to say...

    YOU ROCKed

    Thank you, as always - Otis

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  25. Mindy many of us M.E/CFS sufferers watched the live conference that was shown on the web. There are many of us that are a closely bonded group on facebook & we share all our research news & information as well as offering each another support. We all regularly share your posts & we all were so thrilled with your questions at the conference. You asked the questions we all wanted answered & your points about the CDC testing depressed patients were fantastic! We are so grateful to have you asking these questions & reporting the facts. You are very much appreciated & loved by us all! thank you so much!

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  26. Mindy,
    Have just discovered you-thanks for looking after all of our desires for information! I'll hope for something more explosive on the 2nd day? For the time being I still have memories of when B-days were fun! Anyone checking the federal register lately for HHS-SAIC Post for the XMRV "toolkit". Puzzling-please have someone "in the know" interpret this tidbit in an upcoming blog! Me-ouch!

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  27. The Q&A video is up..

    http://www.youtube.com/view_play_list?p=C48EFC7D6D7F217A

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  28. Mindy,

    I have also been waiting for your summary of day two to say that I was very pleased with your comments to the panel.

    You cannot separate politics from funding and funding from the science that is supported. Politics have been inextricably woven into the mess that is 'CFS,' especially as defined by the CDC.

    The cohort issue, where no distinction between depression and neuro immune disease, does not account for the dramatic differences between the zero/zero studies that the 70+/5 studies but it has everything to do with the perceived severity of the disease and that will drive the issue of urgency (or lack there of) surrounding clinical trials and funding.

    My comment to Dr. Coffin would be that I agree with his conclusion that patients who undertake trials of anti-retroviral medications independent of organized investigations will offer little more than anecdotal accounts of efficacy or lack there of (and in doing so may actually add to the confusion, especially in light of the chaos in some corners regarding diagnosis).

    That said, I would hope that Dr. Coffin would appreciate that patients who do undertake these treatments are generally not doing so out of a desire to move the science forward.

    A small minority of patients are making the decision to move forward with experimental and potentially dangerous treatments with some understanding of the real risks because presently there are so few other treatment options available. These are seriously ill patients whose quality of life is limited to confines of their bedroom walls and I suspect that a much larger group of patients are too sick (and presently invisible) to even muster the energy to try to obtain anti-retroviral medication still more are showing an amazing amount of constraint and patience given the severity of their illness.

    The absence of real treatments for ME is not a coincidence. We are where we are because of a deliberate effort to confound the definition of CFS and a willful ignorance surrounding ME/CCDx CFS.

    And yes, there are agencies in the US and other governments with something to lose (their credibility and a flawed world view) if this avenue of research illuminates the real magnitude of this illness.

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  29. Thank you so much for all the wonderful work you're doing, Mindy.

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  30. I am anxious to hear about day 2. Please describe what the tone of the researchers presentations and Q&A were like. From the public Q&A it seemed at times almost combative.

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  31. Mindy,
    Are you OK? If the second day summary takes a while, that's perfectly fine, but I'm a little worried you might be despairing after the callous dismissal some of your questions got. We still love you!

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  32. Mindy - you're a hero!

    Thank you so much for speaking out about the CDC. These things need to be said and put on the record.

    Great stuff!!

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  33. Joe Landson, I'm fine. I'm not much for despair, I'm more "the road to yes is a series of no's" kind of person. This post is taking longer to do, because I took notes instead of taking my laptop and because of the amount of technical information there is to decipher.

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  34. mindy please read this

    http://treatingxmrv.blogspot.com/2010/09/6-months.html

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  35. Amazing that some of these guys can talk like it's something new that we have a selection/diagnostic criteria problem that needs corrected before we can talk clinical trials. Well Duh! Of course that's necessary, but it's not a new problem that needs 2 more decades of political BS. It's political BS that started and continues to perpetrate the problem. The solution is to pick up the already existing diagnostic information created by the truly qualified ME/CFS doctors, and disqualify all the misleading CFS crap from the CDC.

    Thank God for those who continue to fight for us. We'd be sunk without people like you Mindy. Big time hugsss!

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  36. We do know that our cell mitochondria is hosed, shot, dysfunctional etc. But, imho, that's exactly the reason why AVR's should be given a chance... they can possibly fix it. It could be that we are at risk initially when starting a trial, but if it can fix the reason it's screwed up in the first place, by all means, lemme try the AVR's.

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