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The Chronic Fatigue Initiative and Interview with Mady Hornig
In a follow-up article to the recent IACFS/ME conference presentation in San Francisco, and after speaking at length with Dr. Mady Hornig, 'searcher' delves deeper into the impressive work being completed by the Chronic Fatigue Initiative, and focuses in on those cytokine results ...
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April 7/8 NIH State of Knowledge Conference - watch online to show our support!

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Sasha, Apr 7, 2011.

  1. urbantravels

    urbantravels disjecta membra

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    The Lipkin study has not *started* yet. They are still waiting on IRB approval from at least two of the institutions involved, last I heard. Um, that would be in the Q&A at the NYAS talk the other week. Once it starts, it will take at least two years to complete. Probably longer, just going by the Universal Law of Everything Gets Delayed.

    The BWG, on the other hand, I believe should be delivering some results from their next phase of work pretty soon.
  2. WillowJ

    WillowJ Senior Member

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    yes, that was ben natelson
  3. ixchelkali

    ixchelkali Senior Member

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    Yes, I thought I heard Judy M. say that it would be a couple of years, and she said something about how long it would take her to run her part of the tests. I think she was saying that we shouldn't wait that long to be moving the science forward.
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    He might have a point but we cant take biopsys of the brains of us until we are 6ft under, lol. I suppose neurology is his specialty, but he needs to think lateraly, u think that would be easy being a neurologist, lol.
  5. Sing

    Sing Senior Member

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    urbantravels, It sounds as though Natelson went too far then. The "room" was experienced as a competitive environment more than a collaborative one by some, including him then, who overstated their cases. I don't think this means he or Mikovits or others who did this didn't have good points to make, but overstating your case isn't the most helpful for science!
  6. Rrrr

    Rrrr Senior Member

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    she said clinical trials should not be delayed. that they need to start now.
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    she mentioned immune modulators, mm ampligen??? 25% discount for pheonix rising members
  8. WillowJ

    WillowJ Senior Member

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    yes, I thought that was a really important point

    the other thing I thought was great was that the big debates of this event were not science versus psychobabbling, but whether ME/CFS:

    is associated with (a) XMRV or (b) some other infectious agent, possibly a different gamma retrovirus

    and

    whether it is (a) among other things an immune disease or (b) primarily a neurological disease
  9. Sean

    Sean Senior Member

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    I agree with this.
  10. Rrrr

    Rrrr Senior Member

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    tuller from the new york times was there. expect a story from him tomorrow?
  11. ixchelkali

    ixchelkali Senior Member

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    Good point. There really were a number of things to feel hopeful about. Heck, even the name of the conference. The NIH called it myalgic encephalomyelitis/chronic fatigue syndrome! A breakthrough.

    Now if we could just get the CDC to emerge from the paleolithic era...
  12. Rrrr

    Rrrr Senior Member

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    speaking of the cdc, monroe was there. ha! playing catch up.

    also, speaking of judy's anger: don't forget that it was coffin's leadership at the boston retrovirology conference a few weeks ago that was a key reason judy and other "xmrv positive" researchers were not invited to present their side (at that conference). he played a big role in controlling the agenda of the xmrv discussions and the speakers allowed to present at that important, international meeting. she and ruscetti and others on her side (scientifically and politically speaking) were not invited to present. they were, in fact, turned down.

    in other words, her anger is not out of the blue. there is a context for it.
  13. urbantravels

    urbantravels disjecta membra

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    Tuller's actually a stringer, he's not an NYT staff writer. So his pieces don't appear with great regularity.

    I would hope that he will be allowed the opportunity to do a big article about the conference, which would mean both a longer lead time and probably specific placement (say, in the Tuesday science section.) Nothing "breaking" was discussed at the SoK as far as I can tell, so there's not much reason to do a quick turnaround article.

    As for Amy Dockser Marcus, she did a quick blog hit about the Mikovits/Coffin smackdown yesterday, but I also *hope* she'll have a longer piece appearing in the WSJ about the conference. It seems they've been running her other long pieces on Saturdays, but who knows.
  14. dannybex

    dannybex Senior Member

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  15. ixchelkali

    ixchelkali Senior Member

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    Oh, good. He wrote a good piece on the PACE trial study, and the need for a good case definition.
  16. richvank

    richvank Senior Member

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    Comments on the NIH workshop April 7-8, 2011

    Hi, all.

    I was one of the regular posters on this forum who was able to attend the workshop. I gather that many of you were able to follow the action via the web, so you know how the talks and the discussions went. I'll just give some impressions.

    First, I would say that there were about 100 people total in the main conference room. I didn't check how many were in the two smaller rooms. The NIH staff people were very pleasant and helpful.

    The schedule was pretty full with quite a few relatively short talks, and not a lot of breaks. I think the idea was to be able to hear from as many people as they could fit in, and to cover the main "knowledge" areas, involving people from NIH as well as the main ME/CFS researchers and other major stakeholders, including PWMEs/PWCs.

    In order to promote new intramural (inside) research on ME/CFS within the NIH institutes, it is necessary that individual NIH researchers become interested in studying this disorder. So one goal of the workshop is to expose some of them to research on this disorder.

    Another goal is to try to promote more extramural (outside) research. This requires having money available, of course, but also encouraging researchers to put in the work required to submit good grant applications, because they have to compete with grant applications for research on a large number of other diseases and subject areas. It's kind of a chicken-and-egg problem. Unless researchers believe there is a good chance to get funded, they won't put in the effort needed to get a grant application together, which is substantial, and which they often aren't paid to do, so they have to fit it in. And, of course, unless good proposals come in, not much ME/CFS research will get funded, which then discourages more applications, etc. So this spiral has to be broken. Another tough problem.

    At the workshop, they tried to have time for discussion, but quite a few speakers used up their discussion time because they had more to say than would fit into their time slots. This is typical of scientific conferences, in my experience.

    I think the mood was generally pretty upbeat, though you are aware that there were some contentious discussions, and there were also some pretty heavy and heartfelt talks.

    My impression was that the NIH people as well as the "outside" attendees were all motivated to try to accomplish something constructive. Of course, one must always keep in mind that we are all very human, and that while everyone may share a common goal, it is still true that "where you stand depends on where you sit."
    Another apt old saying is that "honest people can have honest differences of opinion."
    O.K., Rich, so much for the cliche's!

    I got the feeling that the chain of command in HHS and NIH have gotten the message that ME/CFS needs more attention, and that they are inclined to give it more. At the same time, they can see that the Congress is moving in the direction of tightening up the pursestrings, and they don't know how much wiggle room they will have, so they aren't making any commitments.

    It's pretty clear that we can't expect the NIH to re-establish so-called centers of excellence at universities or med schools, as existed a few years back. The view among the management there is that these were very expensive and didn't produce a lot of worthwhile results.

    They want the various researchers to communicate and collaborate across the institutions involved, so that they can take advantage of all their expertise. This will be challenging, in my opinion, because the various researchers will have to submit independent grant applications, presumably in competition with each other. Given that, it's not easy to develop collaboration and cooperation. It's a tough problem, especially when there isn't a lot of money, and it's a zero sum game. I do think there was a lot of value in bringing the people together, though, because the better they know each other, the easier it will be for them to communicate.

    As far as the technical aspects of the workshop were concerned, I think it did a pretty good job of covering what is thought to be the general "state of knowledge" concerning ME/CFS, except for one area, which happens to be one I think is pretty central to the pathophysiology of ME/CFS, and that is the metabolism, and particularly the energy metabolism, and (you guessed it!) good old methylation! I think I will write to Dr. Mangan about that, because I think an incorrect perception was conveyed that everything is fine with the basic metabolism, and that is really not so.

    Oxidative stress wasn't really mentioned, as far as I can recall, and there wasn't a discussion of mitochondrial dysfunction. I would have loved to have raised these points, but as you probably noted, the audience in general was not given the opportunity to comment, and none of the "experts" who had seats at the conference table brought them up. This was not too surprising, because these have not been major research themes among the U.S. researchers.

    Methylation was mentioned a few times in the context of gene expression, but not in the sense of a methylation deficit. In fairness, there are no peer-reviewed publications on the methylation deficit in ME/CFS, so anyone who is just reviewing the published literature is not going to find it. There is a lot in the literature about oxidative stress, though, and some about mitochondrial problems.

    The other thing that was missing, in my opinion, and has been absent in ME/CFS conferences in the past, is an effort to pull all the pieces together into a coherent model for the pathogenesis and pathophysiology (that is, how the disease gets going, and what the ongoing disease process is). What we have is specialists in various aspects all minutely examining their piece of the elephant, with nobody stepping back to try to visualize the whole animal! Until that is done, I think progress will be slow.

    I can understand why this isn't done. Everyone is much more comfortable staying inside their "boxes" than stepping out and talking about things about which they are not expert, risking that someone else will shoot them down. Also, I don't think many people are "generalists," with a broad enough scope in their understanding to be be able to see the connections between things well enough to figure out how the pieces of the puzzle fit together. I think the person who is closest to doing this (beside myself, of course! :D is Gordon Broderick, and I had a good talk with him and encouraged him in what he is doing. By the way, he has an engineering background, too!

    With regard to the burning issue of XMRV, I guess you saw and heard the dialog. Harvey Alter did a wonderful job of summarizing the issues today, I think. It does sound as though the "round robin" comparisons of measurements on aliquots of the same blood samples that are planned are being carefully thought out and executed, and hopefully they will settle the issue. Unfortunately, this will take quite a bit of time to accomplish, but there appears to be no other way in which this can be done.
    I know that this long time requirement is not happy news for PWME's/PWC's, especially those who know they are XMRV-positive.

    I met Elizabeth Unger, and you know what? She's really not an ogre!

    John Coffin didn't seem like one to me, either. I think he was coming from the point of view that XMRV couldn't be causal for ME/CFS if it developed from two other viruses coming together at a time later than when ME/CFS was first known to appear, and he had reasons to believe that this did happen at a later time. However, it seems to me that XMRV could still be associated with ME/CFS cases after it developed, and could be a contributing cause after that time, even if it were not present in earlier cases.

    As you may know, my hypothesis is that several types of stressors, including viruses and retroviruses, but also other biological stressors as well as physical, chemical, and psychological/emotional stressors can be involved in producing the onset of ME/CFS, so this would fit into my hypothesis very well. XMRV does not have to be the exclusive cause of ME/CFS, but could be a current contributor.

    I had the chance to talk to quite a few other people there, including people we know and love from this forum (which was a lot of fun), and of course, passed out my propaganda, as I usually do. I brought 100 copies of the slides from my talk at the Yasko Protocol Conference in Boston last summer, and most of them were picked up by people at the workshop.

    All in all, I think it was a worthwhile experience, and I'm glad I came. It remains to be seen what the results will be over time.

    Best regards,

    Rich
  17. Boule de feu

    Boule de feu Senior Member

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    Thank you for this, Rich.
  18. Rrrr

    Rrrr Senior Member

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    THANK YOU, rich, for this overview. and for all your work on our behalf over the years. you are an important person in our community, and have made so many contributions to our understanding of our illness.

    very helpful to get your perspective from inside the conference walls. would love even more from others, too. did our noted bloggers manage to make it? the patient advocate? mindy? hillary? heidi?

    can you be sure to send this write up to Dr. Bell? he gives a public talk on april 16, in Boston, http://www.masscfids.org/news-a-events/288

    and it would be good for Bell to see this write up before then. he is another generalist, isn't he? but also working on an xmrv research project right now (funded by the nih).
  19. ukxmrv

    ukxmrv Senior Member

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    Thanks Heapsreal,

    I want to be represented by Dr Mikovits. I want someone to be angry on my behalf and show how serious it is. I want doctors to get angry over this and fight for us (like they did over the early days of AIDS). We need more of them.

    This is something worthwhile getting angry about. If similar professionals were at a conference on Genocide or a war, then they would be angry.

    Dr Mikovits doesn't come across as a hysterical woman unless you want to view her as one. She comes across as a strong, passionate and scientific woman.

    Who else, apart from patients, actually addressed the urgency of the science. Who told it like it was and exposed the hypocrisy of XMRV lack of treatments compared to HTLV and HIV. Who said that patients should not have to wait for 3 years.

    Compare to Coffin and his whining and his raised angry voice and the way he just spoke over everyone and got louder and louder. There was an angry man and why can't he be "hysterical" instead. The difference is that Coffin was angry about and for himself - he doesn't care about patients. There was nothing in his speech and there is nothing in his work to help us in any way. Exactly what has he done for us and exactly what will he be doing in the future - nothing.

    Who wants to defend Natalson and his "XMRV" testing? why not speak out. Silence is the wrong thing to do here.

    Dr Mikovits did a great job. She's allowed to be impassioned and angry. These emotions are appropriate for the situation and I only hope that I would have half her courage in the same circumstances.

    If you read "and the Band plays on" you will find lots of emotion expressed at conferences and meetings by doctors. Mainly male doctors and no one remembers them as being hysterical or judges that their emotions were inappropriate and ill expressed.
  20. Boule de feu

    Boule de feu Senior Member

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    If I had to choose one side (not that I will):

    Coffin - ignoring some of Judy's questions, not able to answer

    Judy - shaking her head, showing what Coffin says does not make sense

    Do I need to say more. I think it speaks for itself.

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