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From the 1st annual XMRV conference
- Thread starter George
- Start date
Thanks for explaining that Deatheye - and welcome to the forums! - I didn't understand why that tangent was brought up right at the end but that makes it clear. I remember the very short answer to "does anyone know why?" "No.". Interesting that this discussion was cut short by Stoye who then ended the session earlier than advertised...
Martlet
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I think you wrote a great post, Mark, but I'll have to print it out to read later. Going down with something 'orrible - I mean something else 'orrible. Throat, headache, can't concentrate worth a darn... See you on't'other side of it.
The Missing Peace
Perhaps the problem that Coffin is emphasising boils down to the often ignored fact that there is not an unlimited pot of money; every choice we make affects everyone else, it takes money away that could be used for other things.
I have thought about a similar problem from another angle, perhaps also a religiously-based line of thinking, with the idea of sacrifice. Just as we sacrifice animals for our research, and indeed experimental patients may sacrifice themselves by taking huge risks as was described in the early history of haemophiliac AIDS patients who died (indeed we are all guinea pigs making sacrifices for new science and many people in the world, such as the victims of incidents like Bhopal, are even quietly sacrificed for the benefit of science and technology)....in that context I have pondered the situation that if one person were in a situation where their own conscious self-sacrifice might save the greater mass of humanity, where would that leave us? What would you do?
I think it sounds like the same moral dilemma viewed from the other side, and I don't know why it has been coming up in my mind so much lately, but it feels like it might be somehow relevant to this whole situation. It's a horrible question, either way. I can't answer it. I don't want it to be posed. But all it makes me think in this context is that one should somehow hold on, and hold on, until the last possible moment, before making decisions like these, in the hope that the dilemma can be avoided.
I am surprised by people's reaction to Stoye's chairmanship. The terms of reference are frustrating, and the fact that he was there to hold a line against the political questions is...more than annoying...but I found him firm, clear, unambiguous in holding that line. Perhaps the interpretation of rudeness is partly cultural - as a fellow englishman his approach didn't strike me as any ruder (within the terms of reference) than those who put him in that position by breaking the rules and bringing politics into the discussion. I can totally understand his perspective and I don't think there's any other way he could have behaved - but at the same time, that very approach is what causes all the problems because we are not allowed to discuss the elephant in the room. As a moderator, I can well relate to the impossibility of his position as chair: there's ultimately no polite way to make somebody shut up! But as soon as I saw from the beginning that he was moderating, my heart sank a little, because I knew what it would mean. Yet it had to be done, we would have had nothing but chaos otherwise, and at least this way we had chinks of light shining through the screens - most notably from the heroic Mindy Kitei.
The most illuminating part of all, however, may have been the exchange right at the end, the chatter that many of us picked up on: thanks to the extra snippet you overheard I think we may now have enough fragments to piece the whole exchange together...
- "I'm literally more confused than I came"
- "well, for me it's much clearer now"
- (presumably) "well you must know something I haven't heard then"
- "I DO know things you haven't heard"
- "WE DON'T KNOW!!!"
To me, this seems as though it may encapsulate the entire argument.
If the argument is between one group of people who know a load of stuff that they ain't telling, the newest discoveries that make sense of the mysteries...and another group of people - sceptics, scientists, who need to go by the evidence they see, and not on blind faith - then it makes perfect sense of the frustrations.
And I must say as I always do that I am very unhappy about this aspect of science whereby vital information that could be of immense benefit to humanity is kept in the dark, causing chaos and confusion to everyone...and why is this information under wraps? Well the answers, as always, boil down, however you slice them, to money. And that gives me cause for some very great concerns indeed...so now there's another elephant in the room for you folks...
Very thought-provoking post omerbasket, and a passionate case you made about the importance and value of saving a single human life, I believe myself that all life is sacred so I feel that strongly. I really get the idea that you "save the world" for that person. Yet I can also see why Coffin says "less than zero value to science" as well, because you may be spending money that could otherwise be spent in a way that benefits humanity in general, you may slow down scientific progress if you push too hard, you may risk some effect that can stall the whole field completely.
Perhaps the problem that Coffin is emphasising boils down to the often ignored fact that there is not an unlimited pot of money; every choice we make affects everyone else, it takes money away that could be used for other things.
I have thought about a similar problem from another angle, perhaps also a religiously-based line of thinking, with the idea of sacrifice. Just as we sacrifice animals for our research, and indeed experimental patients may sacrifice themselves by taking huge risks as was described in the early history of haemophiliac AIDS patients who died (indeed we are all guinea pigs making sacrifices for new science and many people in the world, such as the victims of incidents like Bhopal, are even quietly sacrificed for the benefit of science and technology)....in that context I have pondered the situation that if one person were in a situation where their own conscious self-sacrifice might save the greater mass of humanity, where would that leave us? What would you do?
I think it sounds like the same moral dilemma viewed from the other side, and I don't know why it has been coming up in my mind so much lately, but it feels like it might be somehow relevant to this whole situation. It's a horrible question, either way. I can't answer it. I don't want it to be posed. But all it makes me think in this context is that one should somehow hold on, and hold on, until the last possible moment, before making decisions like these, in the hope that the dilemma can be avoided.
I am surprised by people's reaction to Stoye's chairmanship. The terms of reference are frustrating, and the fact that he was there to hold a line against the political questions is...more than annoying...but I found him firm, clear, unambiguous in holding that line. Perhaps the interpretation of rudeness is partly cultural - as a fellow englishman his approach didn't strike me as any ruder (within the terms of reference) than those who put him in that position by breaking the rules and bringing politics into the discussion. I can totally understand his perspective and I don't think there's any other way he could have behaved - but at the same time, that very approach is what causes all the problems because we are not allowed to discuss the elephant in the room. As a moderator, I can well relate to the impossibility of his position as chair: there's ultimately no polite way to make somebody shut up! But as soon as I saw from the beginning that he was moderating, my heart sank a little, because I knew what it would mean. Yet it had to be done, we would have had nothing but chaos otherwise, and at least this way we had chinks of light shining through the screens - most notably from the heroic Mindy Kitei.
The most illuminating part of all, however, may have been the exchange right at the end, the chatter that many of us picked up on: thanks to the extra snippet you overheard I think we may now have enough fragments to piece the whole exchange together...
- "I'm literally more confused than I came"
- "well, for me it's much clearer now"
- (presumably) "well you must know something I haven't heard then"
- "I DO know things you haven't heard"
- "WE DON'T KNOW!!!"
To me, this seems as though it may encapsulate the entire argument.
If the argument is between one group of people who know a load of stuff that they ain't telling, the newest discoveries that make sense of the mysteries...and another group of people - sceptics, scientists, who need to go by the evidence they see, and not on blind faith - then it makes perfect sense of the frustrations.
And I must say as I always do that I am very unhappy about this aspect of science whereby vital information that could be of immense benefit to humanity is kept in the dark, causing chaos and confusion to everyone...and why is this information under wraps? Well the answers, as always, boil down, however you slice them, to money. And that gives me cause for some very great concerns indeed...so now there's another elephant in the room for you folks...
Because the positive studies are worth big bucks?
Yes indeed, very weird, a little comment out of nowhere from what looked like maybe coming from the Swedish contingent, certainly European I'd say.
Hmm...two types of XMRV...two types of lab mice? The "Iron Curtain" reference is highly suggestive in itself...
OneWaySurvival
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Well, that Q&A was a doozy.
Here's a key point I'd like to know more about:
Dr. Coffin implied there is only one remaining obstacle to beginning small-scale clinical trials: A "reproducible, quantifiable viral [load] assay." After giving his opinion that the current "dersey" (sp?) assay (which Judy also referred to in the Q&A, but I can't place where else I've heard about this new XMRV viral-load assay somewhere on this forum) isn't suitable for biomarker monitoring, he instead suggested the best type would be a "nucleic acid assay." Right after he said this during the Q&A, I kept hoping someone would ask him a follow-up Q such as "OK, then how close are we to having a nucleic acid assay, or some other effectively quantifiable viral-load assay?"
Does anybody here know what a nucleic acid assay is and how soon researchers can realistically clear this developmental hurdle to allow clinical trials to begin?
Here's a key point I'd like to know more about:
Dr. Coffin implied there is only one remaining obstacle to beginning small-scale clinical trials: A "reproducible, quantifiable viral [load] assay." After giving his opinion that the current "dersey" (sp?) assay (which Judy also referred to in the Q&A, but I can't place where else I've heard about this new XMRV viral-load assay somewhere on this forum) isn't suitable for biomarker monitoring, he instead suggested the best type would be a "nucleic acid assay." Right after he said this during the Q&A, I kept hoping someone would ask him a follow-up Q such as "OK, then how close are we to having a nucleic acid assay, or some other effectively quantifiable viral-load assay?"
Does anybody here know what a nucleic acid assay is and how soon researchers can realistically clear this developmental hurdle to allow clinical trials to begin?
Cort
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Did he really say that? That's amazing. Talk about taking a stand.....I really like Ruscetti - he seems very 'real', very down to earth.
I liked him asking who I guess was his boss - What about more funding! He doesn't mess around. Love to get his private thoughts on how all this has gone..that would be something.
Recovery Soon
Senior Member
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I know this a downer topic on an upbeat day- but your post has tapped into what I've been thinking lately- namely that the slow, conservative approach of ample replication studies without a sense of urgency is being calculated as the better long term scientific approach. In other words our relatively short term suffering and lives are accepted casualties for the long-term benefits of science and future sufferers.
What's a decade here or there if it helps mankind? type rationalization.
But the sheer energy of the confrontation indicates that something very new and significant is taking place
Hmm...not sure what you don't get Julius...wasn't a very big point really, I suppose just to say that the more heated the encounter, the more significant the question is...we have a roomful of the top scientists arguing about issues related to CFS, most of whom had probably never heard of it a year ago...that's new and significant...and a big argument has to be about something.
Cort
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I also thought Dr. Mikovits did very well; she got her points across, and stood her ground against some tough questioning with getting antagonized. I thought she was an excellent representative for the WPI.
Altho Dr. Coffin seems really kind of 'stuck' on the need for quantitative assays to measure viral load before even small clinical trials (can't you just measure functioning? How about activity levels?) and he completely misses the patient element, he certainly is an impressive thinker - the most impressive one I thought. I felt he worked hard to keep the door open when people with negative interpretations chimed in. It was interesting to hear him say...I think we're doing pretty well even though we're in this 'zone of chaos' or however he put it...we're right on track !!!! (I wonder what off-track is like
). Some people just seemed to making points; eg McClure - we can't find it with PCR or serology - while not responding to Dr. Mikovits answer why that might have been so. They didn't seem to get into the wrong 'clone' or wrong set of primers stuff at all at the part I saw.
Sing
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Seems to me that as far as the scientific researchers go, we are like lab mice.
ME-CFS patients=Lab mice
And the irony of our probable infection with a retrovirus from mice.
ME-CFS patients=Lab mice
And the irony of our probable infection with a retrovirus from mice.
I felt the new study by Ian Lipkin was good news. My major concern is with the patient selection. It's very important that plenty of sickest patients of Dr Komaroff, Dr Peterson, Dr Bell, and Dr Klimas are used in this study. I also agree with one of the commenters that the blood and other other body fluids (unine?) taken from these patients should be banked and used in all future CFS/HMRV studies so there is no question about which patient cohort we are dealing with.
Cort
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LOL - well done!
Yes, forgot that bit, does seem significant. Geographical - and apparently climate related - distribution of MS is also a potentially related mystery.
What on earth could explain such geographical variance of strains of virus?! Occurring in different strains of mice I could understand, but is that the case here? Not in the case of MS, because it's where you grow up until early teenage that matters, not where you were born nor purely your genetics (as I recall).
Somehow related to incidence of sunlight, it's thought...but how on earth? Been puzzling that one nearly a year now...only idea I've come up with is it could relate somehow to the plant life in the area, and that this could somehow be where the toxic mold enters the picture. But I still can't quite make sense of it.
ETA: Unless Vitamin D levels affect body chemistry in some way relevant to the immune defences
ixchelkali
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But individual patients using off-label antiretrovirals doesn't take money away from the common pot. Especially since insurance won't cover it so the patients themselves are paying up the wazoo for them. I suppose you could make the argument that they should donate that money to the common cause, but that's a stretch.
When he was talking about whether it makes sense to start clinical trials now, what you say applies, but he seemed to also condemn individual use. He may be right that for most of us it's ill-adviced at this point, but as long as it is a fully informed decision, I think the severely ill shouldn't be judged if they decide to try it. You can't say, don't judge us until you've walked a mile in our shoes, because if we could walk a mile it wouldn't be an issue!
Cort
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I missed part of it because of connection problems but it seemed like a rough end session. I think it showed us that while important members are convinced (Ruscetti) others are going to want to nail down the loose ends and answer most of the questions about the PCR. I liked Mikovits stating why she thought that PCR was secondary....that was very interesting...but the researchers seem to be really fixated on it.
The best news for me was Lipkin leading the new study. He sounds like the guy they send out when they need a difficult pathogen problem solved.......I thought that was very positive.
On the other hand as Dr. Coffin noted researchers are reaching into their own pockets, so to speak, to fund XMRV research and that is going to start running out at some point. There was no help on that end from that end from the NCI; they may fund some grants but it sounds like they, like others, are waiting for validated test results. I hope the Blood study gets done by XMAS, as was suggested - that's just around the corner, really.
The best news for me was Lipkin leading the new study. He sounds like the guy they send out when they need a difficult pathogen problem solved.......I thought that was very positive.
On the other hand as Dr. Coffin noted researchers are reaching into their own pockets, so to speak, to fund XMRV research and that is going to start running out at some point. There was no help on that end from that end from the NCI; they may fund some grants but it sounds like they, like others, are waiting for validated test results. I hope the Blood study gets done by XMAS, as was suggested - that's just around the corner, really.
Originally Posted by Mark
But the sheer energy of the confrontation indicates that something very new and significant is taking place
Hmm...not sure what you don't get Julius...wasn't a very big point really, I suppose just to say that the more heated the encounter, the more significant the question is...we have a roomful of the top scientists arguing about issues related to CFS, most of whom had probably never heard of it a year ago...that's new and significant...and a big argument has to be about something.
Oh, ok. Thought you meant something new and significant between Mikovits and Mclure.
That quote was from a Cleveland Clinic tweet from earlier in the day - probably from his CFS talk.