XMRV Buzz - Take a Deep Breath/the Big XMRV Meeting, Singh On XMRV, Sample prep?
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Cort
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Cort
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Absolutely. I expect to host it. I will host it. (We will host it)
Has anyone started emailing? I just got this from Dr. Holmberg - I wonder if he started getting more emails.
Jerry A. Holmberg, Ph.D.
He said the absolute minmum. It always amazes how close to the vest they always feel they have to play things! No general timeline.....Its like pulling teeth. Why not just say - we expect them in a month!
All we do know is that according to several people, including Dr. Glynnis - the co-chair - around Oct 12th when the end was surely in sight, they expected to be done in early November - and now its mid-November - so its taking longer than expected - nothing new there. I suppose they could announce the results any day now or next week or next month. Right now they're just a bit behind - in a week or two I'll start thinking that things took a twist at some point.
IRB Board approval was one of the first things, I believe, they needed to get done. I assume that he just mentioned that to underscore why its taken so long.
I will ask him to be more specific about timing.
George
waitin' fer rabbits
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Several people e-mailed this moning. Humm pretty quick reply but no info really ( frowns)
About you hosting Excellent! we be cooking on the front burner with gas! And a super thanks to Otis for putting on a web page, setting up an e-mail for the dust up and putting it on his facebook page. Whhooohhhooo!
About you hosting Excellent! we be cooking on the front burner with gas! And a super thanks to Otis for putting on a web page, setting up an e-mail for the dust up and putting it on his facebook page. Whhooohhhooo!
Cort
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That could very well be what did it. I emailed Dr. Holmberg today (after I got his email) and told him he was on the verge of another email campaign. I think we learned from the Time for Action campaign that any campaign should include Dr. Collins and probably Sec. Sebelius as well. Probably the head of the NHLBI as well - or whoever pays Dr. Holmberg's salary.
Recovery Soon
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That would be us.
Phase II required institutional review board (IRB) approvals and consists of pilot studies to evaluate how to best decrease the variability in sample preparation. As a result, Phase II is in progress and there are no results to report yet. We will report results when available.
Jerry A. Holmberg, Ph.D.
Okay it's minimalist, but it's something. we're not asking for the moon, yet...just a little respect and by telling us there's nothing to report yet, that's respectful communication.
thanks for sharing.
Jerry A. Holmberg, Ph.D.
Okay it's minimalist, but it's something. we're not asking for the moon, yet...just a little respect and by telling us there's nothing to report yet, that's respectful communication.
thanks for sharing.
Hey Cort. In the interest of time I threw something together but do with it what you wish.
Here's the quick and dirty version.
http://sites.google.com/site/phase2dustup/
Here's the quick and dirty version.
http://sites.google.com/site/phase2dustup/
Esther12
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lol. It's funny how often officials will use language like that. It's easy to just absorb it without thinking about what they're saying.
I finally got my mojo working and here's how I feel about it.
We have been promised transparency. We've been told we would see these results early this month. Polite emails to the BWG chairs have been ignored. All indications are that the data is in and being quietly circulated - e.g. Lipkin NY meeting of 11/5. Time to stop knocking and kick the door in.
We have been promised transparency. We've been told we would see these results early this month. Polite emails to the BWG chairs have been ignored. All indications are that the data is in and being quietly circulated - e.g. Lipkin NY meeting of 11/5. Time to stop knocking and kick the door in.
George
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This is pure prevaricating. If I read it correctly then it sounds like
However this was not what the Phase II was designed to do. It was designed to set the standard protocol up period. Phase III would then be launched to test blood samples, and Phase IV for general population. MEANWHILE labs would be using the Phase II standard protocol to test patients and various blinded samples to move on within the science part of it, to determine if XMRV is linked to ME/CFS patients.
Looks like they changed the rules, or he has miss-stated what is going on or I'm misreading this very tiny set of words that we have been so graciously given.
Hmmm it still puts us on the horns of dilemma on how to proceed with the campaign. Since all we are asking for this "protocol" itself not the results of how many patients are positive and how many are negative, I say push it. We are asking for a very specific thing, the write up of the protocol that is being recommended for use among the labs.
Whatcha think???
Oh and btw Otis has walked me through the entire process of how to do this cause I'm clueless so his little "toss together" are cute but not quite accurate. He's been a driving force! Thanks Otis! (woof!)
eric_s
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What surprises me a bit is that now phase II is still in progress when a while back people seemed quite confident that the contamination question will be sorted out quickly. Why that change? Did something unexpected happen or where they playing for time?
George
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Very good question eric. I think they are playing for time. Maybe stringing it out over the next few months with bits and pieces. I'm disappointed but not surprised. (grins) I plan on doing the e-mail round again the in the morning. (sigh)
alex3619
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Hi, One of the possibilities that came up on a thread months ago with respect to other issues (and another group) is that they might be waiting for a long weekend, and will make an announcement late on the Friday afternoon. Bye, Alex
ps for the purpose of minimizing media impact ...
ps for the purpose of minimizing media impact ...
eric_s
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It's very hard to know what is the right thing to do when you can't know what the true situation is because nobody is telling you
I still appreciate what's going on, that there is the BWG, Lipkin, Alter/Lo, Singh and others, we are in a way better position than before.
But i really don't like all the secrecy, contradicting statements by different parties (XMRV, no XMRV, contamination, no contamination, etc.) and how long it all takes.
Is this really necessary??
I realize it's probably all very difficult, technically, but still, there are probably many millions that depend on this all over the world and it's potentially a serious pandemic (correct term?), if you think of all the conditions XMRV and related viruses could be causing, while they might still be spreading uncontrolled.
So i think in this case it's not right to stick to the normal protocols, also for the scientists not directly working for the government. I mean the fact that they don't shed any info whatsoever about their results before publishing. Especially when it's at the moment hard to publish, at least if you are the WPI.
So even if they can't tell us all right now, i think we should get more and more reliable info about when we can expect information and i would also appreciate it very, very much, if the investigators could release some sort of progress reports, interim results of their studies.
I mean what do we know right now about the ongoing Alter/Lo or Singh studies? More or less nothing. And i think they are very important for us, they could be the game-changers we are waiting for. The humans that are suffering and waiting are more important than the copies a journal can sell or the reputation or income of a scientist. This is about public health on a global scale, not single persons.
I think it's almost impossible for a single person like me, for example, to change this, but where are all the patient orgs? They should be pushing for this. The CAA is in a special position, since they have a person in the BWG, so i understand they can't do everything, they can't cause too much "trouble" or they risk not being part of such groups in the future or losing contacts they have, that are very valuable for all of us. But they certainly can do something and there are other organizations as well, aren't there?
I really think in this special case of XMRV, things should be going a bit differently than normal, there should be another way of how things are done.
But then on the other hand you don't want to stress those scientists that might not be used to politics and publicity so much that they stop working on this or are too distracted.
What i would want to see is the BWG, Lipkin, Alter/Lo and Singh finishing and publishing their work as quicky as possible, but of course not faster than what they need to to it well.
And then, if XMRV really is relevant in CFS and maybe other illnesses, i would like to see a really big, coordinated effort to determine it's role and find treatments. I don't mean some scientists here and there working on it, i mean all the resources bundled. Like the Manhattan Project or something similar. I mean it's about some millions of people, we suffer, we generate costs, we can't contribute, we might be spreading this and we have been waiting for too f* long. And we have done nothing wrong. We did not go and pick this up, we just got it one day, without any idea something like this even exists, at least in my case.
I still appreciate what's going on, that there is the BWG, Lipkin, Alter/Lo, Singh and others, we are in a way better position than before.
But i really don't like all the secrecy, contradicting statements by different parties (XMRV, no XMRV, contamination, no contamination, etc.) and how long it all takes.
Is this really necessary??
I realize it's probably all very difficult, technically, but still, there are probably many millions that depend on this all over the world and it's potentially a serious pandemic (correct term?), if you think of all the conditions XMRV and related viruses could be causing, while they might still be spreading uncontrolled.
So i think in this case it's not right to stick to the normal protocols, also for the scientists not directly working for the government. I mean the fact that they don't shed any info whatsoever about their results before publishing. Especially when it's at the moment hard to publish, at least if you are the WPI.
So even if they can't tell us all right now, i think we should get more and more reliable info about when we can expect information and i would also appreciate it very, very much, if the investigators could release some sort of progress reports, interim results of their studies.
I mean what do we know right now about the ongoing Alter/Lo or Singh studies? More or less nothing. And i think they are very important for us, they could be the game-changers we are waiting for. The humans that are suffering and waiting are more important than the copies a journal can sell or the reputation or income of a scientist. This is about public health on a global scale, not single persons.
I think it's almost impossible for a single person like me, for example, to change this, but where are all the patient orgs? They should be pushing for this. The CAA is in a special position, since they have a person in the BWG, so i understand they can't do everything, they can't cause too much "trouble" or they risk not being part of such groups in the future or losing contacts they have, that are very valuable for all of us. But they certainly can do something and there are other organizations as well, aren't there?
I really think in this special case of XMRV, things should be going a bit differently than normal, there should be another way of how things are done.
But then on the other hand you don't want to stress those scientists that might not be used to politics and publicity so much that they stop working on this or are too distracted.
What i would want to see is the BWG, Lipkin, Alter/Lo and Singh finishing and publishing their work as quicky as possible, but of course not faster than what they need to to it well.
And then, if XMRV really is relevant in CFS and maybe other illnesses, i would like to see a really big, coordinated effort to determine it's role and find treatments. I don't mean some scientists here and there working on it, i mean all the resources bundled. Like the Manhattan Project or something similar. I mean it's about some millions of people, we suffer, we generate costs, we can't contribute, we might be spreading this and we have been waiting for too f* long. And we have done nothing wrong. We did not go and pick this up, we just got it one day, without any idea something like this even exists, at least in my case.
pictureofhealth
XMRV - L'Agent du Jour
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I think it was daft to give a prediction of 3 weeks. No one could possibly know how long it would take. I expect scientists new to ME/CFS will start to 'get that' as we go along - better not to be too optimistic with predictions. Everyone wants time frames, but this is an unpredictable and new area, and it is impossible to be accurate and please everyone here.
Remember John Coffin's 'prediction' almost a year ago at the CFSAC meeting where XMRV was first discussed (Wanda had invited him along for an expert virology comment)? Nancy Klimas asked JC how long it might be before we had - I can't remember whether it was a reliable universal lab test or treatment for XMRV for patients (?) - and he said something like - '.. it's hard to say and he didn't like to be pressed on a timeframe, but ..' - get this - he expected something within "6 months".
Ummmm .. still waiting ...
Remember John Coffin's 'prediction' almost a year ago at the CFSAC meeting where XMRV was first discussed (Wanda had invited him along for an expert virology comment)? Nancy Klimas asked JC how long it might be before we had - I can't remember whether it was a reliable universal lab test or treatment for XMRV for patients (?) - and he said something like - '.. it's hard to say and he didn't like to be pressed on a timeframe, but ..' - get this - he expected something within "6 months".
Ummmm .. still waiting ...
Esther12
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We could be putting some of our frustration over the long period of uncertainty unfairly on the BWG - especially given the history we've had of poor CFS research.
It seems like the BWG has been working well, and keeping us informed... but it's been a year, and there's still the possiblity that the WPI are completely wrong.
They could have asked the WPI to identify some CFS patients as XMRV positive, taken independant and blinded samples, and provided them blinded with controls, back to the WPI. If the WPI were able to accurately identify those they'd previously claimed were XMRV positive - that would have moved us on pretty dramatically. It could have been done in a month. I can't believe how long we've been stuck with progressing so little.
It's getting pretty irritating, but I don't think it's anyone in particular's fault. The uncentralised nature of western science meant that no-one took charge until it became obvious that we were getting on-going conflicting results.
It seems like the BWG has been working well, and keeping us informed... but it's been a year, and there's still the possiblity that the WPI are completely wrong.
They could have asked the WPI to identify some CFS patients as XMRV positive, taken independant and blinded samples, and provided them blinded with controls, back to the WPI. If the WPI were able to accurately identify those they'd previously claimed were XMRV positive - that would have moved us on pretty dramatically. It could have been done in a month. I can't believe how long we've been stuck with progressing so little.
It's getting pretty irritating, but I don't think it's anyone in particular's fault. The uncentralised nature of western science meant that no-one took charge until it became obvious that we were getting on-going conflicting results.
Cort
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Cort
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Damn, Otis - could you do my website next??????
My guess is that they don't have anything definitive to release and that -based on what Jenny said- Ian Lipkin doesn't have their protocols yet. That's just a guess.
I think they should be more forthcoming about what's going on and what the timeline is - that's not a state secret! - and hopefully this will help with that and with their apparent reluctance to keep us informed. At least they'll know we are out here.
I'll put it up on the Buzz page.
(I'd love to see what you can do when you actually have some time......
Nice site! )