Dr. Mikovits of the WPI to Host Live Q&A Session Regarding XMRV 22nd Jan
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jackie
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1.What happens if you load AdobeFlashPlayer about 50 times? (I only heard the first few minutes...WAHHHHHH!
)
2.Nina...you don't have 'scetti in Germany?
3.George...don't each too much...too much 'scetti makes dogs poot.
4.Seriously....I know that POOTED means something REALLY important, right?
5.ComeBackShane....I mean, ShanesComeBack! (or ShaneComesBack!)...Hi Buddy! Doing OK?
I'm going to the BooBox....jackie:Retro redface::Retro tongue::
)2.Nina...you don't have 'scetti in Germany?
3.George...don't each too much...too much 'scetti makes dogs poot.
4.Seriously....I know that POOTED means something REALLY important, right?
5.ComeBackShane....I mean, ShanesComeBack! (or ShaneComesBack!)...Hi Buddy! Doing OK?
I'm going to the BooBox....jackie:Retro redface::Retro tongue:
:
Very good!
Dr. Yes
Shame on You
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Well, here's what I could glean from the Q & A despite numerous interruptions and brain fog/smog/toxic gas... It is HIGHLY unlikely that even the quoted stuff below is the actual quote, OK?? Just as near to it as I could get... But I'm pretty sure I got the essence of it.
She says around half of negative VIPdx PCR results may be false negative (her take), and "there's no reason to pay to get tested right now"... (rough quote)... says it would be better to participate in research studies at this time...
Said non-steroidal anti-inflammatories could help (Does she mean NSAID?) via reducing inflammatory processes that seem to activate virus; said speculatively that supplements that boost NK cell function could help (didn't say which kind are safe, but said some are); said be careful since supplements are not FDA regulated and may contain toxins that would make things worse for illness...
Hypothesizes that XMRV may cause underlying immune defect that allows other pathogens to become chronically activated (Lyme, HHV6, EBV, etc...); if they can treat the retrovirus, the chronic Lyme, herpesvirus, etc. will go down.
Said you don't need to stop antivirals for XMRV test because they don't target retroviruses anyway.
They don't know about sexual transmission or vertical transmission for certain yet, but she thinks vertical is likely.
Said if nothing else comes out of this study, she hopes this allows people to be diagnosed early, when it's most treatable, as opposed to 6 months later when your immune system is already messed up by virus.
Regarding the Imperial College study--
On using plasmid in a water control: "I can see a bowling ball in a bathtub, too, but I can't see a needle in a haystack". Also: "why would they choose to use a different section of DNA than we did?" Another: "One of the things you have to use is at least 750 nanograms of DNA in blood to get PCR results"; IC did not quantify the DNA in their samples so they don't know if there was enough...
And: "If they had asked us to for postive blood samples, we would have sent them; we would draw it and send it directly so there was no chance of even potential contamination (with mouse retrovirus)." Stressed over and over that there's no way they had contamination with mouse retrovirus... gave all the reasons...
Geography: Yes, maybe there's XMRV-2 variant in UK (i.e. it's possible, at this stage we don't know); she got a desperate email from China and the sample according to Dr. Sam Chow(?) contains what may be a more aggressive related virus - she's not sure, and said this is all anecdotal..
Mentioned a cytokine/chemokine immune signature they're trying to refine into a biomarker for XMRV infection (in CFS, I think); problem is it's highly time-dependent; cytokine expression is "like an EEG" of viral activity and changes/spikes very irregularly.
Looking for viral DNA in saliva as part of their transmission studies (based on anecdotal evidence of that sort of transmission; just to rule it out); looking into XMRV in POTS, some autism patients (who have NK abnormalities)
She's working with drug companies for antiretroviral drug development
Piggybacking: "No evidence for that in any retrovirus"
They're working closely with the Federal Working Group/ DHHS on all relevant issues - I assume the blood safety issue is part of what she's talking about. She doesn't seem to have any complaints yet on how all that is going, which is good...
Says write to her at: judym@wpinstitute for questions (answer within a week, if not send to her again)
Well, now I REALLY want to hear the last bit of the actual talk!
p.s. if anyone's wondering..accidentally deleted this post when i thought i had put it in the wrong thread.. :Retro redface:
She says around half of negative VIPdx PCR results may be false negative (her take), and "there's no reason to pay to get tested right now"... (rough quote)... says it would be better to participate in research studies at this time...
Said non-steroidal anti-inflammatories could help (Does she mean NSAID?) via reducing inflammatory processes that seem to activate virus; said speculatively that supplements that boost NK cell function could help (didn't say which kind are safe, but said some are); said be careful since supplements are not FDA regulated and may contain toxins that would make things worse for illness...
Hypothesizes that XMRV may cause underlying immune defect that allows other pathogens to become chronically activated (Lyme, HHV6, EBV, etc...); if they can treat the retrovirus, the chronic Lyme, herpesvirus, etc. will go down.
Said you don't need to stop antivirals for XMRV test because they don't target retroviruses anyway.
They don't know about sexual transmission or vertical transmission for certain yet, but she thinks vertical is likely.
Said if nothing else comes out of this study, she hopes this allows people to be diagnosed early, when it's most treatable, as opposed to 6 months later when your immune system is already messed up by virus.
Regarding the Imperial College study--
On using plasmid in a water control: "I can see a bowling ball in a bathtub, too, but I can't see a needle in a haystack". Also: "why would they choose to use a different section of DNA than we did?" Another: "One of the things you have to use is at least 750 nanograms of DNA in blood to get PCR results"; IC did not quantify the DNA in their samples so they don't know if there was enough...
And: "If they had asked us to for postive blood samples, we would have sent them; we would draw it and send it directly so there was no chance of even potential contamination (with mouse retrovirus)." Stressed over and over that there's no way they had contamination with mouse retrovirus... gave all the reasons...
Geography: Yes, maybe there's XMRV-2 variant in UK (i.e. it's possible, at this stage we don't know); she got a desperate email from China and the sample according to Dr. Sam Chow(?) contains what may be a more aggressive related virus - she's not sure, and said this is all anecdotal..
Mentioned a cytokine/chemokine immune signature they're trying to refine into a biomarker for XMRV infection (in CFS, I think); problem is it's highly time-dependent; cytokine expression is "like an EEG" of viral activity and changes/spikes very irregularly.
Looking for viral DNA in saliva as part of their transmission studies (based on anecdotal evidence of that sort of transmission; just to rule it out); looking into XMRV in POTS, some autism patients (who have NK abnormalities)
She's working with drug companies for antiretroviral drug development
Piggybacking: "No evidence for that in any retrovirus"
They're working closely with the Federal Working Group/ DHHS on all relevant issues - I assume the blood safety issue is part of what she's talking about. She doesn't seem to have any complaints yet on how all that is going, which is good...
Says write to her at: judym@wpinstitute for questions (answer within a week, if not send to her again)
Well, now I REALLY want to hear the last bit of the actual talk!
p.s. if anyone's wondering..accidentally deleted this post when i thought i had put it in the wrong thread.. :Retro redface:
K
Knackered
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Which NSAID? Any? I have diclofenac, so I'm wondering whether it'd be worth taking one every 4 hours or so. Which supplement? did she say?
gracenote
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I thought I heard her say that you need to keep treating the viruses and Lyme etc. along with treating the retrovirus. I think the example she gave was pneumonia in AIDS patients. You have to treat the pneumonia too.
Thanks Dr. Yes for your great notes.
Dr. Yes
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I wish now I had remembered that question and sent it to Prohealth... well, I could email her anyway... I don't know if she addressed the question of XMRV in epidemics. But that was a major reason people brought up piggybacking in the first place. Also, I'd like to hear her take on Hyde's contention that XMRV's incubation period is too short to account for the epidemic transmission rates.
Dr. Yes
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Thanks gracenote - Yes, she did say to treat XMRV and coinfection simultaneously. That's when she mentioned that it shouldn't matter that you were taking antivirals when you got tested for XMRV, since it's a retrovirus.
Knackered - I didn't hear if she specified a type of NSAID cuz someone interrupted me right then! NSAIDs are NOT healthy to be on for a long time, though; most degrade the intestinal lining and supposedly can lead to leaky gut, which is part of the whole problem... I wouldn't recommend going on NSAIDs just because of what she said as an aside (she's kind of a loose cannon in Q&A sessions and interviews, I've noticed, and tends to overstate a wee bit sometimes..). I don't think she mentioned a specific supplement for NK cell boosting, either.
Dainty - yeah, I heard her say that too: no false positives, only false negatives.
Knackered - I didn't hear if she specified a type of NSAID cuz someone interrupted me right then! NSAIDs are NOT healthy to be on for a long time, though; most degrade the intestinal lining and supposedly can lead to leaky gut, which is part of the whole problem... I wouldn't recommend going on NSAIDs just because of what she said as an aside (she's kind of a loose cannon in Q&A sessions and interviews, I've noticed, and tends to overstate a wee bit sometimes..). I don't think she mentioned a specific supplement for NK cell boosting, either.
Dainty - yeah, I heard her say that too: no false positives, only false negatives.
Esther12
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Thanks for that summary DrYes.
Can they really know this? I always get worried when people make such confident claims - I'm tend to assume that we know less than we'd like to think, but I really don't have the knowledge to judge in this instance. From my reading of other science writers about XMRV, they're less confident in our ability to avoid false positives. Anyone here like to offer an oppinion? It would be harsh for some of the seriously ill people who've now been told they have XMRV and a potential explanation for their illness to later be told 'Whoops!'
Can they really know this? I always get worried when people make such confident claims - I'm tend to assume that we know less than we'd like to think, but I really don't have the knowledge to judge in this instance. From my reading of other science writers about XMRV, they're less confident in our ability to avoid false positives. Anyone here like to offer an oppinion? It would be harsh for some of the seriously ill people who've now been told they have XMRV and a potential explanation for their illness to later be told 'Whoops!'
shannah
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I didn't hear a specific NSAID recommended in the small portion of this presentation that I heard but previously heard Aleve. Don't know if one is better than the others though.
calzy
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:Sign Good one:HAHAHA
good one!
Another thing I'm jsu tnow remember that I don't think has been mentioend here yet: she said that one possible reason it's affecting women at a higher ratio than men is because of hormons being the "trigger" or "stresser" (forgot the exact word she used) and that most cases of CFS that happen in childhood begin right around puberty at 12 or 13. That's what happened with.....that WPI girl that's in the news pictures (sorry my brain is so dead). It caught my attention because 13 years old is when my chronic illness began, though it would be years before i was diagnosed.
She did. As far as my foggy brain can remember she specifically mentioned autism, non-typical MS, Fibro, chronic Lyme, and POTS, and I think she mentioned others...she sounded very hopful that XMRV might be found as an underlying factor in these and others. Breast cancer occuring very young was even mentioned as a possibly having a connection with XMRV.
She did. As far as my foggy brain can remember she specifically mentioned autism, non-typical MS, Fibro, chronic Lyme, and POTS, and I think she mentioned others...she sounded very hopful that XMRV might be found as an underlying factor in these and others. Breast cancer occuring very young was even mentioned as a possibly having a connection with XMRV.
Dr. Yes
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Julius (about NSAIDs) -
Yes, I used to take Advil daily to help with the pain or with allergic inflammation... But again, NSAIDs are NOT good to take chronically, esp. with the risk of increasing intestinal permeability. I also don't know that they would impact cytokine/upstream chemokine production at all, and those may be the 'triggers' for the virus she was referring to. I really think she was engaging in pure 'cocktail reasoning' there (as they call it). She said she was kind of thinking aloud at that point...
Yes, I used to take Advil daily to help with the pain or with allergic inflammation... But again, NSAIDs are NOT good to take chronically, esp. with the risk of increasing intestinal permeability. I also don't know that they would impact cytokine/upstream chemokine production at all, and those may be the 'triggers' for the virus she was referring to. I really think she was engaging in pure 'cocktail reasoning' there (as they call it). She said she was kind of thinking aloud at that point...
Thanks Dr Yes,
I wouldn't go out and start anything yet. I know theres still a long way to go. I guess I was just doing some 'cocktail reasoning'(lol) of my own.
I'm feeling really chuffed right now, I gotta say. Everything in that talk, reading between the lines, sounded to me like 'yeah, we got it, it's frickin XMRV alright'.
Fingers crossed!!
I wouldn't go out and start anything yet. I know theres still a long way to go. I guess I was just doing some 'cocktail reasoning'(lol) of my own.
I'm feeling really chuffed right now, I gotta say. Everything in that talk, reading between the lines, sounded to me like 'yeah, we got it, it's frickin XMRV alright'.
Fingers crossed!!