I guess you didn't read very carefully. I didn't deem any potential links between XMRV and the diseases you named irrelevant. I deemed your comments about any of that irrelevant to the discussion of Mikovits' alarmist comments and the damage they do to her and our credibility.
XMRV Article in Chicago Tribune and other papers
- Thread starter kurt
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I guess you didn't read very carefully. I didn't deem any potential links between XMRV and the diseases you named irrelevant. I deemed your comments about any of that irrelevant to the discussion of Mikovits' alarmist comments and the damage they do to her and our credibility.
parvofighter
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I just put my finger on it
I just put my finger on what "gets" me about your posts on this topic... and that's your implicit conclusion that we should abide by your determination of what context is relevant - rather than Dr Mikovits'.
Recognizing that you feel a proprietary ownership of "what is relevant", allow me to share an analogy. Just before the indonesian tsunami hit, a young schoolgirl entreated with her family and strangers to find higher ground, when she saw the waters abnormally receding. No doubt she was viewed as hysterical by some... but in the process of convincing tourists to flee to higher ground, she is credited with saving hundreds of lives. ( [FONT="]http://www.thaipro.com/thailand_00/320-tsunami-tilly-smith.htm[/FONT] )
Since when do you call the shots on what is relevant? Let's just say that I deem your comments about context being irrelevant, irrelevant.
Gentle Mr.Kite. As a matter of fact, I did read carefully, and you dismissed dire linkages of XMRV with cancer, fatal cardiac disease, and contamination of the blood supply with 3 short sentences: a dismissive wave of the hand:
I just put my finger on what "gets" me about your posts on this topic... and that's your implicit conclusion that we should abide by your determination of what context is relevant - rather than Dr Mikovits'.
Recognizing that you feel a proprietary ownership of "what is relevant", allow me to share an analogy. Just before the indonesian tsunami hit, a young schoolgirl entreated with her family and strangers to find higher ground, when she saw the waters abnormally receding. No doubt she was viewed as hysterical by some... but in the process of convincing tourists to flee to higher ground, she is credited with saving hundreds of lives. ( [FONT="]http://www.thaipro.com/thailand_00/320-tsunami-tilly-smith.htm[/FONT] )
Tilly was enjoying the pleasures of Maikhao beach in Phuket with her parents Penny and Colin Smith and her 7-year-old sister Holly when suddenly the sea retreated very fast for several hundred meters and the water began to bubble.
When the sea-water suddenly pulled back, many foreign holidaymakers and local Thais became curious and wanted to go look what was going on, but young Tilly Smith froze in horror as her mind immediately went back to the geography lesson, her teacher, Mr. Kearney gave only two weeks before she and her family flew out to the resort island of Phuket in Thailand.
Tilly started to talk very agitated, her mother said, she was talking about earthquakes under the sea, tectonic plates and tsumani ... tsumani. Mummy, we must get of the beach, a tsumani is coming, Tilly said. Tilly got more and more hysterical and started screaming Tsunami wave ... Tsunami wave.
We simply did not understand what Tilly was talking about until suddenly she started shouting the magic words: Tidal Wave ... Tidal wave, Tsunami is coming.
Within seconds Tilly's hysterical words, "Tidal Wave", spread like wildfire on Phuket's Maikhao beach and people started running inland. Moments later Maikhao beach in Phuket was deserted as everyone was running to higher grounds.
We ran off the beach as fast as we could, said Tilly's father Colin Smith, and took refuge on the first floor of our hotel. Minutes later, a massive wall of water rolled over the beach, destroying everything in its path.
Later it turned out that Maikhao beach was one of the only places in Phuket where no one was injured or killed and Tilly Smith has been locally hailed as a hero.
By your rules, Dr Kite, Tilly would be vilified. Tilly's warnings - that people should run for higher ground - might readily be taken as hysterical if the context - that abnormal receding of water is associated with an impending tsunami - is not considered.When the sea-water suddenly pulled back, many foreign holidaymakers and local Thais became curious and wanted to go look what was going on, but young Tilly Smith froze in horror as her mind immediately went back to the geography lesson, her teacher, Mr. Kearney gave only two weeks before she and her family flew out to the resort island of Phuket in Thailand.
Tilly started to talk very agitated, her mother said, she was talking about earthquakes under the sea, tectonic plates and tsumani ... tsumani. Mummy, we must get of the beach, a tsumani is coming, Tilly said. Tilly got more and more hysterical and started screaming Tsunami wave ... Tsunami wave.
We simply did not understand what Tilly was talking about until suddenly she started shouting the magic words: Tidal Wave ... Tidal wave, Tsunami is coming.
Within seconds Tilly's hysterical words, "Tidal Wave", spread like wildfire on Phuket's Maikhao beach and people started running inland. Moments later Maikhao beach in Phuket was deserted as everyone was running to higher grounds.
We ran off the beach as fast as we could, said Tilly's father Colin Smith, and took refuge on the first floor of our hotel. Minutes later, a massive wall of water rolled over the beach, destroying everything in its path.
Later it turned out that Maikhao beach was one of the only places in Phuket where no one was injured or killed and Tilly Smith has been locally hailed as a hero.
Since when do you call the shots on what is relevant? Let's just say that I deem your comments about context being irrelevant, irrelevant.
Adam
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Adam
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Bravo Parvo. :victory::victory::victory:
justinreilly
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Agreed- i'd say 'not (yet) scientifically proven'
It seems to me that Dr Mikovits went to this conference in a deliberate attempt to create more publicity, which is clearly a strategy that worked, as the article we are discussing indicates.
To call her statements (or her person) "hysterical" is a value judgment that you are free to hold. I personally wouldn't agree with that attribution because it seems to me that her comments are probably:
1. driven by genuine concern based on data she has gathered
2. intended to mobilize her audience, i.e. to bring a new, highly active lobby group (autism carers and sufferers) into the PR fight over this issue.
Hysteria implies emotion over-riding reason, which I can't see occurring here.
As for whether this strategy is actually the right one - I'm not quite so sure. It certainly seems that the "lie low and wait for the scientific community to figure it out" strategy has not been hugely successful, either in the distant or recent past. So, trying a new strategy seems like a reasonable gamble to take. I agree though that linking our cause to autism, with its highly contentious fight over vaccinations is a risky move to make. The question is whether we can get anywhere without taking some risks at this stage.
To call her statements (or her person) "hysterical" is a value judgment that you are free to hold. I personally wouldn't agree with that attribution because it seems to me that her comments are probably:
1. driven by genuine concern based on data she has gathered
2. intended to mobilize her audience, i.e. to bring a new, highly active lobby group (autism carers and sufferers) into the PR fight over this issue.
Hysteria implies emotion over-riding reason, which I can't see occurring here.
As for whether this strategy is actually the right one - I'm not quite so sure. It certainly seems that the "lie low and wait for the scientific community to figure it out" strategy has not been hugely successful, either in the distant or recent past. So, trying a new strategy seems like a reasonable gamble to take. I agree though that linking our cause to autism, with its highly contentious fight over vaccinations is a risky move to make. The question is whether we can get anywhere without taking some risks at this stage.
free at last
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I dont think Judy M was comparing Symptomatic ME CFS to AIDS at all, I think the point she was trying to make is, what XMRV might lack in a lethal symptomatic way. It could certianly make up for in the huge amounts of people worldwide becoming infected.
what is the infection rate of HIV in the united states Compared to XMRV ? I honestly dont know. But i dont think its anywhere near 4 out of 100 people. That i feel might have been her message,
and dare i say alarm at a real lack of action so far being taken by any goverment. Though of course we have seen the blood supply wanting to be protected by some goverments ( and rightly so ) but the sheer figure of 3.7 % infection rate possibly worldwide, is cause for alarm in itself.
Especially as we dont know what this virus is doing yet. The fact that we dont know what this is doing to the human body yet, is seen as breathing space by those that say look it could just be a harmless retro virus. But of course the other side of this coin is because we dont know what the virus is capable of yet, with the very high infection rate discovered so far, Extreme alarm is actually the safer reaction to have
This is not hysteria, its being cautiouse untill we know more. Im amazed that some just dont seem to get how bad this situation actually could be. I wish some one who understands how viruses can spread through populations would try a little math on this
if we say XMRV has been infecting humans for 40 years ( could be more or less ?
and we are already at say 4% infection that implies 1% every ten years, over a 40 year time span starting from 0 ( or close to it ) but of course once at 4% the speed of the infection rate also goes up so has to be figured into the math, is anyone at least a little interested to try and do a best guess of this, starting from the earliest evidence that we think humans have been carrying this infection to the 4% figure that could be here already. I dont know enough about how this works to meaningfully try.
If judy M is concerned, and im sorry i trust her more than any other goverment agencies, i belive for once ( just for once ) shes actually playing it straight, Havent the ME / CFS community hoped for someone of her standing to come along and do some proper reasearch, and tell it straight.
Well when someone does, this is what she gets, its not enough to be fighting the complacent goverments and complacent scientists over this. But to see some that shes actually fighting for, stand up and question her, must be quite hurtful. And i wouldnt blame her if she just got out of it right here and now.
I for one support her all the way. If shes wrong then so be it. Yes mistakes can and do happen. But just for once at least we know she actually cares. Actually gives a damm. And as far as i can tell, can be trusted. and really is on the side of the sick. And common sense
If we lose her, we are possibly going back to the days of reeves and Wessley Or more just like them
Sometimes we dont know what we have untill we have lost it. I said it before ill say it again
for her, and for us, to help right the wrongs of the disgraceful past, i hope shes right, I hope xmrv is the smoking gun. and i hope at last we have found a true warrior. because untill she came along we had nothing. Thanks Judy and Annette if your wrong then i still support you. Because at least you really cared and tried your best, Following ones heart is almost seen as a weakness on this forum. Well i think its a strength, that will one day lead to a cure, Proud to be emotional, sometimes thats all you have left. The intellectuals can pick at that if they choose. But thats there weakness and confusion. Im not confused at all.
Martlet
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Well yes, she sounds good to our ears, but it is not us she needs to appeal to. If we could fund the research, we would already be doing it. What Mikovits has to do is to get agencies and individuals to sign on to her views and I really don't believe this is the way to do it. AIDS was different. People with AIDS looked sick. Really sick. They had kaposi's sarcoma, very visibly. They had visible fungal infections. When they marched, crawled or were wheeled to their protests, the general public could see that these were very sick people indeed. And they were dying. Obviously. In large numbers. But even then, it was not until it became clear to the general public that this was not a "gay disease," that this was something that could infect anyone and was infecting people - including children - that anything was done.
In contrast, most of us look too healthy. No-one can see the muscle pain, our reports of brain fog are subjective and the general public can't see our crimson crescents, let alone read our lab test results. Yelling that this is causing us a slow death is met by a yawn. Yelling that this is as bad as or worse than AIDS is met with absolute scorn because the fact is that it isn't.
Yes, some of us are very, very sick. Some of us - not many, as far as anyone can tell - die younger than other people, but so far I have only seen one study, a small one, which listed causes of death as heart failure, suicide and cancer at higher rates in ME/CFS patients while an even larger study showed no significant difference between us and the general population. Which study would you imagine scientists accept?
Yes, but again there could be other explanations. "The flu" is a vague term. We all know that not everything people call the flu is the flu. We tend to use the term to explain a set of symptoms, but those same symptoms could be caused by a variety of agents. Including chemicals. They have just discovered, for example, that Roundup, one of the most popular weed-killers on farms and around the home, causes the death of embryonic cells.
My point is that XMRV is not proven to be causative of CFS/ME. It has not been proven to be causative of anything and it seems to me that demanding that it be viewed as such, as Mikovits appears to be doing doesn't help us.
bakercape
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I have cfs
and both my 2 boys have autism. If one in a hundred kids get autism what are the mathmatical odds of that happening twice in a row. My wife and I have decided not to have any more children because of this. No one else in her family has autism. I have a strong feeling it is connected to my illness.
I put a poll up on this website a few months agoasking cfs parentsif there children were diagnosed with autism. I believe there were 12 responses and six parents with CFS said yes there children had autism.For all you math experts what are the mathmatical odds of that happening if one in one hundred children get autism but a sample of 12 in a poll has a 50% occurance rate. Something is going on here and someone needs to dig deeper.
and both my 2 boys have autism. If one in a hundred kids get autism what are the mathmatical odds of that happening twice in a row. My wife and I have decided not to have any more children because of this. No one else in her family has autism. I have a strong feeling it is connected to my illness.
I put a poll up on this website a few months agoasking cfs parentsif there children were diagnosed with autism. I believe there were 12 responses and six parents with CFS said yes there children had autism.For all you math experts what are the mathmatical odds of that happening if one in one hundred children get autism but a sample of 12 in a poll has a 50% occurance rate. Something is going on here and someone needs to dig deeper.
EXACTLY. I don't see what is so hard for people to understand about that simple point. Great rest of the post, too, thanks.
free at last
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No i think people do get the point, just dont think everyone is agreeing is all ?
I know maybe she should lie, and downplay the seriousness of what she sees is happening, and do what the likes of Reeves and wessley would do.
If she thinks a situation could be that seriouse enough to make a statement like that, Than maybe shes actually trying to wake everybody up.
If that doesnt happen. and she really does have to downplay the potentiall seriousness of this situation just to give her self credibillty. Then god help us all. Nothing is going to be done anyway if its really that bad.
Maybe Some scientists might actually think why is this women so worried, and actually start taking more notice. At least thats my hope, i suspect it was hers too. If shes wrong to do so. ( time might tell ) Maybe she still felt she had to speak out. Common sense over gaining credibillty points
Some things might be more important. Maybe this is just that thing
Martlet
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I know! I think this sort of rhetoric drives people away rather than persuading them of the validity of our cause.
There was a man called Barabbas. He was a loud-mouthed rabble-rouser who stood up against some minor injustices like crucifying people and feeding them to lions. Crowds cheered him, followed him and even stood and demanded his release one day in Jerusalem, instead of that sensible bloke, Jesus, who said there was a better way. As we all know, it was Jesus who went to the cross while Barabbas was freed to keep ranting and rabble-rousing. End result? Jerusalem was totally destroyed not thirty years later, the temple raised to the ground and the Jewish cause abandoned.
It feels like that to me now. The more she shouts, the more she insults, the more likely her work will fall into ruin and her work will lie in the science rubble heap.
alex3619
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Hi free at last
A conservative estimate of XMRV prevalence is more like 5% as I have said at length elsewhere, and the worst case is about 10%. Remember that the 3.7% figure is for healthy people. For true prevalence you have to combine healthy and ill prevalence - not easy when we still don't have good data, but much more than 4%!
The following is based on the wikipedia HIV prevalence rates:
HIV prevalence in Australia is 0.1%. This would make worst case XMRV 100x more prevalent (oops, I think my prior post said 1000x, that was an error!), and the likely ratio at 5% XMRV prevalence at 50x. HIV prevalence in the USA is 0.6%, which would make the worst case 16x worse, and the likely case 8x worse.
Lets suppose you only want to use the 3.7% figure. In Australia, XMRV prevalence would be 37x worse than HIV. In the USA, it is 6x worse.
Of course, in Lesotho (South Africa) the prevalence is 28%, so HIV is 7.5x worse than XMRV (using 3.7% XMRV prevalence) ... ahhh, but we don't know how HIV and XMRV interact, or what this does to prevalence rates. If we use an immunocompromised prevalence rate (the only one we have for this) of 10%, then HIV is potentially only 2.8x worse than XMRV prevalence in Lesotho (South Africa), the most HIV country (kingdom in this case) in the world! Doing a little more math to only use the 10% XMRV figure for the 28% with HIV, total XMRV prevalence is 5.5%, we get HIV prevalence as only 5x worse than XMRV.
If HIV is a pandemic, then so is XMRV, unless we can PROVE it is harmless, at least as far as risk assessment is concerned. In risk management, you have to look at average and worst case scenarios, not just best case wish fulfilment or authoritative apathy. There is also the issue that while both remove productivity from the work force, HIV kills but XMRV probably kills and disables, putting increased financial pressure on the world. (Yes, we are all aware this is not proven yet, but in risk assessment this is not that important, it just another factor in how seriously to take the risk.)
Here is the wikipedia comment on pandemic, for reference:
A pandemic (from Greek πᾶν pan "all" + δῆμος demos "people") is an epidemic of infectious disease that is spreading through human populations across a large region; for instance a continent, or even worldwide. A widespread endemic disease that is stable in terms of how many people are getting sick from it is not a pandemic. Further, flu pandemics exclude seasonal flu, unless the flu of the season is a pandemic. Throughout history there have been a number of pandemics, such as smallpox and tuberculosis. More recent pandemics include the HIV pandemic and the 2009 flu pandemic.
So I completely support the relevance of Judy Mikovits statements, even if they were taken out of context. This is serious until we can prove it isn't (not the other way around) which makes XMRV research a huge imperative - especially to anyone who wants to prove this assessment wrong! This is underscored by the issue that we can't protect the blood supply yet (most people with XMRV are still giving blood and donating organs) and we have no strong evidence of other modes of transmission. To go with the status quo as default is to say we should use ignorance as a basis for public planning. So if you are pro- or anti-XMRV wtih respect to illness, disability or death, it doesn't matter - research is an extremely urgent priority and needs to be pushed as hard as possible.
I have sent two emails to the Australian minister for health about these issues, the first last year. I take it seriously. I do not email tabloid newshounds about this - I know they will try to fan hysteria (yep, the real deal). Responsible journalism is the name of the game here.
Bye
Alex
A conservative estimate of XMRV prevalence is more like 5% as I have said at length elsewhere, and the worst case is about 10%. Remember that the 3.7% figure is for healthy people. For true prevalence you have to combine healthy and ill prevalence - not easy when we still don't have good data, but much more than 4%!
The following is based on the wikipedia HIV prevalence rates:
HIV prevalence in Australia is 0.1%. This would make worst case XMRV 100x more prevalent (oops, I think my prior post said 1000x, that was an error!), and the likely ratio at 5% XMRV prevalence at 50x. HIV prevalence in the USA is 0.6%, which would make the worst case 16x worse, and the likely case 8x worse.
Lets suppose you only want to use the 3.7% figure. In Australia, XMRV prevalence would be 37x worse than HIV. In the USA, it is 6x worse.
Of course, in Lesotho (South Africa) the prevalence is 28%, so HIV is 7.5x worse than XMRV (using 3.7% XMRV prevalence) ... ahhh, but we don't know how HIV and XMRV interact, or what this does to prevalence rates. If we use an immunocompromised prevalence rate (the only one we have for this) of 10%, then HIV is potentially only 2.8x worse than XMRV prevalence in Lesotho (South Africa), the most HIV country (kingdom in this case) in the world! Doing a little more math to only use the 10% XMRV figure for the 28% with HIV, total XMRV prevalence is 5.5%, we get HIV prevalence as only 5x worse than XMRV.
If HIV is a pandemic, then so is XMRV, unless we can PROVE it is harmless, at least as far as risk assessment is concerned. In risk management, you have to look at average and worst case scenarios, not just best case wish fulfilment or authoritative apathy. There is also the issue that while both remove productivity from the work force, HIV kills but XMRV probably kills and disables, putting increased financial pressure on the world. (Yes, we are all aware this is not proven yet, but in risk assessment this is not that important, it just another factor in how seriously to take the risk.)
Here is the wikipedia comment on pandemic, for reference:
A pandemic (from Greek πᾶν pan "all" + δῆμος demos "people") is an epidemic of infectious disease that is spreading through human populations across a large region; for instance a continent, or even worldwide. A widespread endemic disease that is stable in terms of how many people are getting sick from it is not a pandemic. Further, flu pandemics exclude seasonal flu, unless the flu of the season is a pandemic. Throughout history there have been a number of pandemics, such as smallpox and tuberculosis. More recent pandemics include the HIV pandemic and the 2009 flu pandemic.
So I completely support the relevance of Judy Mikovits statements, even if they were taken out of context. This is serious until we can prove it isn't (not the other way around) which makes XMRV research a huge imperative - especially to anyone who wants to prove this assessment wrong! This is underscored by the issue that we can't protect the blood supply yet (most people with XMRV are still giving blood and donating organs) and we have no strong evidence of other modes of transmission. To go with the status quo as default is to say we should use ignorance as a basis for public planning. So if you are pro- or anti-XMRV wtih respect to illness, disability or death, it doesn't matter - research is an extremely urgent priority and needs to be pushed as hard as possible.
I have sent two emails to the Australian minister for health about these issues, the first last year. I take it seriously. I do not email tabloid newshounds about this - I know they will try to fan hysteria (yep, the real deal). Responsible journalism is the name of the game here.
Bye
Alex
justinreilly
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In a talk at the 2009 invest in me conf. - i think garth nicholson- he talked about how vaccines were the one common denominator in US gulf war syndrome. There was a significantly higher rate of serious disease in nuclear families of pwGWS- autism in the very young and ME in everyone older so this indicates in this pop you get autism and ME from the same cause and which one you get simply depends on age of onset.
alex3619
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Hi justinreilly,
This has been my working hypothesis on this issue for some time, and if you watch closely it is implied by quite a number of researchers, although they wont come out and state it explicity until we have more evidence (presuming that the evidence is there to find).
Bye
Alex
This has been my working hypothesis on this issue for some time, and if you watch closely it is implied by quite a number of researchers, although they wont come out and state it explicity until we have more evidence (presuming that the evidence is there to find).
Bye
Alex