Not really. Saying you have "no recourse" but to "play the autism card" and trying to create hysteria by mentioning AIDS epidemics doesn't seem very responsible from a scientific standpoint. If she keep acting like that she's going to discredit all of us.
XMRV Article in Chicago Tribune and other papers
- Thread starter kurt
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Not really. Saying you have "no recourse" but to "play the autism card" and trying to create hysteria by mentioning AIDS epidemics doesn't seem very responsible from a scientific standpoint. If she keep acting like that she's going to discredit all of us.
ok Alex, fair enough. i have already lost a remaining friend, tho obviously she wasn't a good one. i haven't been treated well & haven't been lucky when it comes to understanding from friends & family so i will admit i tend to see the darkest side of this since i've experienced a lot of it.
Nah, we already live in that world.
When she mentions AIDS, it's a reasonable comparison, after all the implications are enormous. She wont be the only scientist saying this, everyone involved in XMRV research & blood supply issues will have entertained this scenario. The only difference being, that some of them are sticking their heads in the sand. (We looked - nothing there, different method, but nothing there. Phew, keep our heads down and no one will notice the epidemic)
It's not reasonable when there is no proof of anything yet. Even if there were it's not really reasonable, because it doesn't appear that XMRV is spread through the same routes of transmission as HIV. So it's just baseless hysteria at this point, which is how I'm sure the majority of researchers view her comments and actions. It's not helping. If she keeps it up, she's going to discredit all of us more than we already are. How's that.
Esther12
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We can't be sure of the context for what she says, as it seems the quote selection may have been slightly hostile, but I agree that it was a bad idea to provide quotes like those which could be taken out of context. All of the autism stuff made her sound bad, and is another example of the WPI seeming careless with their PR, but it will only matter if we go on going uncertain results for an extended period of time.
I agree. The important thing is to replicate the results, and that's it. If that is done, everything else becomes moot.
Daffodil
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i LOVE that dr. mikovits is putting everything on the line. i see nothing wrong with what she said. desperate times call for desperate measures. if so many are going to try to discredit her by way of underhanded means, she has to use all the ammo she has.
The problem is that what she did isn't "ammo," it's more like one of those gag guns where a flag shoots out of the barrel that says "bang." She just makes herself look like an extremist, and to that extent she greatly weakens her credibility (and ours, unfortunately).
That is a very good point you make. If 4-6% of the general population is already infected, how will anyone know that they are not (and be a bully) before they get tested... Also that high percentage of infected population makes it clear that everyone CAN get infected and that it is in everyone's interest that a vaccine and treatments are found asap.
I agree with Garcia re Mr Kite's earlier post - not only very patronising but incredibly ignorant.
It is when you start talking about AIDS and XRMV in the same breath and cranking up hysteria about an "epidemic."
HIV didn't exist in the population for 20+ years before AIDS. When AIDS hit, and it was found to be caused by HIV, that *was* an epidemic, which in most people's minds is linked to the idea of a contagion. So obviously even if XMRV *is* the primary cause of CFS, the two situations are completely different.
Imo it's irresponsible to start linking AIDS and CFS/XMRV in the public's mind with talk of "epidemics" just because they are both retroviruses. No one really cares about any "epidemic" of sick people who aren't easily contagious. Many barely care about HIV, something they can by all appearances much more easily contract than XMRV. So attempting to draw the parallel was unnecessary and not even really accurate, imo.
My comments weren't ignorant at all, but highly accurate, in fact. She's not helping her case with her hysterics, either over AIDS epidemics or in accusing the scientific research community of gender bias; she is wrong that there is "no recourse" - a comment that plays to this sense of urgency she is trying to create that ignores the usual workings of science - and her moves in general smack of desperation. All that tends to decrease one's credibility.
HIV & AIDS were in the population at about the same time, and how long has XMRV been around? The guess at the moment is that it jumped species in the last 100 years. When they knew about GRID, there was no epidemic, it was several years later when they finally had AIDS, and a retrovirus, HIV, that they then realised they had an epidemic.
If XMRV does cause ME, and occurs in prostate cancer, it will be an epidemic. Again, the evidence at this moment does implicate XMRV as transmittable, similar to HIV, and perhaps more so. At the end of the day, pretty much everything that is know about exogenous retrovirus's comes from HIV research, therefore every scientist is using what they know about HIV to approach XMRV. John Coffin talked about AZT only a few days after the Science paper, and this is a well know HIV drug.
Also, could you stop using the word hysterical, it is inappropriate and rude, and your use of the term is incorrect.
If XMRV does cause ME, and occurs in prostate cancer, it will be an epidemic. Again, the evidence at this moment does implicate XMRV as transmittable, similar to HIV, and perhaps more so. At the end of the day, pretty much everything that is know about exogenous retrovirus's comes from HIV research, therefore every scientist is using what they know about HIV to approach XMRV. John Coffin talked about AZT only a few days after the Science paper, and this is a well know HIV drug.
Also, could you stop using the word hysterical, it is inappropriate and rude, and your use of the term is incorrect.
epidemic is fine with me. comparing to AIDS is fine with me. even talk of autism is fine, i have cousins who have it.
but BIGGEST epidemic & like AIDS Africa but WORSE aren't helpful to me.
i am a supporter, & that sort of talk makes me skeptical. it's a bit over the top i think, but that's just me.
i'm willing to listen, but she made me doubt - which i've never before.
if she said those things, which i hope she really didn't. they seem over inflated.
of course this is very very serious, but isnt' it a little offensive even to those in Africa? really, their plight is worse. is it not?
but BIGGEST epidemic & like AIDS Africa but WORSE aren't helpful to me.
i am a supporter, & that sort of talk makes me skeptical. it's a bit over the top i think, but that's just me.
i'm willing to listen, but she made me doubt - which i've never before.
if she said those things, which i hope she really didn't. they seem over inflated.
of course this is very very serious, but isnt' it a little offensive even to those in Africa? really, their plight is worse. is it not?
You might not like the use of the word, but it's completely accurate: "Behavior exhibiting excessive or uncontrollable emotion, such as fear or panic." Sorry, I didn't write the dictionary. As long as someone displays hysteria, that's what I'll call it.
So you claim that XMRV has been around for decades. Where is the "epidemic?" We might see one, but the general public doesn't. When they hear "epidemic" they think about something easily communicable, something that they can contract through regular contact. That doesn't appear to be the case with XMRV. If it were, a whole lot more people would likely have it by now.
D
DysautonomiaXMRV
Guest
Mr Kite.
In a radio interview in 2009, Dr Coffin postulated XMRV is only around 40 years old.
CFS affects at least 10x the amount of people compared to the HIV epidemic.
(There's the epidemic for 'ya).
If you believe it's irresponsible that people with biologically explained symptoms of pain/immune activation (Inflammatory cytokines) & supression (2-5a Anti Viral Pathway Dysfunction, NKC derangement) & extreme physical and cognitive fatigue that are shared by people with a new human retrovirus - shouldn't consider too if they have this life long incurable virus, then that is for you to think and fine with me. It's your right to do so. It's also my right not to do so.
Most people who are concerned if they are infected with only the third exogenous human retrovirus in the world, however, would probably want to know rather than ignore something that could kill them or their family in later life. This does not constitute any form of over-reaction or hysteria.
Why?
All human exogenous retroviruses cause neuro immune disease, immune supression and cancer.
ME (re-labelled as CFS/Hysteria by military Psychiatrists) is a neuro immune disease with immune supression (NKC dysfunction) and increased rates of cancers reported in patients, and heart failure also.
If one is aware of the huge amount of research into CFS (which I am), It's illogical not to link a newly discovered human exogenous retrovirus, to a disease where 98% of patients test positive with CFS, and where other healthy people around the globe also test positive in 25x less numbers, and where cancer patients test positive, and where immune supressed patients in germany test positive.
If one is not aware, and considers people with CFS are complaining of a syndrome of Chronic Fatigue - without classic symptoms of mitochondrial impairment, no severe chronic pain at rest (lack of inflammation), no cognitive impairment, no cardiac/lung dysfunction at rest or on exertion, no severe exhaustion at rest, no 'flu feeling' (worsened by any activity) & no permanent severe headache (low grade brain inflammation shown in people labelled with 'CFS'), then for sure it's probably possible that XMRV may well not be worth getting hot under the collar about.
There are however millions of people around the world with ME, who were erroneously told they have 'CFS'. For these people who know they are in agony 24hrs a day, who are house bound, and who are so badly cardiovascularly impaired they can't even walk to the mailbox - these people know something is very very wrong. These are the XMRV hunters, on a mission!
I got tested for XMRV, and found out the truth.
I am no longer a puppet of the psychiatric industry with 'CFS' - but a victim of a mouse derived NEW human retrovirus that somehow entered my blood stream without prior notice given. By total chance, I also have all the hallmarks of what retroviruses do to people, and also have XMRV - which by some is being touted as possibly harmless.
Sensibility is rarely foolish and knowing why I am sick, is far better than spending another 20 years not knowing. I used to sit back and wait, and after 10 years I woke up to the reality.
No one is coming to our rescue. Now I know why.
XMRV is grande Dysphagia for the CDC
(Too big to swallow when you can't begin to!).
In a radio interview in 2009, Dr Coffin postulated XMRV is only around 40 years old.
CFS affects at least 10x the amount of people compared to the HIV epidemic.
(There's the epidemic for 'ya).
If you believe it's irresponsible that people with biologically explained symptoms of pain/immune activation (Inflammatory cytokines) & supression (2-5a Anti Viral Pathway Dysfunction, NKC derangement) & extreme physical and cognitive fatigue that are shared by people with a new human retrovirus - shouldn't consider too if they have this life long incurable virus, then that is for you to think and fine with me. It's your right to do so. It's also my right not to do so.
Most people who are concerned if they are infected with only the third exogenous human retrovirus in the world, however, would probably want to know rather than ignore something that could kill them or their family in later life. This does not constitute any form of over-reaction or hysteria.
Why?
All human exogenous retroviruses cause neuro immune disease, immune supression and cancer.
ME (re-labelled as CFS/Hysteria by military Psychiatrists) is a neuro immune disease with immune supression (NKC dysfunction) and increased rates of cancers reported in patients, and heart failure also.
If one is aware of the huge amount of research into CFS (which I am), It's illogical not to link a newly discovered human exogenous retrovirus, to a disease where 98% of patients test positive with CFS, and where other healthy people around the globe also test positive in 25x less numbers, and where cancer patients test positive, and where immune supressed patients in germany test positive.
If one is not aware, and considers people with CFS are complaining of a syndrome of Chronic Fatigue - without classic symptoms of mitochondrial impairment, no severe chronic pain at rest (lack of inflammation), no cognitive impairment, no cardiac/lung dysfunction at rest or on exertion, no severe exhaustion at rest, no 'flu feeling' (worsened by any activity) & no permanent severe headache (low grade brain inflammation shown in people labelled with 'CFS'), then for sure it's probably possible that XMRV may well not be worth getting hot under the collar about.
There are however millions of people around the world with ME, who were erroneously told they have 'CFS'. For these people who know they are in agony 24hrs a day, who are house bound, and who are so badly cardiovascularly impaired they can't even walk to the mailbox - these people know something is very very wrong. These are the XMRV hunters, on a mission!
I got tested for XMRV, and found out the truth.
I am no longer a puppet of the psychiatric industry with 'CFS' - but a victim of a mouse derived NEW human retrovirus that somehow entered my blood stream without prior notice given. By total chance, I also have all the hallmarks of what retroviruses do to people, and also have XMRV - which by some is being touted as possibly harmless.
Sensibility is rarely foolish and knowing why I am sick, is far better than spending another 20 years not knowing. I used to sit back and wait, and after 10 years I woke up to the reality.
No one is coming to our rescue. Now I know why.
XMRV is grande Dysphagia for the CDC
(Too big to swallow when you can't begin to!).
Nothing she has done supports this, read it again.
We just had an epidemic with H1N1, the public generally didn't notice this either.
They don't know how many people have this yet. Sorry, but your comments clearly show that you have consumed only a fraction of the literature that covers XMRV.
I don't need to read it again, it's clear from even the very first reading that she is trying to stir up fear to further her research agenda. She as much as admitted that when she said presenting at the autism conference was her "last resort" (desperation), and that, in her words, "unless we do something now this could be the worst epidemic in U.S. history. Our continent will be like HIV Africa only worse!"
"Unless we do something NOW." Complete with exclamation points. The implication is that we don't have an epidemic now, but that if we don't ACT NOW! we might have one. If that's not designed to stir up fear, I don't know what is.
The public absolutely noticed the H1N1 scare. It was front and center on the news like every night for weeks, there were shortages of vaccines causing all kinds of grief, and the CDC/WHO and/or others were talking about a massive pandemic. That didn't really pan out, either, and so the public attention drifted to other things. And that's a flu virus that by all accounts is easily communicable, and that actually killed a number of people. XMRV is a completely different agent with a completely different profile.
Esther12
Senior Member
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Really?
That's pretty different from what I've heard people say. Can you remember where you read that? It would be interesting to see. Ta.
I agree with a lot of Kite's concerns, but I also think he's been a bit unfair in taking Mikovit's quotes at face value. We all know how journalists are pushing to make a story seem as dramatic as possible. It does seem that Mikovits is poor at restraining herself, and often gives them tasty quotes to take out of context, but when I've seen/read her speak at length she seems to add in the provisos and notes of caution that are so important.
The fact this keeps happening is a problem though, and I worry that some of the WPI's keener supporters are egging them on to behave in a counter-productive manner.