XMRV Article in Chicago Tribune and other papers
- Thread starter kurt
- Start date
I believe most of the quotes came directly from her emails. If anything, one would expect more restraint there than when just talking off the cuff to a reporter. In any case, it doesn't really reflect well imo on the state of her research.
again i said AIDS Africa, but i'm not gettin somethin i guess. as i sit in my very comfortable air conditioned home with my dishwasher going & a computer at my disposal, a TV a car to get to doc appts (inadequate as they may be), a Roomba - haha, clothes, all the food i need, etc. i just dont' see how i have it worse than those in Africa.
& yes, i am here - i get to live to fight another day. i get a teeny bit of hope. i dont' have to leave my husband & family & children (cats - ha!
) & friends just yet.
that is no small thing.
& yes, i am here - i get to live to fight another day. i get a teeny bit of hope. i dont' have to leave my husband & family & children (cats - ha!
) & friends just yet. that is no small thing.
MODERATOR - everyone please keep the discussion, debate, and disagreement at a civil level appropriate for the forum.
It is unrealistic to expect we will all have the same opinions and improbable we will change one another's views with strongly-worded posts. There are some clearly valid points being made here, I think on both sides, but let's make them diplomatically please.
It is unrealistic to expect we will all have the same opinions and improbable we will change one another's views with strongly-worded posts. There are some clearly valid points being made here, I think on both sides, but let's make them diplomatically please.
What happened to Goddard perhaps provides a lesson for today. During the 1920's Goddard's theories were the subject of much public ridicule (not just from the New York Times). Goddard was retiring and rarely took on his public critics. As a result, he found it difficult to get funding for his research and he had to run his rocket tests on a shoestring. When he did get some funding from the Guggenheim Foundation in the 1930's, he took his research to Roswell, New Mexico - both for safety reasons and so he could work far away from public scrutiny. He worked there in relative obscurity (although his earlier work had been well-studied by German scientists). In fact, his work was so unappreciated that, by the time of the outbreak of WWII, the US military saw little value in rockets as weapons. Meanwhile, by the end of the war, Germany had developed the V2.
The moral of the story seem to be “Take on your critics. Don’t hide your light under a bushel. If you don't show that you believe in yourself, why should anyone else believe in you?”
I think we are actually very lucky to have someone with this type of personality in Dr. Mikovits. A lot of other researchers would no doubt wither under the type of criticism she’s come up against. Yes, she may ruffle some feathers (heavens!), but if you don’t want to get into the arena and fight for your ideas you can expect to wait 49 years until they become commonplace. Then you'll get the retraction - - - in Goddard's case, 24 years after his death.
The moral of the story seem to be “Take on your critics. Don’t hide your light under a bushel. If you don't show that you believe in yourself, why should anyone else believe in you?”
I think we are actually very lucky to have someone with this type of personality in Dr. Mikovits. A lot of other researchers would no doubt wither under the type of criticism she’s come up against. Yes, she may ruffle some feathers (heavens!), but if you don’t want to get into the arena and fight for your ideas you can expect to wait 49 years until they become commonplace. Then you'll get the retraction - - - in Goddard's case, 24 years after his death.
“Every vision is a joke until the first man accomplishes it; once realized, it becomes commonplace.”
-Robert Goddard
I guess I'm going to be the odd man out here again, as I agree with much of what Mr. Kite says, and echo Serenity's concerns, but also agree with some of the other comments. Lots of good points made.
I respect Dr. Mikovits as much as anyone here, but I think that perhaps sometimes her passion sometimes gets a little overheated at times. I'm glad she's passionate about CFS/ME, but I think it might sometimes backfire if she doesn't choose her words more carefully. I hope it doesn't...but it could.
Alex had a point where he said that (paraphrasing) XMRV is hard to catch, not like the flu, so comparing it to the overblown media coverage of the H1N1 flu of last year (that was potentially supposed to kill possibly millions) doesn't really ring true for me as well. If it could be called an 'epidemic', it's definitely not in that same boat, especially regarding the public's perception.
Comparing it to the HIV epidemic also doesn't seem right to me, for the reasons Mr. Kite has mentioned, but also because of comments that I believe came from the WPI and others (and also perhaps Gerwyn?) that XMRV replicates very slowly and in different tissues/cells than HIV.
I agree with Esther when she said that while perhaps some of Mikovits quotes were rearranged, nevertheless, "it was a bad idea to provide quotes like those which could be taken out of context." Personally, I think it didn't help her or the WPI, to send those emails.
Natassa: "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."
Good points, but this to me again suggests that it may not be the 'puppet master', that perhaps genetics, or other factors/triggers (probably multiple) may be involved. But it also means that every single person, healthy or not, would need to be tested for XMRV, before giving blood. That won't happen until there's solid proof that it causes disease in the vast majority of those with XRMV.
Dysatonomia: "CFS affects at least 10x the amount of people compared to the HIV epidemic."
You're a lot smarter than me, but I'm curious where you obtained this statistic (for reference).
"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..."
It was my understanding that roughly 10x more healthy people in the US (extrapolating the 3.7% stat in the Science study) tested positive (10-12 million healthy folks in the US population compared to 1-2 million estimated ME/CFS patients).
And finally, I don't understand your final statement:
"No one is coming to our rescue. Now I know why."
Aren't there dozens of studies going on now around the world? Or at least a dozen?
And lastly, what about the DeFreitas retrovirus? If that was indeed such an important finding as conveyed by Hillary Johnson for decades, etc., and we know that the WPI says XMRV is not the same retrovirus, why isn't ANYONE, including the WPI, following up on Elaine's work and trying to replicate her findings? For all we know it could be just as important as XMRV...
ETA Forbin's comment: "The moral of the story seem to be “Take on your critics. Don’t hide your light under a bushel. If you don't show that you believe in yourself, why should anyone else believe in you?”
Good point.
I respect Dr. Mikovits as much as anyone here, but I think that perhaps sometimes her passion sometimes gets a little overheated at times. I'm glad she's passionate about CFS/ME, but I think it might sometimes backfire if she doesn't choose her words more carefully. I hope it doesn't...but it could.
Alex had a point where he said that (paraphrasing) XMRV is hard to catch, not like the flu, so comparing it to the overblown media coverage of the H1N1 flu of last year (that was potentially supposed to kill possibly millions) doesn't really ring true for me as well. If it could be called an 'epidemic', it's definitely not in that same boat, especially regarding the public's perception.
Comparing it to the HIV epidemic also doesn't seem right to me, for the reasons Mr. Kite has mentioned, but also because of comments that I believe came from the WPI and others (and also perhaps Gerwyn?) that XMRV replicates very slowly and in different tissues/cells than HIV.
I agree with Esther when she said that while perhaps some of Mikovits quotes were rearranged, nevertheless, "it was a bad idea to provide quotes like those which could be taken out of context." Personally, I think it didn't help her or the WPI, to send those emails.
Natassa: "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."
Good points, but this to me again suggests that it may not be the 'puppet master', that perhaps genetics, or other factors/triggers (probably multiple) may be involved. But it also means that every single person, healthy or not, would need to be tested for XMRV, before giving blood. That won't happen until there's solid proof that it causes disease in the vast majority of those with XRMV.
Dysatonomia: "CFS affects at least 10x the amount of people compared to the HIV epidemic."
You're a lot smarter than me, but I'm curious where you obtained this statistic (for reference).
"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..."
It was my understanding that roughly 10x more healthy people in the US (extrapolating the 3.7% stat in the Science study) tested positive (10-12 million healthy folks in the US population compared to 1-2 million estimated ME/CFS patients).
And finally, I don't understand your final statement:
"No one is coming to our rescue. Now I know why."
Aren't there dozens of studies going on now around the world? Or at least a dozen?
And lastly, what about the DeFreitas retrovirus? If that was indeed such an important finding as conveyed by Hillary Johnson for decades, etc., and we know that the WPI says XMRV is not the same retrovirus, why isn't ANYONE, including the WPI, following up on Elaine's work and trying to replicate her findings? For all we know it could be just as important as XMRV...
ETA Forbin's comment: "The moral of the story seem to be “Take on your critics. Don’t hide your light under a bushel. If you don't show that you believe in yourself, why should anyone else believe in you?”
Good point.
D
Hi Danny B. Well.... I can't possibly be smarter than you or anyone on here as I never finished school as I was washed up with this illness by age 16. Additionally I would imagine I am at the lower end of intelligence compared to many people on this forum who are far more capable in all areas of their lives. In my defence though, before my illness - I was quite normal (allegedly) and could still remember how to spell. I read a post by someone the other day calling themselves (in some ways) a child due to being incarcerated in their homes for decades. I am a teenager too really. Just an unfinished adolescent - now looking more like Mr Burns from the Simpsons (with the same knowledge of current fashion trends) instead of what I did look like - Paul, from The Wonder Years. So... jaded and yellow it is.
The 10x HIV figure? This is from comparing the number of people diagnosed with HIV with the numbers of CFS. (The numbers are 10 fold in CFS). I know in the UK, this is the figure.
I said no one is coming to our rescue as no XMRV replication study has been proposed by the CDC, never mind funded or started, also as for me this started near 20 years ago, if not before. Approaching a year on from XMRV this is somewhat bizarre I feel. (Considering the huge furore over what happened with the CDC ignoring HIV for 2 years), it would seem a big mistake to repeat this again. I additionally made that comment, as in my country they have announced XMRV doesn't exist. (This is not really a hopeful statement in terms of being rescued!!!!!). Lastly, my doctor recently visited my home and told me not to talk about XMRV now I am positive, and instead tried to sell me CBT. She smarted when I had the bravery to ask her.. ''CBT for retrovirus''?
Elaine DeFreitas should answer (if she can speak) those questions you ask. I have no idea why no one takes an interest in her work!!! I'm just a lonely high-maintenance blob in my bedroom on a laptop who knows and can influence nobody other than impersonating my dead cat's ability to get in people's way and increase the food bill.
Why the CDC said they ''can't afford the plane ticket'' to visit Elaine DeFrietas I would love to know, it's somewhat of a put down - or the spokesperson has aerophobia.
Maybe someone in the USA can interview her one day? The furthest I can travel is my bathroom unfortunately, and not Club Class!
The 10x HIV figure? This is from comparing the number of people diagnosed with HIV with the numbers of CFS. (The numbers are 10 fold in CFS). I know in the UK, this is the figure.
I said no one is coming to our rescue as no XMRV replication study has been proposed by the CDC, never mind funded or started, also as for me this started near 20 years ago, if not before. Approaching a year on from XMRV this is somewhat bizarre I feel. (Considering the huge furore over what happened with the CDC ignoring HIV for 2 years), it would seem a big mistake to repeat this again. I additionally made that comment, as in my country they have announced XMRV doesn't exist. (This is not really a hopeful statement in terms of being rescued!!!!!). Lastly, my doctor recently visited my home and told me not to talk about XMRV now I am positive, and instead tried to sell me CBT. She smarted when I had the bravery to ask her.. ''CBT for retrovirus''?
Elaine DeFreitas should answer (if she can speak) those questions you ask. I have no idea why no one takes an interest in her work!!! I'm just a lonely high-maintenance blob in my bedroom on a laptop who knows and can influence nobody other than impersonating my dead cat's ability to get in people's way and increase the food bill.
Why the CDC said they ''can't afford the plane ticket'' to visit Elaine DeFrietas I would love to know, it's somewhat of a put down - or the spokesperson has aerophobia.
Maybe someone in the USA can interview her one day? The furthest I can travel is my bathroom unfortunately, and not Club Class!
Agreed! The quotes sound like she was trying to put words in their mouths and then got their responses- agreeing, kind of agreeing or cedeing a point and then made it sound like they were coming out asserting that view, especially with Coffin. (Dr. M does sometimes say things that can be blown up and taken out of context to make her seem unreasonable imo).
Mr.Kite
So the WHO overreacted, when the last time this happen about 50million people died?
Look, everyone has a different opinion on how to go about getting important information about CFS, and its association with XMRV, out into the word. That's fine. However, referring to Mikovits as hysterical is out of order, especially when her comments are echoed by leading retrovirologist's.
So the WHO overreacted, when the last time this happen about 50million people died?
Look, everyone has a different opinion on how to go about getting important information about CFS, and its association with XMRV, out into the word. That's fine. However, referring to Mikovits as hysterical is out of order, especially when her comments are echoed by leading retrovirologist's.
No, I said the media overreacted. But it's possible that WHO overreacted, also. 50 million people didn't die from H1N1, did they?
Mikovits' comments were a little bit hysterical, in my estimation. I'm sure that conclusion is shared by many in the scientific and research communities. Sorry that you think otherwise and can't seem to let it go.
Mikovits' comments were a little bit hysterical, in my estimation. I'm sure that conclusion is shared by many in the scientific and research communities. Sorry that you think otherwise and can't seem to let it go.
I said 50 million the last time. As for the media, well it depended on which media you watched/read.
Other people have posted on here also, if they add a comment today or tomorrow, or in another week, will you say this. Sorry, but your use of the word hysterical is only being used to demean and mock.
Other people have posted on here also, if they add a comment today or tomorrow, or in another week, will you say this. Sorry, but your use of the word hysterical is only being used to demean and mock.