XMRV Article in Chicago Tribune and other papers

[jeffrez]

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.

Sorry if that's your reading of it. My reading of the Mikovits' comments is that they are hysterical, the definition of which I even posted, and to which definition the comments conform. Again, I didn't create the language, I only try to use it accurately. If she doesn't want her comments characterized that way, she shouldn't make them that way. Pretty simple.

 

[V99]

She is speculating, as Goff & Coffin have done, and many more. This is how they progress research, they build a hypothesis. I agree, with how others have viewed the article, that the reporter did their job and fitted the comments to the story they wanted to tell.

 

[jeffrez]

She is speculating, as Goff & Coffin have done, and many more. This is how they progress research, they build a hypothesis. I agree, with how others have viewed the article, that the reporter did their job and fitted the comments to the story they wanted to tell.

The comments on their own would be hysterical. You can't really blame what she actually said on the reporting.

Stating hysterically that "if we don't do something NOW!" the "epidemic" is going to be "worse than AIDS in Africa!" is not a scientific or medical hypothesis to "progress research." It's hysterical rhetoric apparently designed to stir up panic and fear, as she makes clear is her objective when she talks about "last resorts" and hysterically presenting information at an autism conference, the impropriety of which even SHE admits could end her career. And it probably will if she keeps it up. She's right about that, at least.

 

[Esther12]

Even if the quotes, as they are presented in this article, could fit the definition of 'hysterical', that doesn't mean that we can say Mikovits is taking a hysterical approach herself.

If there was a lengthy piece written by Mikovits which created the same impression as her quotes from this article, then I would be more concerned. As it is, I think it's more likely that she's just careless about how she communicates with journalists. This is still worrying, but I think it's unfair to talk about her being hysterical based on a few short quotes in an article written by a somewhat hostile journalist.

 

[usedtobeperkytina]

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.

“Every vision is a joke until the first man accomplishes it; once realized, it becomes commonplace.”​

-Robert Goddard​

I agree. History will determine whether the concern is legitimate or an overreaction. And the history hasn't been written, yet.

I actually was wondering if DeFreitas had taken a different approach, call it the Mikovits alarm, would things have been different? The point Mikovits is making is that the research is not responding with the urgency the evidence is calling for. I am confused by the thought that no one is doing anything. I thought she had at least eight working with her on research. But I guess she thinks more is called for. And isn't CDC doing something? Maybe she knows CDC has finished study but are holding back. If that is the case, she may be trying to put them into a corner to act.

Whatever, strategy or real concern based on results she sees in the lab, she is confident and will either be a hero or go down with egg on her face. We also need to take into consideration that she has been continuing the research and she has seen more than what has been published. Has WPI been published since October? If not, think of all the other studies they have been doing and what she has learned from that, published or not.

Yeah, I know it isn't recognized until published and validated. But that doesn't mean she isn't seeing evidence that others haven't seen yet.

Tina

 

[Robyn]

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[V99]

There is no way of knowing what Mikovit's said before or after this, so we have no context, also the quote may be wrong. If we don't do something now it may be worse than AIDS in Africa, may be refereeing to the number of people infected, we have no way of knowing because it appears in an article, and has been reduced down to fit the story. When she talks about last resorts, it's more likely that without saying something, XMRV CFS will not be explored fully, and we may miss finding a crucial part of the puzzle. As for the part about the end of her career, well CFS has ended other careers, I think she mean she will see this though, until we know the truth about XMRV, either way.

 

[V99]

Robyn

I completely agree, but I don't think Mikovit's is saying that this is worse than the suffering and neglect that people with AIDS experience, I think she means the number of diseases and number of those infected.

 

[Esther12]

Robyn

I completely agree, but I don't think Mikovit's is saying that this is worse than the suffering and neglect that people with AIDS experience, I think she means the number of diseases and number of those infected.

Yeah - that would be a sensible, generous interpretation. But the way the quote's used in the article does make Mikovits sound unreasonably alarmist. The WPI should really try to stop giving their critics this sort of ammo.

 

[V99]

It's such a fine line, advocating.

The scientists who are only interested in the facts will want to explore the connection. Those who think we are all crazy, want it shut down quick. Therefore these articles wont have much of an impact, but a research paper may.

Yeah - that would be a sensible, generous interpretation.

That's true, I am trying, but there really is no way of knowing, unless we ask her ourselves.

 

[justinreilly]

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.

I agree 100%

 

[Robyn]

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[jspotila]

My comments aren't directed at anyone they are just a statement of how I feel about the situation. Having a deadly disease like AIDS would be bad to have especially in Africa due to the lack of all kinds of resources. People can however live with HIV for quite awhile now with medications and function in life. Some of the sickest with CFS aren't able to get out of bed or use the computer, or even get financial or medical help. England would be the best example. I fortunately am able to still work to continue supporting myself and receive medical coverage. Each year get's harder and harder. For many there hasn't been any help for what is needed while living with this illness. There has been even less hope for a better future. Until now

I am not dismissing any of the arguments made on either side here. But I think it is unnecessary, and perhaps even harmful, for us to go down the road of "my illness/experience/situation is worse than this other group's disease/experience/situation" because it could pit one disease community against another. People with HIV/AIDS suffer. People with CFS suffer.

I see a dangerous and slippery slope in saying that people in Africa with HIV are better off than we are, for two reasons. First, HIV in Africa (or Asia for that matter) is an extraordinarily complex problem medically/socially/economically and I, at least, do not have the knowledge or competence to truly make a comparison and strong analogy. Second, arguing on this forum about who has the leakiest boat is not going to plug any leaks. As a PWC, one of the things I crave most is respect. I assume that people with HIV - no matter where they live - want that too.

I would like us all to have compassion for one another, no matter what illness we have.

 

[justinreilly]

...
The public absolutely noticed the H1N1 scare....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.

?????

some of what you've been saying sounds needlessly provocative, almost trolling for luls. Obviously, that's not kool. It is a waste of energy for people to respond to this kind of baiting imo.

 

[justinreilly]

Coffin quotes.

Potential to cause disease
So the other striking thing is the very close relationship of this virus to xenotropic MLV an endogenous virus of inbred mice. As was noted the pathogenicity of xenotropic MLV has not been studied in mice, for an obvious reason, and that is this virus does not infect mice. But closely related viruses have been very important pathogenic models in virology for cancer, for immunodeficiency disease and for a variety of neurological diseases. So the potential pathogenicity of this virus at least in a host that it can infect should not be underestimated.

This is very significant, imo.

 

[Robyn]

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[jeffrez]

?????

some of what you've been saying sounds needlessly provocative, almost trolling for luls. Obviously, that's not kool. It is a waste of energy for people to respond to this kind of baiting imo.

How ironic to accuse me of "trolling" in a thread where the subject is Mikovits obviously trolling the entire scientific research community with her hysterical comments. Speaking of a waste of energy, I'm really tired myself after having to respond to all the poor reasoning and "defense of a dream" perspectives not based on anything definitively proven, not to mention the petty nitpicking in the other thread.

Characterizing anyone who expresses a different POV as "trolling" is obviously what's not "kool." I think you probably should be reported for that kind of baiting and personal attacking against a board member instead of discussing the topic.

 

[justinreilly]

Here's Goff take again, from CROI.
[video=youtube;R3f9MPfIpls]http://www.youtube.com/watch?v=R3f9MPfIpls[/video]

I had to laugh- the host starts with XMRV is "probably meaningless" and ends with an admonition to the audience not to be 'alarmist' that probably the 'CDC is monitoring the situation'. The deadpan delivery just makes it funnier. Have submitted it to Tosh.0 but they didn't think it was as hilarious as I for some reason.

 

[justinreilly]

How ironic to accuse me of "trolling" in a thread where the subject is Mikovits obviously trolling the entire scientific research community with her hysterical comments. Speaking of a waste of energy, I'm really tired myself after having to respond to all the poor reasoning and "defense of a dream" perspectives not based on anything definitively proven, not to mention the petty nitpicking in the other thread.

Characterizing anyone who expresses a different POV as "trolling" is obviously what's not "kool." I think you probably should be reported for that kind of baiting and personal attacking against a board member instead of discussing the topic.

Honestly, that was my opinion and wasn't meaning to bait you. No, XMRV is not proven to be associated with ME according to scientific protocol. But the circumstantial evidence of retroviral causation, at least in part, collectively form a very solid case in my lay opinion.

I do think Dr. M says some things I think are ill advised. She also says things that are very important for us that virtually no other scientist or clinician will. I am again honestly not trying to offend you, but I don't think that some of your comments hold up when viewed in light of all available information. I think calling her hysterical is just unwarranted and needlessly inflammatory and that's what trolling is. Obviously, i can't see inside your head, that's just my impression.

 

[justinreilly]

...
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...

Well, some people are coming to our rescue, thank god. But the fact that CDC and NIH (and NCI) are not funding any extramural research into XMRV and ME is criminal- and is just a subset of the fundamental problem that we get just $5M in a very good year from NIH and continue to have garbage Reeves criteria psychogenic studies coming out of CDC.

A lot of study needs to be done on DeFretias RV like yesterday, or more accurately 20 years ago. I can understand that neither WPI nor anyone else wants to touch this with a 10 foot pole considering what CDC and NIH did to destroy her reputation, not to mention the tremendous opposition they're under for having the temerity to find (even in the august company of Ruscetti and Silverman) a recognized human retrovirus in ME.

Once an XMRV confirmation study comes out I feel we really need to push hard for funding on DeFreitas RV too.