XMRV Article in Chicago Tribune and other papers

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.

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.

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

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

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.

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.

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.

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

I agree 100%

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

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.

?????

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.

This is very significant, imo.

xxxxxxxxxxxxxxxxxxxxxxxxxxxxx

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.

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.

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.

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.