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Anti-XMRV Blog -New post

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Daffodil, Jun 14, 2010.

  1. Cort

    Cort Phoenix Rising Founder

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    That's quite an accusation! If you're going to state something like that please provide evidence for it or remove or modify your statement. My understanding is that Jennie asked that we not act the same way that ERV does not that she was defending ERV's statements.

    If you think that we should be able to act that way towards ERV on this Forum that's one thing;but this is another issue entirely.

    Thanks
  2. Mithriel

    Mithriel Senior Member

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    They keep dishing out antidepressants to people with CFS and there are more and more side effects being reported about those.

    So many treatments have been dished out to us over the years with very little justification that if you know you are XMRV positive and have a very bad quality of life then ARVs seem a good way to go especially under medical guidance. They have already undergone safety trials and the side effects are well documented.

    I dislike the implication from certain quarters that we are like children who can't be trusted to make informed decisions. We are castigated for not taking our medicine when it is their choice even when a reading of the literature shows how dangerous it is.

    As for waiting for a replication study to be done - that would be fine if anyone were actually doing one. The people in power do not have the will to help us, it is cheaper and easie to treat us as having a trivial psychological problem.

    Since the invention of CFS we have been forced to be our own doctors (literally in many cases as doctors have refused to treat us). To turn round now and insist we must wait for the medical profession to pronounce on our case is too late in the day.

    Mithriel
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Agreed!

    I do think there are replication studies- part of the CDC studies (although i think that given their track record, any CDC study should be rebuttably presumed to be invalid), the Glaxo study and maybe others? haven't really been following it that closely.
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Rebecca- Just off the top of my head- We could probably have a winnable case against Smith and scienceblogs.com (and U of O if it were providing resources, which i assume it is too smart to do); whether it would be worth it is another question- probably no. Nothing wrong with saving content put up on the internet and it seems very unlikely she would have a meritorious claim of harassment if this info was presented to potential employers. the tort of interference with business should be considered but don't really think that would be a big problem/ meritorious. Just discuss with me before you proceed if you want.

    Maybe remind her now of the potential future consequences of publishing misinformation on science and defamation of us. This would deter a sane person, but probably not her, but it's probably worth a try.
  5. Impish

    Impish Senior Member

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    This is an excellent point and one which ERV doesn't seem to understand. The reason people with CFS are pissed off or their family or friends is that this isn't some sort of intellectual exercise for us. It is our lives. It has real concrete effects on us.

    She keeps saying it is all about the virus and she doesn't care about the patients which is completely utterly screwed up point of view.

    As a researcher staying objective is important but that doesn't mean you lose your humanity. ERV raises valid points or concerns sometime but does it in such a way that the value in her potential contribution is lost.

    People like this need to be fought or argued with because it does have an effect on the environment in which people with CFS live in. At one time racial slurs, sexual orientation and other issues were WAY worse than they are now. Our culture changed because people fought against it.

    It is NOT ok to say or infer that people with CFS don't have a disease. It is not ok to ignore them. It is not ok to make suggestions about treatments or anything if you don't have the background or understanding necessary to actually have a fully informed opinion.

    After thinking about it I am going to argue with ERV again. I just can't stand by and let comments like those stand unchallenged.
  6. akrasia

    akrasia Senior Member

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    Originally Posted by jspotila
    You have misread or misrepresented my posts. I have not defended ERV's defamation of anyone.

    ===============================================
    Explicitly, no. But you have not given any argument about why ERV should be seen as a legitimate interlocutor for us and the WPI. The only thing you can say for ERV is that she has a soapbox, earned not by insight but by arrogance and a foul mouth. Do you really want this community to wade through oceans of s#*t to retrieve pennies?

    If ERV had evolved a view that made any sense and was not being heard, you might have an argument. But she hasnt. Given that, using her as a way of criticizing the WPI, the Science article, and its ramifications, seems very suspect and invites a reading that casts doubt on your motives.
    -----------------------------------------------------------------------------------------------
    When someone like JSpotila takes a creature like ERV seriously this can seem like a de facto endorsement, unintended or not, precisely because in order to address ERV's rants you have to visit her site and we know what that entails. What is there that merits JSpotila's desire to "discuss" the science. If Betty Bland was offering what ERV was you wouldn't pay it a second glance.
  7. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Skipped to the end of this thread past a couple of pages, so forgive me if this point has been made.

    The manner in which you express an opinion can reveal the level of evidence you have for your position. If you have strong evidence, you present that evidence, and reason based on that evidence, knowing it is strong enough to prove your point. If you don't, you resort to emotionally charged attacks or exaggerations thinking the stronger the tone of your words, the stronger your argument will be seen. Ironically the opposite is true. The more emotionally charged attack words you use, the less credible you appear to be.

    So let her do her thing. Respond if you want, expose her if you want, but do so in a way that provides evidence, do not respond in kind or your position will be seen as just as weak.

    And by the way, the same holds true for the extremists CFS patients who want to slash and burn the psycho folks. Expressing a desire that they be ruined does not lead to credibility of your position on the issue. Let's use reason, folks. It is the most powerful weapon there is. It will show our position is strong and the name-callers are weak.

    And Martlet, I have to say I disagree with you. Harassment is not gathering information about people and documenting it. Heck, some people do that for a living. For example, private investigators, journalists, detectives, etc.

    Giving that information to a prospective employer is not harassment as long as the information provided is true. If it isn't, then you are looking at a defamation lawsuit. Trust me, I have experience with these things.

    She is not hiding her identity. Someone earlier had shown she has a Facebook page, she has spoken at debates, she puts her information on a blog. Easily, someone found a video which clearly shows her identity. She has made herself a limited purpose public figure (legal term) and the issue of her posts is a matter of public concern (another legal term). So information distributed about her own comments to anyone is not harassment. She already put those comments out for public consumption.

    Now if it is continuous by one person to the prospective employer or current employer, etc, that person or company might call it harassment. Continuous phone calls from one person after being told not to call any more could be harassment. But sending information in the mail that doesn't have any threats is not harassment, just maybe an aggravation, like junk mail. The key is whether it is true.

    To be stalking, there must be an implicit or implied threat, depending on the state where it occurred. The person must feel a high level of fear. To be afraid that a future employer might come to know of things you posted on the Internet won't stand up to stalking.

    But, Martlet being careful is good advice as far as people making sure the information they plan to pass on is accurate. In fact, if someone wanted to set up a Web site right now exposing some information about ERV, that would be covered under the First Amendment of free speech. In fact, even personal information, if someone chose. We see information about public figure's personal lives all the time, without their permission. And as I said before, she has made herself a public figure on this issue (CFS, WPI and retroviruses). Just be sure it is accurate.

    Tina
  8. Esther12

    Esther12 Senior Member

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    I didn't think jspotila defended ERV's post. I thought she was just saying that we should avoid going over-board with personal attacks in reply.

    Ummm... there's a lot that could be said about the ERV post, but I think I'll leave it for now. I think a lot of people share that sort of disinterested response to the suffering of CFS patients though, and infuriating as it may be, it's best to learn to control your emotional response if you want to try to change their mind through discussion and debate. If people want to vent, that's fine and I don't think their should be a restriction on that, but try to remember that it will have in cost in terms of how you're perceived.
  9. CBS

    CBS Senior Member

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    Very well said!
  10. Frickly

    Frickly Senior Member

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    I am sorry Martlet, I try to stay out of all this conflict but just remember when the rheumatoligist blogger ,in Psychology Today no less, called the CFS patients "terrorists of health". I was really ticked off as were alot of people. Many of us discussed this in length and posted messages on his blog. I had my whole family send complain about this article because it was so offensive. I wanted this guy to stop blogging and his comments to hurt him professionally. Does that mean I am not civil? Well....so be it. I am sorry but it really ticks me off that I am not allowed to discuss bloggers, docs, ect who are attacking us so viciously and standing in the way of science and good treatments. You posted that we may be in for a harrassemt suit. I am sorry...but that is ridiculous. This blogger is throwing obcenities at everyone, including the gay community. Civility? If she can't stand the heat then she needs to get out of the kitchen. I think we are being very civil, considering our situation. Jeez....I am sorry....I don't get it and think I am too irritated to comment further. Yes...you were defending her and I will not say anything more about it.

    I think Hillary Johnson just helped me make my point.
    http://oslersweb.com/blog.htm?post=710020
  11. Advocate

    Advocate Senior Member

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    Martlet's Post #84

    Martlet, you might not be aware that many people who said they have ME/CFS tried to have rational discussions with ERV on her blog site. And do you know what she said to them? She said, "Get your own f***ing blog!" (She spelled the word without using asterisks.) So your suggestion didn't work.
  12. Gert

    Gert

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    ERV

    I want to make some comments about ERV that I have tried to post to her blog but have not been published.

    1st Erv is one of the only bloggers on science blogs who does not reveal their identity. Erv says Erv is female but we have no proof of this.

    2nd - The identity thing could be very important i.e. Erv could be an associate of Myra McClure, Simon Wessley or even be one of these researchers. Erv could be connected to the psycho lobby. No matter what Erv suggests about her/his identity we have no idea. As someone who spouts about the need for evidence constantly this person expects us to accept the explanation of identity given to us.

    3rd - I find it odd that ERV's posts are always at or near the top of Google searches. Google is a for profit enterprise and a member of the CFR ( council for foreign relations ) which is highly connected to the international Bankers and their attempts to get a global currency which would lead to a global banker owned government. These people are behind demands from the privately owned World Bank for countries to introduce austerity measures in countries affected by the banker created depression. The world bank wants to privatize everything and puts a lot of pressure on countries to put their public utilities in private hands. I can post some links on CFR and the world Bank if anyone is interested.

    The corporations spend millions on propaganda and lobbying for their
    own interests in the health area. This sort of influence is all over the net and we should all be very suspicious of someone like Erv who does not give their real name yet constantly gets top position in the Google search page.

    The Israelis have people posting on blogs putting what they want people to believe into the mix as if it were avereage people making comments on blogs. They dont tell you who they are, and there are no doubt many many other countries and corporations ect trying to influence the outcome of all sorts of events through propaganda.

    Anonymous Erv with the help of a top Google listing constantly attacks Judy Mikovits who he says should not be speaking but just shutting up as Erv works tirelessly to help ensure research funding for Cfs XMRV dries up and to force the Whittemore Peterson institute into financial difficulty thus making it impossible for them to continue research.

    There are questions around prostate cancer link also but Erv isn't interested.

    I think Google should be taken to task about Erv's position. They must be told that a lot of cfs patients commit suicide because they cannot get help when they are severely ill and their families don't believe them or maybe they have no family. Yet google continually put the unnamed ERV at the top of the search page. This could lead families to not support their sick CFS members and suicides could be the result. I have never seen attacks on the sick like this tolerated for any other illness.
  13. Esther12

    Esther12 Senior Member

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    1) There's a video of ERV earlier in this thread.
    2) It could be a conspiracy, but it really doesn't seem like it to me.
    3) ERV has covered XMRV a lot. CFS patients are desperate for news and probably using google a lot. Her blog always gets linked to from here. Do you know a bigger site which has posted more about XMRV? This is how you get high up google rankings. It's worked for her, and she's probably got a lot of extra traffic this way (which could be why she's covering it - more likely than a link to Wessely imo).
  14. Gert

    Gert

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    Thanks Esther

    I should have read the whole thread but came in from a link. You are most likely right about google. I feel abit silly after reading the rest of the thread but like many of us reading is often more than I can manage. I've made myself quite ill reading the last few pages and will need to lye down for a while.
    We still cant be sure of Ervs connections and she admits she is paid by science blogs to write the Blog. Science blogs claims they don't tell people what to write and we only have their word on that. Be interesting to look at their connections to health Insurers and the pshyco CFS Doc's. We should check her identity. I've had CFS for 35 years now and I remember reading with hooror about 20 years ago about an article in a major US News Paper where the journalist came out strrongly that CFS was getting to much money for research and that we should just stop looking for a cause. 20 years on and my life is still a lonely hell of pain. I don't have support and the next few months could spell the end of me really so this ERV could hold things up enough to finnish me off for good.

    I guess sufferers who have support or money just don't really get that as they can continue if they are not too ill and this might be the divide between people on this blog who don't really care about Erv and others who see her as a threat to their very existance.
  15. Esther12

    Esther12 Senior Member

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    I understand Gert. Sorry if I was a bit blunt in my reply (looking back, I was - thank you for your reply).

    I have actually been rather luck in a number of ways over the past year (after a few really difficult years) and that probably does allow me the luxury of being a bit more detached from all this. It's hard to stay calm when you're feeling desperate. I hope things turn out okay for you.
  16. dipic

    dipic Senior Member

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    Gert - I suggest you read what she is saying; truly read it. It's hard, with all the venom, but she actual brings up very valid points.

    Please don't go the conspiracy route - most of the people there already think we're nuts enough (or at the least very irrational and/or ignorant people.)

    People on here are quick to dismiss her without actually reading and trying to see what she is saying and where she is coming from (granted, she doesn't make it easy with her rude and childish demeanor.)

    Don't let your bias cloud your ability to think rationally or make assumptions or jump to conclusions without without doing some research. This isn't aimed directly at you, Gert, and I apologize if I coming off insulting in anyway. I just think a lot of people form an opinion of ERV without actually ever reading any of her blog posts, but either by skimming them or reading what other (biased) posters on this site think (who may have done just the same thing.)

    If anything, at least read the last couple comments in the latest blog post that come from members of this board.
  17. acer2000

    acer2000 Senior Member

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    This. The more a page is linked to, the higher it gets in google... Generally outrageous things get linked to and clicked on more... so its kind of a viscous cycle. :-/
  18. Gert

    Gert

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    Hello Dipic

    I have read ERV and Ive just looked at those couple of paragraphs.

    There is some validity to what she has said but I think if antiretrovirals are not used in a dangerous manner then the patients have a right to try them. In the meantime Erv will ensure that further research is stymied and we will never try antiretrovirals because the research will never get funding to determine whether XMRV is implicated in CFS and scientists will loose interest to do further research.

    Experimental patient use of approved drugs approved for other conditions is quite common and we don't ususally see a big rush to stop patients trying things.
    I say therefore if the drugs are safe short term and the side effects are monitored those who want to try it should go for it, before they shut down XMRV/CFS research alltogether. Could it be that if CFS patients start recovering with anti retrovirals then there would have to be funding and research and certain psychs or health insurers wouldn't want that.

    I have read ERV and yes she does seem to make some valid points but she we must remember Mikovits cannot answer her. What destroys her in my view is that she severly criticises Judy Mikovitz for speaking publicly knowling she can't answer back and if Mikovits did she would look unprofessional and Erv would have a field day telling her she should'nt be turning science into a media circus which is what Erv herself is doing. This keep quiet idea doesn't seem to apply to Erv
    Surely attacking someone who you then declare should not be speaking before further research is done is far more unproffessional that merely trying to address your critics like Mikovits has done. This sort of total bias and double standard does not make me think ERV is balanced or scientific. It makes me think she is a kangaroo court. where she spouts endlessly about someone she says on her own blog should not be saying anything at all. We don't really know how much Erv has twisted the truth to suit her own agenda and the only way we could know that would be if she and Judy had a mediated debate. What we have is a persecution panel of one and I don't give people that behave like that any credence as it makes them look vicious and not very intellegent. On that basis I pay no heed to Erv. Shes has far less credentials than Mikovitz to begin with and her behaviour is infinitly more unprofessional than anything she has accused Mikovits of.
  19. natasa778

    natasa778 Senior Member

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    dipic why are you still posting links to her site after it has been said over and over that it only ups the rating?
  20. natasa778

    natasa778 Senior Member

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    Owned by Seed media, and there is a long story behind it... there should be a thread on all this somewhere on XMVR board, if you cannot find it go to www.ageofautism.com and look under Jake Crosby blogs, scroll down a few pages and the articles should pop up

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