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From the Insider Out: How People with CFS View the Death of XMRV

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Cort, Sep 27, 2011.

  1. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
  2. Nielk

    Nielk

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    Thanks Cort for the link to the article and for your wise comments.
  3. Waverunner

    Waverunner Senior Member

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    Back at the beginning.
  4. Esther12

    Esther12 Senior Member

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    The first part of the article wasn't great... but I think you and others helped spin it in the right direction after that.

    If this is the final end of XMRV, and we see no good new evidence to support the WPI's claims, and the Lipkin study comes out negative too, then in two years time the only patients still writing/campaigning about XMRV will be those ideologically committed to the virus, and uninterested in the science - it would be terrible if that small sub-section of patients was taken by virologists to represent what CFS patients are like.

    The second half introduced you all as 'community activists', and this could give the impression that the 'grass roots' are all committed to XMRV, and only more official 'activists' are responding with any scepticism. There's already been a dramatic drop-off in interest in XMRV as more sceptical patients have stopped following the story - I'm a bit worried that Science magazine didn't seem aware of the importance of selection bias here! Searching for blogs about 'XMRV' is not a good way of representing the reactions of CFS patients.

    That's my concern anyway. You should twist arms to get a clarification Cort, now that you're working to corridors of power!
  5. Esther12

    Esther12 Senior Member

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    Yeah. There are meant to have been advances in the last few years, but I'm not really sufficiently medically aware to understand their significance, and they don't sound like anything dramatic.

    I think that PACE provided useful results for showing how the benefits of CBT/GET had been massively exaggerated over the years... but I'm not sure that anyone cares. The results were spun so obviously and manipulatively, yet patient concerns about this were just presented as a fear of the stigma of mental health issues or something. That disinterest in the truth from places like the Lancet was pretty disturbing.
  6. markmc20001

    markmc20001 Guest

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    Talking about helping "spin" an article in one sentence, and talking about "evidence" in the next is hurting my brain.

    Maybe try to keep each post either about the Spin or the evidence. Both in one post is a bit confusing to me.
  7. Esther12

    Esther12 Senior Member

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    Thanks Sickofcfs, but I don't think markmc meant to imply otherwise (I could be wrong).

    @markmc: Almost all communication involves an element of spin, but we can try to spin things in a way which encourages a more reasonable and evidence based view of things.
  8. markmc20001

    markmc20001 Guest

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    Thanks Esther12 on point number one.

    On point two, I'm all in favor of a more evidenced based and unbiased discussion. I think the evidence points to excessive media having influence on the XMRV debate. This article was uncalled for with it's title. "The death of XMRV". That is definitely encouraging. Encouraging in the wrong direction.

    The title of the article should have been something more like, "Explanation for so many negative studies", "Silverman's slip up", or "Not XMRV, It's HGRV's" .

    This is the picture I gather when I reading posts from the other side of the story on the other forum. There is another viewpoint that isn't getting the enough fair and frequent press.
  9. Esther12

    Esther12 Senior Member

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    No probs mark.

    It's an explanation for so many negative studies... but not an explanation for the initial positive study. If the WPI and Ruscetti were able to find significantly more positives from CFS patients than healthy controls and present consistent results, then it wouldn't have mattered whether they were finding XMRV or HGRV. Until the WPI are able to back up their claims under independently blinded conditions, then their claims are going to be treated sceptically by the media.

    Claims made on internet forums should always be treated sceptically!!
  10. Dreambirdie

    Dreambirdie work in progress

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    XMRV is not going to be going away any time soon.

    WPI plans to do a full genentic sequence of the virus that they found, which was different than the one Silverman found. If successful, this would prove that WPI's virus wasn't the same as Silverman's (referred to as VP62--the accidental lab contaminant), and silence the roar of the mouse contamination theorists. Judy Mikovits has been saying this all along, that the sequences they found were not the same sequences as were found in Silverman's lab, but because of certain similarities it was deemed scientifically responsible to cite his works and use his name for said virus.

    The discovery of Silverman's contaminant VP62, which the WPI never used, and the recent retraction of Silverman's part of the original Science paper, puts us back to SQUARE ONE, regarding the ongoing research on XMRV.

    It's good to remember that this XMRV journey is not a sprint, it's a very longggggg marathon.
  11. markmc20001

    markmc20001 Guest

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    Hi Esther12.

    Absolutely take everything with skepticism these days. Agree with you there. I also consider myself very open minded and skeptical. Super skeptical, so much that I constantly question everything. It is a hobby of mine to be skeptical. Love it.

    Maybe I can share something I find entertaining with you? If you have a few minutes, for entertainment purposes only.

    If you are game, click on the link in my signature. There are some very good videos under the "evidence" tab. 5 minutes up to an hour depending on how interested you are.

    Great entertainment and fun for those with a scientific mind and a skeptical viewpoint! Very timely considering all that is going on in the world.

    Enjoy! God Bless! and thanks for the lively and respectful debate!

    Mark
  12. barbc56

    barbc56 Senior Member

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    Perceptive point about the "activist

    If people are still hanging on in two years, that is their perogative, but I don't want them representing me.

    I thought the article was okay, but it looks like maybe there was a space constraint?


    SickofCFS. I think we can say we have all been there, done that. Maybe we need a TShirt? :>)

    Many edits. Computer problems. Finally saved what I wrote. Duh.
  13. Firestormm

    Firestormm Guest

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    Comment from Cohen:

    'It's terrific to hear all these voices commenting on this article and the one that I wrote with Martin Enserink. I do want to clear up a few misconceptions and inaccuracies in some of these posts.

    Science published several news articles about CFS/ME before XMRV, and I'll paste in references in a separate post. Martin Enserink indeed covered the CDC misappropriation of funding that one post here mentions.

    Simon Wesseley was one of many perspectives that Martin and I included in our article, False Positive, and we included him in particular because he was a co-author of a technical comment that criticized Lombardi et al.--not because of his thinking re: psychological vs. biological etiology of the disease.

    Our article also makes clear that Lombardi et al. never presented XMRV as THE cause of CFS/ME. Yet it did lead some people with the disease to make that leap, and indeed, the use of antiretrovirals demonstrates how some believed its role was central enough to take drugs that can have serious toxicities and have yet to prove themselves in any clinical studies of CFS/ME. The supposed positive results with antiretrovirals in n =1 reports are anecdotes, and to claim they are evidence of anything scientifically meaningful is misleading.

    Elaine De Freitas and Osler's Web put great credence in the HTLV-2 hypothesis. I do not know of any evidence today that supports this hypothesis. Regardless of how De Freitas was treated, no one has built on her initial findings, and it is not simply because no one tried. Most likely, it's because the hypothesis is wrong.

    XMRV is, without a doubt, dead. The viral sequence reported in Lombardi et al. is the result of a contaminant. If other gammaretroviruses prove to have links to CFS/ME, they will not be the virus described first by Silverman as XMRV. It's no more complicated than that, a point that John Coffin made clearly in his Ottawa debate with Judy Mikovits. I think confusing XMRV with other possible viruses clouds the waters for everyone.

    I do not know who the majority of patients consider to be patient advocates, and I of course cannot poll millions of people to find out. The notion that Cort Johnson, Bob Miller, and Marly Silverman are not advocates is inaccurate. I do not know their financial ins and outs, but advocates for many diseases make money doing their work--professional AIDS advocates are among the most informed voices out there, and polio's great champion, Basil O'Connor, ran the March of Dimes--and I think this attack on them is unfair and petty. I quoted each of them offering thoughtful perspectives, which, tellingly, do not form the basis of the ad hominem attacks here.

    WPI did use VP62, in contrast to claims posted here.

    Again, many thanks to all posters for taking your time to weigh in with your thoughts.

    Jon Cohen '

    http://news.sciencemag.org/scienceinsider/2011/09/insider-looking-out-how-people.html#sci-comments
  14. markmc20001

    markmc20001 Guest

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    Apparently Jamie Deckoff Jones got an "XMRV false positive" teashirt message from Dr Vincient Ranciello. That's about like doing a dance in football when somebody gets a first down(which is a penalty in football anyways).

    http://treatingxmrv.blogspot.com/

    definitely time to cool off. Agree with you there SOC.
  15. Daffodil

    Daffodil Senior Member

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    why would racaniello do that? he always seemed very level headed and reasonable to me..compassionate even
  16. Esther12

    Esther12 Senior Member

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    I don't think he wanted to upset anyone. On his e-mail mailing list, the picture for the podcast was included. I think he has changed it now.
  17. SilverbladeTE

    SilverbladeTE Senior Member

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    I'll say it again

    this kind of thing takes at least 5 years or so to work out.
    Hollywood is full of s**t, miracles/fast super work can occur, it's unusual though so that's what makes it so...unusual :p
    So, like it or not folks...it's gonna take time.
    Time that should have been spent 30 years ago if not for some evil ratpukes, acting as "coolers" for persons or persons unknown.

    But then again, the tools and techonology weren't so advanced back then, so in he end, all the Weasels have achieved, is made a much better bloody noose to eventually hang themselves with one day.
    Wheels of justice grind ever so slowly, but exceedingly fine, just like science.

    and like, there's an old saw about "give a man enough rope"...doesn't mean yer actually gonna bloody lynch him!
    *taps the glass of the screen and waves at the spooks who may or may not be listening into subersive elements*
    Go on, bugger off and catch some real threat to society, Al-Qeda, or better yet, bankers, something useful like that! :rolleyes: :D

    But I'll tell you one thing, about all this XMRV in the media, as I noted while ago...

    SQUEAKY WHEEL GETS THE FRIKKIN' GREASE!!
    ;)
  18. markmc20001

    markmc20001 Guest

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    Only he knows.

    I was simply pointing out(because of SOC's earlier comment) the other forum has a pretty good reason if they are perceived to be "emotional" at times. We are all humans. Any human would get emotional after that happens.

    My impression has been there is a constant flow of negative news that has come out Against the WPI, Judy, and patients. Almost non-stop for two years I have been watching. Barely any supportive news. That's my impression.

    No beef with SOC though. I don't think she meant anything bad. Just wanted to illustrate pretty good reasons for patients and even scientists to get upset. We are all human.
  19. Firestormm

    Firestormm Guest

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    http://www.virology.ws/2011/09/29/admit-when-you-are-wrong/

    'Admit when you are wrong

    29 September 2011

    One of the lessons learned from XMRV is that its important for scientists to admit when they are wrong. That is why I took down the image originally posted with TWiV #150.

    I had intended for the image to be a counterpoint to T-shirts worn by CFS patients proclaiming them to be XMRV Positive. I felt it was equally important to advertise the message that XMRV is a contaminant. It was not meant to be disparaging or humorous. However a number of individuals felt otherwise, and told me so in rather harsh terms. Then I received the following email:

    I am writing with a concern about an image shown on your website/video blog TWiV.

    I have been religiously following you since the first news of the findings in Lombardi et al. I regularly turn to your blog for real scientific information and not the hearsay and pseudo scientific nonsense that permeates the internet.

    As a long term patient whose health is deteriorating, I find myself often discouraged by the levels that the conversation regarding CFS drops to. It seems hard to difficult at times scientists willing to work hard without prejudice towards a cure for this terrible disease.

    The image in question serves only to widen the divide between patients and researchers. While people suffer, the scientific community has a chuckle at our expense.

    I would ask that they image be removed and replaced with one of unity. While XMRV did not pan out, patients are still in need. We need to know the scientific community is doing all they can to save us.

    None of the earlier comments that I received about the image were logical and composed; they brimmed with vile. This respectful and reasonable request convinced me that the image was not helpful, so I removed it.'
  20. Daffodil

    Daffodil Senior Member

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    ratpukes LOL

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