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Conflicting Papers on Hold as XMRV Frenzy Reaches New Heights

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by charityfundraiser, Jul 2, 2010.

  1. Cort

    Cort Phoenix Rising Founder

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  2. Navid

    Navid Senior Member

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    This is an example of taking a quote and using it completely out of context...i saw the video too and the researcher was obviously being very tongue and cheek when he made that remark. come on now!!!:D the line got a big laugh from the audience.
     
  3. Esther12

    Esther12 Senior Member

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    It was meant with a sense of humour - but I thought it was also a genuine complaint. I can't imagine that going through them all is his prefered use of time.
     
  4. SOC

    SOC Senior Member

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    That's my biggest fear about posting in these searchable forums. If this hits the fan and media (or people wanting to discredit us) come here, it will be very easy for them to take something out of context and present a completely different picture then we intend.

    We need to speak in soundbites, but we don't here. Not that I have a clue what to do about that, but it worries me.
     
  5. SOC

    SOC Senior Member

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    Angela,
    It is clear that there is little, if anything, on which we are going to agree. Let us just agree to disagree and move on.
     
  6. Angela Kennedy

    Angela Kennedy *****

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    Move on where? Serious question. Where does the community go to when they are constantly being constructed as angry irrationals? Cort mentions AIDS- it was not just a case of 'suddenly AIDS was legitimized and so were its advocates' - advocates had to push for that legitimization- and they did this by, generally, being in solidarity and not buying into the delegitimization of their fellow advocates (even if unwittingly).
     
  7. Navid

    Navid Senior Member

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    i'm sure he does not go through them all....and though it may have been a complaint, i don't believe it was said to paint cfids/me patients as hysterical or irrational.

    of course if someone makes a discovery that may lead to a patient grp recovering their health, you will hear from that grp. it's actually a great compliment that ppl are inspired and given hope from your work.

    look at MS...the italian doc who is doing the microsurgery on patients arteries is hearing from a LOT of MS patients...it's a normal reaction.
     
  8. akrasia

    akrasia Senior Member

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    No one is advocating sending nasty emails to anyone. Hard hitting reasoned, critiques, with an edge are perfectly within bounds. And if some of us exceed this in tone, they should be quickly forgiven. The only thing you cannot do is threaten violence.

    The assertion that we are as Mithriel put it "bunny boilers," or just frothing at the mouth is a time-hallowed way of shutting people up; mutatis mutandis, it's been used against african americans, gay people, feminists, and now us. It's sister strategy is ridicule. The sad thing is when patients are co-opted by this tactic.

    The only thing which will determine the future of research into this illness is money. And money will come when they realize, as Judy M. said in the latest Oslers Web, that we are looking at the greatest health calamity in American history. It's no longer about "us." This took me a moment to absorb, but if the implications of XMRV are true, she's right.

    And Wilhelmina. I have profound differences with the CAA and its approach to advocacy. My first impression of your words was that you, as a scientist, were identifying with scientists and not with the patients. After all, if it's good science that will free us, it's been the bogus, crummy poiitically motivated science that has almost buried us and that didn't come through in your statement.

    I accept your explanation that your intent was different from the one that seemed to me and others, deeply problematic. You know the expression "Caesar's wife has to be above suspicion?" Given your close relationship both as a board member and mother in law to Kim McCleary, your words are going to receive extra scrutiny. That's just how it is.

    Better health to everyone.
     
  9. Esther12

    Esther12 Senior Member

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    Oh yeah - I'm sure he didn't mean it as an attack.

    But I think CFS patients are rather unusual in the way we approach researchers, as we've largely been shaken of our faith that it will all work out in the end, and we can just leave them to get on with it. Personally, I think that with XMRV the scientific system has got in gear, we can leave it alone and wait to see what the answer will be. With other aspects of CFS there's so little objective evidence that real 'science' isn't really able to take off and so is open to subversion by the prejudices of those involved.

    (Went a bit OT there... please ignore... feeling a bit odd today).
     
  10. Esther12

    Esther12 Senior Member

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    I think that it was vital to the success of these movements that they disasociated themselves with those aspects which left them open to ridicule.

    Most people are going to want to be dismissive of us because we are weak and we need help, when they'd rather get on with their own lives. That means we have to be especially careful about the way we behave. Think of the damage the 'angry black man' stereotype has successfully done to black people. Much of their anger will have been justified, but it was used to marginalise them. The same will happen to us unless we're very careful. It's not fair, but I don't think we can expect to be treated fairly at the moment.
     
  11. akrasia

    akrasia Senior Member

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    Esther 12,

    I don't want to take this ot, so I'll be brief and give an example of what I'm talking about.

    Back in the mists of time, the late 60's, some feminists didn't want out lesbians to be a visible and prominent part of the movement. Women who stood up for themselves were often labeled 'dykes' and man haters. So, gay women were turned on and excluded. It was a shameful moment. And it compromised the integrity of the movement and did nothing for gaining recognition.

    Similar debates went on in the gay community regarding drag queens, and again it didn't help anyone.

    You'll never convince the haters to take you seriously unless you're passionate and are willing to FIGHT for power and have enough gumption not to be supine.

    Martin Luther King himself had all manner of projections and craziness thrown at him. He is only seen as moderate in retrospect.

    Back to our originally scheduled program
     
  12. Angela Kennedy

    Angela Kennedy *****

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    I think I have to explain what it is that has irritated me about Ruscetti's comment: and it is, as often these things are, about deep problems around medical science and the relationships of those claiming 'scientific' authority and the poor saps desperate for help (the poor saps? That's us, sufferers and carers, of any disease, but especially here of the devastating physiological dysfunction that gets labelled as 'CFS'. I'm being ironic about the 'saps' comment).

    Relationships with scientists in 'CFS' have been marked by a constant expectation - demand- of deference by the patient group towards scientists (and the charities), and an often viscious resentment, though expessed most often through condescension, when that doesn't happen.

    This - I would argue - is part of the fallacious claim to scientific authority whereby people are expected to suffer on trust all sorts of claims made by people claiming this.

    Over here in the UK, Simon Wessely is part of a group called 'Sense about Science'. The ostensible remit is to persuade the public to be more 'scientific': however, their whole strategy for this is to 'accept peer reviewed papers as gospel' full stop. What they fail to realise- or maybe are trying to ignore- is that, once people become more 'scientific', they become more analytical, and claims to authority ("Accept our word because we say so. We're scientists) become more difficult to swallow without critical reflection and interrogation, and often then contestation. It's inevitable, and for some in power, its unbearable.

    The other issue to consider here is that CFS as Carruthers et al have defined it, is such a terrible disease, that people are going to want to engage with scientists working on it to bring about a cure if possible [and removal from the quasi-religious 'INYH' belief system definite]. They do that with other illnesses also (remember Lorenzo's oil for example?).

    So, we have an increasingly knowledgeable (dare I say 'scientific'?) bunch of sufferers and supporters (similar to AIDS) attempting to engage with 'scientists' (add medical doctors to this), some- many- of whom have forgotten that patients are not there for their careers to be built. TO make it worse many 'scientists' have been - mmn- very mistaken in their claims about 'CFS', time and time again, and the CFSers know this.

    Ruscetti's comment seemed to be a dig at a patient population that has every right to enquire of the good scientist The laughing in the audience seems a little too apparently deferential for my liking, in a situation where deference is encouraged or coerced almost to the point of self-destruction by certain parties: the exaggeration itself irritatingly banal in the circumstances.

    If Ruscetti ever reads this exchange, I hope he's intelligent enough to understand at least the sociology of science that lies behind my comments. But, with good reason, I've become always fearful that scientists are so busy buying into the construction of CFS patients, at least, as recalcitrant, that he may not understand why some of us will be irritated by remarks like that (and some of the other clangers dropped this week alone.)
     
  13. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I don't mean an inflamatory or exageration or anger in soundbites. I mean a short, direct answer that is truthful. If you give a five sentence answer, the news media will pick out one of those sentences, and they decide. If you give just one sentence answer, then you have more control over what is quoted.

    Dr. Donnica is a master of that. She can be asked a controversial question and she will take control in her answer to place the emphasis where she wants it, not where the reporter wants it. All the while, it looks like she answered the question.

    Tina
     
  14. julius

    julius Watchoo lookin' at?

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    There was one point (please don't ask me to search through the forums to find the quote :tongue:)
    when Ruscetti asked Judy M if she could get the patients to email her instead of him because he was being swamped. Judy mentioned this in an email response to a patient enquiry.

    So, the comment at the conference was delivered as a joke, but there was a real (albeit minor) complaint behind the joke.
     
  15. jspotila

    jspotila Senior Member

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    It was not my intention to use it out of context. You are correct that it was intended to be funny. I left out the "heh heh heh" when I posted the quote.
     
  16. Cort

    Cort Phoenix Rising Founder

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    My reaction to Ruscetti's comment was a) the guys got a great sense of humor b) CFS patients desperately need more assistance from the research community and c) a twinge of pride that our community would actually seek out a researcher - I can't imagine that happens all that much with other disease groups.if

    Later on he exclaimed at how many people can give you the day and hour at which their lives changed - something that he thought was remarkable and that really meant something. It was nice to hear a researcher get that. If
     
  17. judderwocky

    judderwocky Senior Member

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    Ahh the constant cries for hegemeny. Amusing.
     
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Exactly! She went to the press to trumpet that they were "1000% sure they were right and there was no XMRV in the UK" and shame on the Lombardi paper because they published without being "1000% sure."

    Then she comes back to the press saying the commercial XMRV test and prescribing anti-retrovirals are 'unethical'.

    She works at the same institution as Wessely. She knows how many people say he's a charlatan and sadist. This should be a red flag to anyone not to go and attack patients based on what he says.

    She affirmatively stepped into the public arena to take a dump on our heads and now she's angry we aren't saying "thanks for the hat".

    I agree that we're glad she's not in the "CFS" business anymore; just like we were bouyed when Stephen Straus and Wessely both said they were not going to be involved anymore because of the 'controversy'. Good ridance to this charlatan.
     
  19. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Thank you, Shiso, for this wonderful post! This really resonated with me.

    Those of you who don't know me may be surprised to know that my temperment is non-confrontational and conflict-avoidant! I have often questioned why I am/was a lawyer and especially a litigator when I don't like conflict. I didn't like conflict especially when I didn't fully believe in my client.

    But this is a different story. I fully believe in my 'client' here- us. And presenting our view only moderately has not worked. I believe the ME situation demands that there be a good deal of aggressive demanding of our human rights.
     

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