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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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Forbes: "Big Study Linking Chronic Fatigue To Virus May Be Fatally Flawed"

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by spinhirne, Jan 9, 2011.

  1. Angela Kennedy

    Angela Kennedy *****

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    Who is Dusty Miller?
     
  2. Angela Kennedy

    Angela Kennedy *****

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    And part of the "this needs to be a safe place for people to have differing points of view" argument means that those of use who are concerned with these latest allegations against Wakefield, and the tendencies they are part of, need to discuss them rationally and openly without being told to be quiet in case somebody's watching. 'Groupthink' is hardly going to happen when people are openly seen to disagree with each other.

    I'm concerned that you seem to be implying you are somehow being silenced, because people disagree with you?

    Again - I'm not arguing that we should uncritically 'believe' Wakefield, not at all, and I think you have a problem understanding this. THAT concerns me.
     
  3. urbantravels

    urbantravels disjecta membra

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    Not at all. Gotta work a lot harder than that to silence me. And for the record, I don't feel we need to censor ourselves because others are watching and judging our community. What I *do* want to do is encourage those who disagree to do so - civilly.

    The anti-vax sentiment on this board can seem so pervasive that I'm sure many others who might not agree with that point of view don't feel particularly encouraged to dissent.
     
  4. Angela Kennedy

    Angela Kennedy *****

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    But, as a community (I'm not a patient), there are, in my opinion and this is what I'm trying to discuss, parallells with how people are treated in public 'science' discourses, and ignoring these may be done at the community's peril.

    If taken to its logical conclusion, none of us may ever raise our heads above the parapet in case of being assigned guilt by association. Currently, Lombardi et al are being implied as making inappropriate claims in getting their paper published. Suppose that meme gathers momentum? We will all be in a terrible situation if we gag ourselves so that we don't look 'bad' to people with unpredictable, unreasonable peccadillos about what constitutes 'good' patients or their supporters.

    But I agree with you about there being a tension in this area. Nevertheless, ME/CFS patient 'respectability' maintaining is one inexact science being played out on a slanted playing field with a team who have the power to keep moving the goalposts and a crooked ref (I've resorted to metaphor. sorry.)
     
  5. Angela Kennedy

    Angela Kennedy *****

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    So you are happy for people to keep discussing this and to disagree with you openly then if they feel the need?

    As regards 'dissent', people have to make their own choices whether they take part in a forum, you'd agree?
     
  6. eric_s

    eric_s Senior Member

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    Yes, i agree. I would not say there is no connection between vaccines and autism. Once again, such a link is far from proven, as far as i can tell, and i'm not really able to judge the science anyway, but in light of some reports finding XMRV in a significantly higher percentages in autistic people as compared to healthies, and the possibility of a vaccine triggering replication of XMRV, i am open to that idea. The question wheter Wakefield faked things is a separate one.
     
  7. Esther12

    Esther12 Senior Member

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    As you went on to say, I think it is about competing desires being in tension with one another rather than us being able to follow either ideal to it's most extreme position. I don't know how best to play this one, I'm not sure anyone does.

    Dusty Miller is a retrovirologist, friends with the Ruscettis, and planning to work upon XMRV. Some of the CFS community seem to have been pretty prematurely rough on him imo.
     
  8. eric_s

    eric_s Senior Member

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    Maybe that ship has sailed, i don't know, but that does not mean we have to ceate more wind...

    In regards to Dr. Myhill, i don't know much about her. I just don't have the time and capacity to follow every story, and since i don't live in the UK, it's not so important to me. Maybe she was indeed able to help some people, but i'll tell you honestly, when i hear things like "stone age diet", the "quack alarm" starts to ring in my head. Not saying that's what she is, i don't know, but yes, i don't think it helps us to be associated with a lot of controversial people. I prefer people like Alter, the Ruscettis, Silverman, Klein etc. When we have them and they stay on the case, i think we are close to "victory".

    We definitely have to criticize bad science. That's what i'm saying, too. And only scientists can do this. So we need to unite more, raise more money and get good scientists to work, to prove the authors of bad science wrong. But with my limited knowledge of the Wakefield story, it looks as if he might have been the author of bad science here.

    Dr. Dusty Miller is a world class retrovirologist, as far as i know, and people have been acting paranoid and aggressive instead of being happy to have someone of his caliber getting involved.
    We need money for scientific studies, clinical trials etc. and if we want that money to come from governments or the general public it will be their perception of the situation that makes the difference. So it does matter how we look. But we should not wait for them. We need to do more ourselves, we can do much more.
     
  9. Mark

    Mark Acting CEO

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    Having merged these threads, I'm not sure it was a good idea, just as I'm not sure it's a good idea to merge the subject of this thread - responding to a terrible Forbes article full of inaccuracy and misinformation, which is just the sort of rubbish the 'contamination papers' were designed to fuel - and various other ongoing persecutions that should have no obvious connection but seem to get insinuated into the discussion, which originates towards the end of the Forbes piece. It's cleverly done, to create a sort of subtle "guilt by association" feeling in the reader, which we risk spreading if we accept the equivalence - the only real connection between these cases is the one these 'attack dogs' create.
     
  10. Angela Kennedy

    Angela Kennedy *****

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  11. Angela Kennedy

    Angela Kennedy *****

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    That's a key issue, Mark. It is a frequent occurrence in rhetoric, this subtle 'guilt by association' insinuation. Obviously this creation of such is a rhetorical device that it's worth studying, if only to relieve ourselves of the unease and fear of being (incorrectly) found guilty by association such a rhetorical device is designed to engender, and which (i would argue) often, very effectively, prevents people, in various ways, from effective advocacy.
     
  12. xrayspex

    xrayspex Senior Member

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  13. eric_s

    eric_s Senior Member

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    I don't think i was wrong there. I did not introduce any criteria in my post determining who is to be considered a scientist. Basically, what i was saying is that only someone who understands a topic can make a serious judgment about the quality of something published in that area. And i think this is correct.
    My point was more something else, anyway. I wanted to say that instead of getting angry over studies, articles etc. we consider bad science, we should try to produce more good science. And for that, again, we need scientists. I can't do it and i guess neither can you. But we can fund it or even organize it, and i think this is our job.
    I TOTALLY disagree. We should never think this way and it is not true. A simple calculation. 2 million ME/CFS patients in Europe and North America. I'm pretty sure 75% of them can save 100 US Dollars per year, if they plan it. This makes 150 million US Dollars per year. It's not a miracle, it's even rather easy to be done. All we have to do is start doing it.

    I don't know who Jane Austen is. And i would like to ask you to please stop talking this way, i'm trying to be civil.
    Then please go and read up about the story. I don't have time and energy to report it all.
    I don't think what i have said can be considered ad hominem attacks because i did not attack a specific person and i did not criticize them in any area that was not relevant for this problem. I think the way people acted over there in that situation was not helpful and productive at all. I did not criticize some of their worries about how the study is to be conducted. Those worries may or may not be justified. I was criticizing how the discussion was conducted. This does matter too, because i still believe the image we provide is important and because we are dealing with people and if we offend and lose them, we are hurting ourselves.

    I'm not looking for a discussion here. I gave my input regarding Wakefield, just as i'm interested to read other people's inputs. I don't think just because someone is voicing an opinion that is different from someone elses there has to be a fight until someone is shut up. People should read the different viewpoints and make up their own minds.
     
  14. urbantravels

    urbantravels disjecta membra

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    The Dusty Miller blow-up was on the other forum, not here. Go take a look and see how reasonable you think the discussion was.
     
  15. Cort

    Cort Phoenix Rising Founder

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    That sounded like a real hack job on Forbes..having a business reporter tell Science they shouldn't have published a study was an eye-opener for sure.....Good lord!

    Objections - raised in order to have a dialogue and come to an understanding have happened in the ME/CFS Forums regarding Miller's study.

    So have 'attacks' that use innuendo, twisting words out of context, people trying to 'win' an argument no matter why, people putting being 'right' above finding out what is true....have also happened. Both have gone on.

    It's a mix...Its a complicated situation.... the main voice there raised an interesting question about IAP....and it was a legitimate question. Miller's attempt to answer it was not responded to .......that same person also brought up the question of the VP62 clone - another legitimate question.... that same person later said Miller had no experience with MLV's (he has 20 years of experience).........it was a real mishmash, in my opinion, of reasonable questions and unreasonable statements.

    The heated voices naturally draw more attention but there are calmer voices there as well.

    Miller's full study will, I believe, be out soon and everybody will get a chance to examine it.
     
  16. Snow Leopard

    Snow Leopard Senior Member

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    Can we complain to the editor, because there are far too many factual inaccuracies in that article. (eg it is a prostate cell line, not mouse and the Science findings were replicated in clean labs).

    Re- Dusty Miller, perhaps we should have a thread here demonstrating our support of his research?

    edit- I personally am not writing a letter at the moment, so if anyone else wants to give it a go...
     
  17. urbantravels

    urbantravels disjecta membra

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    I'd say definitely send a letter to the Forbes editor, can't hurt, and there's a small possibility it might help.

    When I tweeted the Forbes article I wrote, "Does Forbes say 'Sell' just because the WSJ says 'Buy'?" (this would be in reference to XMRV). Seriously, I wondered if Forbes just wanted to take a contrarian view to the excellent coverage by Amy in the WSJ.
     
  18. Wayne

    Wayne Senior Member

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    3,749 views | 0 recommendations | 20 comments

    Those are the latest numbers on the Forbes article. I just posted one last comment, and won't be wasting any more time going back there. I like the 0 recommendations part, but was quite amazed at the 3,749 views.

     
  19. Angela Kennedy

    Angela Kennedy *****

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  20. guest

    guest Guest

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    I agree. Please feel free to write a letter.

    In my eyes one cause for all this bad coverage is the fact that authors have no clue about virology and are too lazy to read the studies. Moreover it's much easier for them to take the contamination pathway. Why? Contamination is something everyone understands and gets the author into a position of moral superiority. Do you think he would be able to answer any virus related questions that needs a little understanding of the material? Definitely not BUT if it's contamination he wouldn't have to anyway. Why? Because there is no virus and therefore no need to understand things he probably could not understand anyway.
     

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