1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Join the National PR Campaign for ME: Power to the Patient (P2tP)
Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients ...
Discuss the article on the Forums.

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. spinhirne

    spinhirne

    Messages:
    6
    Likes:
    0
    Check out the post on Forbes

    Forbes has a history of extreme positions on medical subjects. I think this recent post should be read and responded to by those knowledgeable.
     
  2. Esther12

    Esther12 Senior Member

    Messages:
    5,383
    Likes:
    5,882
  3. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    On another thread people were discussing lawsuits. Now this is a case where i would say chances for success are pretty good, at a first glance.
    But i don't know if the WPI really care that much about one such blog article and wheter it would be wise for them to do it.
     
  4. LJS

    LJS Insert Witty Comment Here

    Messages:
    207
    Likes:
    7
    East Coast, USA
    This article is the worst reporting I have seen on the contamination papers and XMRV in general. It states that the whole case of XMRV is solved and proven to be contamination with no possibility of something else going on and that the XMRV science paper should never have been published. We obvious still do not know the fate of XMRV and I feel the possibility of contamination needs to be taken seriously but some of the statements in this article go beyond bias.

    Forbes: "Big Study Linking Chronic Fatigue To Virus May Be Fatally Flawed"
    http://blogs.forbes.com/sciencebiz/...fatally-flawed/?boxes=businesschannelsections


    Please leave comments on this article correcting the authors errors.
     
  5. Riley

    Riley

    Messages:
    48
    Likes:
    0
    Louisiana
    That is a terrible article. I don't have the energy to worry about the naysayers at this point. The science will be done regardless of what they think, and I believe xmrv will be proved one way or the other in 2011 with or without them.
     
  6. spinhirne

    spinhirne

    Messages:
    6
    Likes:
    0
    I'd like to hear your tactics...

    for dealing with the press promoting bad information (and I guess a Forbes writer's blog qualifies as the press).

    I just heard an extremely ignorant Anderson Cooper abuse Andrew Wakefield on CNN. At the end of the 11 minutes Wakefield was starting to turn things around. If Wakefield has the courage to take that abuse, other advocates for reality should be ready to take it on, also.
     
  7. Wayne

    Wayne Senior Member

    Messages:
    2,221
    Likes:
    1,373
    Ashland, Oregon
    Reply to Forbes Bad Article on XMRV

    Hi Spinhirne,

    I've just recently begun trying to formulate a strategy on how I might best deal with bad information put out by the press. I'm starting by stumbling along the best I know how; I just posted this on the Forbes piece a few minutes ago. (I tried to be polite, even though I was fairly PO'd when I wrote it. LOL)

    Wayne

     
  8. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    55
    hi all, I think this was originally posted here http://genome.fieldofscience.com/2011/01/searching-for-cause-of-chronic-fatigue.html and Forbes jsut copied Prof (??!!) Salzburg's post. If I had more braincells at the moment, I'd love to send comments with all the science and great quotes, including from Coffin and one or 2 of the other authors, that have come up since the publication of "the contamination" papers. This guy seems to have missed them. Slow catch-up after the Xmas break maybe?

    Wouldn't it be great if he realized what a fool he's made of himself, like Racaniello did, and like a real scientist, and a real man, admit that he wrote before he thought or had looked into the science and was wrong.
     
  9. lancelot

    lancelot Senior Member

    Messages:
    324
    Likes:
    2
    southern california
    Anderson is only reporting the facts and this has nothing to do with ME/CFS. stop using our community to support your false beliefs with wakefield. he is a fraud just like the weasel.

    As far as this forbes blog, who cares? is forbes an authority of health related issues? go post and educate the author=the end. Besides, you have to undertstand this is America where everyone is FREE to post their views without government censorship. We want to hear from all sides don't we? Always remember that in the end, the truth shall always prevail in the good ole' USA!
     
  10. alex3619

    alex3619 Senior Member

    Messages:
    7,688
    Likes:
    12,531
    Logan, Queensland, Australia
    Hi, I just posted this to Forbes:

    With special regard to the Hue paper, and contamination issues in general, nothing that has been published has proven the problem is contamination. I have read the Hue paper too.

    They and others have only proven, yet again, that contamination is a possibility. This was already well known to retrovirologists, especially MLV researchers. There is nothing new here of any interest. XMRV researchers routinely test for contamination, and they design the experimental protocols so that if contamination occurs it will be obvious. The cases of contamination that have been reported are because everyone is checking. If contamination was such a big problem, why do so many studies using PCR finding nothing at all? The real issues lie elsewhere, and are not being debated in the media very much.

    In any case none of the other methods used in the research have this problem, and they are used much more widely than simple PCR. PCR is a dead horse in this area. It like debating that a horse and cart is bad because of wheel ruts in the dirt roads, while jet airliners are cruising overhead. PCR is mostly being continued, in my view, because it is useful toward developing standardized high throughput mass blood screening for use in blood banks. We need to protect the blood supply, and banning ME/CFS patients from donating blood is not addressing the real problem, the masses of infected but currently healthy people.

    Alex Young, aka alex3619
    B.Sc. (biochemistry), B.Inf.(hons)
    ME/CFS research advocate
     
  11. Wayne

    Wayne Senior Member

    Messages:
    2,221
    Likes:
    1,373
    Ashland, Oregon
    Oh my. I knew we're all guilty of fostering "false illness beliefs". Now it appears some of us are also harboring "false Andrew Wakefield beliefs" as well??? Sounds very serious!!! :D:angel:

    Wayne
     
  12. alex3619

    alex3619 Senior Member

    Messages:
    7,688
    Likes:
    12,531
    Logan, Queensland, Australia
  13. Deatheye

    Deatheye Senior Member

    Messages:
    160
    Likes:
    18
    Bhaa thanks for the terrible morning.. Worst article I've read for a while....
    And the first and only comennt right now isn't anything bether. I wonder how he came to that conclusion even after Reading the Hue et al paper and the retraction.
     
  14. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    I think the best way is to prove them wrong through finally producing the scientific evidence necessary for that.
    Until then, there will always be people writing things we don't like. And as long as they don't coss the line of what's allowed under the law we can't and also should not keep them from doing that. Of course we can post comments, so that other readers know there are also other viewpoints, and maybe in some cases they might even see themselves that they were wrong.
    But in the end only more evidence will make the decision.

    And in case a statement is made, like in this article, that is in my opinion not true and hurts the reputation of a person or an institution like the WPI, they are free to take legal action against the author.

    As far as Wakefield is concerned, i think we should be careful. I'm not a scientist and don't know much about his study (studies?), but i don't think it's a good idea if we suppot the wrong people, i mean charlatans, fraudsters etc.
     
  15. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    154
    Essex, UK
    I'm sorry, but where are people 'supporting' charlatans and fraudsters and 'wrong people'?
     
  16. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    It might be like that in the case of Wakefield, but like i said, i can't judge it. But i would recommend being cautious.

    We should not provide people with a chance to make us look bad. And supporting people who might have faked evidence might be dangerous in that regard. Just like i don't think it's smart to attack people like Dr. Dusty Miller in such a way as it happened on another forum.

    In the end it won't make much of a difference, if XMRV is confirmed. But if it's not, and we are still in the situation that we have to convince people, i think we should look serious.
     
  17. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    154
    Essex, UK
    But- if you are worried about being the victims of various 'guilt by association' - that ship sailed long ago!

    And, by your logic - nobody in the ME community should be supporting Sarah Myhill either, or even just saying she's been treated inappropriately - but people are.

    We are always, as a community, in danger of being attacked, just for daring to be ill or have family who are so. Every move we make is in danger of attack. We've had years of not being taken seriously, no matter that the situation is very serious.

    Critiquing bad science or inappropriate press attacks on people like Wakefield is not supporting 'charlatans' and 'fraudsters'. It is contextualising the problems that dog the practices of 'science', and these do have specific relevance for the ME/CFS community.

    We can't not study these issues, in order to contort ourselves to please others, in order not to cause multiple others with their own unpredictable (and predictable) prejudices thinking we 'look bad' and deciding not to take us seriously, who don't seem to be taking us seriously in the first place.

    i don't know anything about Dusty Miller, but if he/she's doing something that's raising concern, then concern needs to be raised. But are 'attacks' really even happening? Objections do not constitute 'attacks', for example.
     
  18. Esther12

    Esther12 Senior Member

    Messages:
    5,383
    Likes:
    5,882
    I stumbled upon a thread on the mecfsforum that did seem pretty unfair and attacking on Dusty Miller.

    The guilt by association thing is unfair, but it is still being used as a way of discrediting patients and their concerns about the way they are treated.

    I don't know much about Wakefield, and haven't read much of what was said here, but I expect that those CFS patients most motivated to comment upon the case are those that feel he has been poorly treated - thus, an impression that CFS patients are more likely to be supporters of Wakefield than is really the case will be created amongst those browsing the forum. Seeing as Wakefield is so widely viewed as discredited, these sorts of silly things can damage the way we're viewed by others.

    Maybe all we can do about it is put these little notes about, in the hope of reminding any 'outsiders' that things are more complicted that they'd instinctively assume. It is a complicated one though, and there is a tension between wanting to appear reasonable to those who are judging you unfairly, and wanting to maintain a freedom to speak freely and openly.
     
  19. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    507
    Los Angeles, CA
    I think many on this board are trying to create a false equivalency between the situation of Andrew Wakefield and the current situation with XMRV research. Not everyone here supports Wakefield or believes in his long-discredited theory about vaccines causing autism. Just because the press is often getting it wrong about where the XMRV research is right now, does not automatically mean that the press is wrong about its current reporting on Wakefield. (Wakefield got lots of enthusiastic press support from certain elements in the British press when he first published his "findings", so it's not like he's been a press pariah all along.)

    I think we had all better agree to disagree about Wakefield on this board, because I don't think arguments about him are particularly relevant to the issues we face with our illness and the progress of good science and good reporting about it. I for one don't want to make common cause with Wakefield just because Wakefield is an underdog who goes against authority. Not every underdog who goes against authority is equally justified in doing so.

    ETA: I got into it about Wakefield on another thread, not because I felt I would ever change the minds of anyone who is still really determined to believe him, but because I was concerned about the appearance of groupthink on this board and the fact that the commonly expressed views here about how we and Wakefield are all in the same unjustly persecuted boat are so rarely challenged. I personally don't care to be put in that boat, and anyone else who feels that way should feel free to say so. We can disagree civilly here, I hope, and this needs to be a safe place for people to have differing points of view.
     
  20. Chris

    Chris Senior Member

    Messages:
    578
    Likes:
    176
    Victoria, BC
    I agree that the case of Wakefield is quite separate from what is now being done to the WPI in some media. The claim is that Wakefield deliberately falsified information, and was being paid by some outfit to do so. I simply do not know whether this claim is well founded, but it is disturbing, and should be further investigated. Even if well founded, though, it does not by itself totally discredit the possibility that vaccines do damage to some people--that is a much larger question, and in my mind certainly remains open; XMRV was only recently discovered, and has never of course been tested for. Neither have other possible animal sourced retroviruses; the possibility remains that somehow such pathogens have entered the human blood system via vaccines. We shall have to wait and see. Chris
     

See more popular forum discussions.

Share This Page