Admit when you are wrong

29 September 2011

One of the lessons learned from XMRV is that it’s 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.

  • Sciencewatcher

    Human gammaretorviruses are alive and well.   Unfortunately for the human population.  

  • drosha

    Says the person who have never had an argument based on science, tried to put words into my mouth, believes he can see the future and repeats the same sentence over and over again. What was it… “NCI and WPI never had Vp62 plasmid” repeat after me… TROLL TROLL TROLL

  • drosha

    So are internet trolls…

  • Sciencewatcher

    No the evidence shows they were not contaminated.  Only Silverman’s samples were contaminated with the VP62 plasmid.  Now you see the evidence any further comments claiming such are lies.  So are you honest or liar?  

    http://3.bp.blogspot.com/-LE3KbJjEN2g/TnzsXvAzL0I/AAAAAAAAAEE/Otc07jeQbFs/s1600/Slide07.jpg

    http://1.bp.blogspot.com/-pCSELs4zkeM/TnzsYR_SI9I/AAAAAAAAAEI/JpeGZc6kkyQ/s1600/Slide08.jpg

  • RRM

    Glad I am not incompetent in your eyes then.

    And..[drum roll]…

    “We had VP62 as a clone”
    Judy Mikovits
    And to quote from the ACTUAL Science paper (SOM):

    “Lysates were prepared from”XMRV-VP62-infected Raji (lane1), LNCaP (lane 2) or Sup-T1 (lane 3).”

    No, you must be right. There defintely was no VP62 in the WPI/NCI labs. Despite all the proof there was. Despite no proof it wasn’t. I’ll take just your word for it. Okay….

  • Sciencewatcher

    Can you present a scientific explanation?

  • Sciencewatcher

    They never had the VP62 plasmid in their labs.  What is your problem with this fact?

  • Sciencewatcher

    VP62 plasmid has never been in the WPI or NCI labs.  You wont change that fact.  

  • drosha

    My problem is that you keep repeating that sentence irrespective of the topic of the comment you’re replying to.

  • Sciencewatcher
  • RRM

    And what are the odds of WPI “accidentally” detecting 100% identical sequences over the 300+ bp regions that are sequenced, to the VP62 clone the samples get contaminated with “later”?
    I guess Judy just attracts bad luck.

  • Sciencewatcher

    What is the diversity of all HTLV-1 isolates or the px region of HTLV-1?  That will quickly shut you up.

  • Sciencewatcher

    How do Gammaretroviruses, Deltaretroviruses and Betaretrovriuses propagate?

  • Sciencewatcher

    You problem though.  Facts are good to repeat because they are facts.

  • Kelly Connor

    Drosha, I really can’t understand how you got all of that from my comment! 
      I wanted to explain how *I* felt when I saw the tee-shirt image.  I wish I hadn’t spoken for anyone else.  Sure, Dr. Racaniello is not responsible for all that past history. But he touched a nerve for some of us. Blaming the patients has been a very successful strategy and has made it next to impossible for me personally to stay alive.

    I have not been abusive, here or elsewhere. You don’t know my opinion on the science, because I haven’t given it (I am not qualified).  But I do know that it is a terrible thing to have this illness and I believe we are all stigmatized, XMRV+ or not. I believe the brave people who wore the tee-shirts were trying to be heard and recognized as having a serious illness.

  • drosha

    DNA is the genetic material
    one day is 24 hours
    HIV causes AIDS
    Earth has one moon…

    Those are also facts. I thought it would be good to repeat them.

  • RRM

    I guess the Lombardi study is like a bible to you: the parts that contradict your position, just should not be taken literally.

    [In the spirit of this blogpost, I apologize to others who are offended by my post]

  • RRM

    Uhm, you asked those (irrelevant) questions even before I asked you about the odds of WPI ACCIDENTALLY detecting the same sequence as a contaminant that crept into their samples later.

    How would re-asking those irrelevant questions then shut me up? 

    WPI ACCIDENTALLY found a sequence that was 100% the same as the (partial 300+ kb) sequence of the later contaminant? 

    I PROMISE you I will answer the questions above if you address my question with a reasonable reply.

  • Sciencewatcher

    There is nothing in Lombardi et al. that contradicts that the WPI and NCI have never had the VP62 plasmid in their labs.

  • Sciencewatcher

    Other retroviruses act exactly the same way, but you will ignore what is inconvenient to you religious belief.  

    Silvermans samples in his lab were contaminated with VP62 plasmid.  The evidence proves conclusively that the WPI and NCI samples are not contaminated when they left those labs.  The VP62 plasmid has also conclusively never been in the WPI or NCI labs.  

  • Sciencewatcher

    Good for you. Try this one.  The VP62 plasmid was never in the WPI or NCI labs.

  • ltattoo

    i’ve been sick with me/cfs and fibromyalgia for 15 yrs. i barely understand the science, yet i was offended by the use of your red t-shirt. it was easy to assume that i and my friends, those who hold out hope for research funding, hanging on to life by the tips of our fingers while often wishing we were dead (if you only could feel this illness), that we should now don those shirts. yes, it reminded me of the yellow star, sir. yes, i’m a rat and a moron too. you guys just don’t get it. it’s all fun and game to you, this scientific process. to us, it’s f…ing misery 24/7. ~laura tattoo, astoria, oregon

  • ltattoo

    i’ve been sick with me/cfs and fibromyalgia for 15 yrs. i barely understand the science, yet i was offended by the use of your red t-shirt. it was easy to assume that i and my friends, those who hold out hope for research funding, hanging on to life by the tips of our fingers while often wishing we were dead (if you only could feel this illness), that we should now don those shirts. yes, it reminded me of the yellow star, sir. yes, i’m a rat and a moron too. you guys just don’t get it. it’s all fun and game to you, this scientific process. to us, it’s f…ing misery 24/7. ~laura tattoo, astoria, oregon

  • Compassionisnotaluxury

    Sorry drosha but I’ll never be able to understand how some (especially healthy) people can be so delighted about something turning out to be a false hope for patients. It’s one thing to lobby for science, but gleefully rubbing the failures under people’s noses is something entirely different. You could tell this to patients, but wearing a t-shirt sends a whole different message and is just disrespectful.

    And that’s  what patients are having a problem with. I don’t care if it’s XMRV, HGRVs or anything else, I want patients with ME/CFS t be treated with respect. That would be the quickest way of making sure there is no more “outrage”. Did you notice how people with AIDS became very silent as soon as they were treated correctly? The same will happen when ME/CFS will finally be treated as the very serious disease that it is.

    It’s not “us” and “them”, you or your child could be one of “us” any day, and then you will feel what decades of ignorance and hate will do to you. Let’s see if that doesn’t make your skin a little thinner too.

  • Lunatic

    Sciencewatcher, why did you post fake diagrams? 

  • Laurie B.

    Excuse me, Itattoo?  I’m ill much like you, but I think some in the patient community  are absolutely overreacting to what Professor Raciniolo posted and the way some people are conveying their dissatisfaction, could also be construed as rude.
     
    Think about the post that convinced him.
     
    I don’t think you have to be as sick as we are,  to understand our situation. Yet, you  turn around and say you know the motives of scientist, even though you are not a scientist. Do you not see  how you are contradicting yourself.
     
     Scientist  having fun at the expense of patients?  Come on, that’s ridiculous.  Professor Racaniello is helping us  by going by the science as represented by his blog. Hopefully this will  help us, in the long run.  Compare that to Judy Mikovits who appears to be  so rigid in her preconceived notions, she doesn’t seem to have the capacity to see beyond her own ego,  which is driving her science. Now that’s not helping patients is it?
     
    I know how you feel, how this DD basically sucks. I understand your anger. But I think you are directing it to the wrong place. Do you believe something because it’s what you want to believe or do you want to go by the real science and not the spin because it is more to your liking?
     
    Frankly,  I thought the T Shirt was a rather clever take about the state of the science, but understand why people might not see it that way.  I didn’t interpret it as disrespect to patients.
     
    We don’t have to necessarily accept our illness as I will never accept certain things that happen in this world. However, coming to terms with it can do wonders for our mental health which of course is impacted by this as any chronic condition does.
     
    Let’s not fall into the trap of advocating   by hate but rather advocating by the desire to see things change in a realistic manner.

  • Sciencewatcher

    Mikovits was referring to the blood supply.  They never tested any of the WPI or NCI assays in the blood working group.  Trizol was not added to the PBMCs and the culture times were too long for an assay to protect the blood supply.  

    All the negative papers and the blood working group have used VP62 that has never been found in nature and the viruses found by the WPI and NCI teams are human gammaretroviruses.  So the studies cannot be comparable.  The assays were never diagnostically validated, so again they cannot impede scientifically on the findings.

    So the complaints of patients are scientifically justified.  

  • Sciencewatcher

    So are students without the training to understand their comments are not based in science.

  • Sciencewatcher

    Those are the official slides from Ottawa they are not faked.  Why is ERV presenting pictures on her site that have detail when the originals do not have that detail.  ERVs images have been messed with.

  • Kate

    It seems that most posters are unaware that Science magazine used a very similar image on the first page of its story by Jon Cohen and Martin Enserink, the title of which is “False Positive.” It shows the torso of a male clad in a red t-shirt with block letters that spelled “XMRV Positive.”  (Described, in case my attempt to attach the image does not succeed.)  The photo credit is: M. Hicks, Science. Whether this fact alters the perspective of those who have been offended by Dr. R’s slightly different, but substantially similar, image is for them to decide. But I hope that the president of Columbia (and others to whom the offended Dr. Deckoff Jones has directed her appeal) will be informed about the precedent.

  • Kate

    It seems that most posters are unaware that Science magazine used a very similar image on the first page of its story by Jon Cohen and Martin Enserink, the title of which is “False Positive.” It shows the torso of a male clad in a red t-shirt with block letters that spelled “XMRV Positive.”  (Described, in case my attempt to attach the image does not succeed.)  The photo credit is: M. Hicks, Science. Whether this fact alters the perspective of those who have been offended by Dr. R’s slightly different, but substantially similar, image is for them to decide. But I hope that the president of Columbia (and others to whom the offended Dr. Deckoff Jones has directed her appeal) will be informed about the precedent.

  • Honora

    Thank you, Prof. Racaniello, for this gracious apology.  I am an ME patient who has followed this issue in many venues including your most enjoyable blog.  

    When I saw the entry in question I cringed a little remembering the brave people who stood up at the CFSAC meeting wearing similar t-shirts.  It seemed an unnecessary dig at them – one public face of us.  I thought you probably hadn’t considered that.  I doubted you wanted to make anyone feel foolish.  I’m happy and relieved to see that my assumption was correct.  

    Regarding comments “brimming with vile”:  patients are angry and frustrated and frightened.  They have good reason but it does not bring out the best in them.  Given how widespread this illness is, it’s surprising how few of us are unreasonable despite the fact that so many of us are angry.  You will see the same names attached to immoderate comments again and again.   

    That said, I often agree with the points they make even when the style embarrasses me.  Just as I took a moment to consider your POV when assessing the blog post we are discussing, I take a moment to consider theirs.  I hope you do the same.  Sometimes when people are all riled up and shouting, they are shouting something important, like: FIRE.

    Again, thank you for taking the time to consider the complexity of this situation and for your welcome apology.  Keep up the good work.

  • Honora

    Thank you, Prof. Racaniello, for this gracious apology.  I am an ME patient who has followed this issue in many venues including your most enjoyable blog.  

    When I saw the entry in question I cringed a little remembering the brave people who stood up at the CFSAC meeting wearing similar t-shirts.  It seemed an unnecessary dig at them – one public face of us.  I thought you probably hadn’t considered that.  I doubted you wanted to make anyone feel foolish.  I’m happy and relieved to see that my assumption was correct.  

    Regarding comments “brimming with vile”:  patients are angry and frustrated and frightened.  They have good reason but it does not bring out the best in them.  Given how widespread this illness is, it’s surprising how few of us are unreasonable despite the fact that so many of us are angry.  You will see the same names attached to immoderate comments again and again.   

    That said, I often agree with the points they make even when the style embarrasses me.  Just as I took a moment to consider your POV when assessing the blog post we are discussing, I take a moment to consider theirs.  I hope you do the same.  Sometimes when people are all riled up and shouting, they are shouting something important, like: FIRE.

    Again, thank you for taking the time to consider the complexity of this situation and for your welcome apology.  Keep up the good work.

  • Laurie B.

    So if it’s okay to wear shirts that say people are XMRV+, what’s wrong with a shirt that says people are XMRV-.  being  posted on a personal blog. It’s not logical to say it’s all right  to wear this because we have tested xmrv +, yet  other’s are not allowed to do the same if they tested negative or are going by the science in the BWG.

    One group is brave and the other isn’t?

    This is not your blog. Post on a pro xmrv blog/forum.

    Last time I looked we still have freedom of speech.

    Professor Racaniello, I would love a TShirt that has your blog’s name/or something to the effect of “I listen to the podcast  TWiV, and have the money donated to  the
    CFIDS Association of America

    Food for thought.

  • ltattoo

    oy vey!

  • Cina767

     Unfortunately, the people complaining just can’t come to terms with reality.  XMRV is a dead end.  Let’s move on now.  Let’s not use people as scapegoats because we are upset at the results of the BWG.  Perhaps, mosey on over to the forum that Pat Carter runs and look at all the crazy insults directed at virologists and researchers.  People who live in glass houses shouldn’t throw stones.
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