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!
A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
Discuss the article on the Forums.

Hilary Johnson tweets... Sounds like fix is in on Lipkin study

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by VillageLife, Jul 13, 2012.

  1. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom
    Just seen this tweet from Hilary Johnson....

    @oslersweb: Sounds like fix is in on Lipkin study. Instead of prayer, how about Occupy NIAID? Remember, all roads lead to Fauci. http://www.ageofautism.com/2012/07/a-time-for-prayer.html



    The link Hilary provides takes you to an article by age of autism about a scientist who if he doesn't Put his name to a paper he may be fired and have his pension taken away.



    This is the part about the scientist......




    And in the spirit of truth I must inform you of a situation which I believe not only concerns the autism community, but many other disease communities as well.
    A good and honest scientist who has given more than forty years of his life to the service of public health is in peril. I understand that we in the autism and other disease communities may look at the medical establishment as a monolithic entity, but this is not true. Just as there were people in the communist system who knew how thouroughly rotten that system was and desired to do good if given a chance, there are similar people in our medical system.
    You ask what threat this scientist finds himself under and I will tell you. They have threatened to fire him and take away his pension. I don't know if they can do it. I don't know if it's a bluff. But it has been threatened. He is supposed to lend his name to a study, the conclusions of which he does not support. It is an assault not just upon the millions of people who suffer from various afflictions, but also on the integrity of scientific research in our country.
    For those who would perpetrate injustice I ask you to reconsider. You do not want to be on the wrong side of history. There are millions of people in the various disease communities who will not forget this planned destruction of an honest scientist. And do not make the mistake of believing we are as weak as we have been in the past. We have learned your methods and we are ready to confront you. I ask that you consider the positive reasons you went into science, the desire to advance the health of the human race, and turn away from this path which seeks only to protect reputations and bureacracies, rather than those who suffer.
    I ask the members of the various disease communities for your prayers for this good scientist who finds himself under threat. I am giving you something specific to pray about. I don't know if the prayers will give him strength to endure what may come, or turn away the hand of those who would seek to do evil to him.
    Please offer your prayers for this good man of science so that he may help our children and those of other disease communities who suffer with their afflictions.
     
  2. alex3619

    alex3619 Senior Member

    Messages:
    7,501
    Likes:
    12,000
    Logan, Queensland, Australia
    I read the Age of Autism blog, the identity of the scientist is not public, and we do not know if it is connected to anything to do with ME. However, if the substance of the claim is true it is regrettable: scientists should have the right to refuse to put their name on a paper which they consider substandard.
     
  3. biophile

    biophile Places I'd rather be.

    Messages:
    1,391
    Likes:
    4,675
    Trust for the government on ME/CFS is in very short supply in this community, and although rumours about threats are concerning and the existence of such threats would be unsurprising, what about the possibility that the results from the Lipkin study are genuinely negative? I would still like to hear what the male scientist in question has to say about why he will not support the outcome, assuming of course it is even related to the Lipkin study. I think many of us have felt for a long time, for various reasons, that an association-positive Lipkin study had always sounded a little too good to be true.

    What would [Occupy NIAID] be based on exactly? Release the 'real' results? Do a 'real' study? Treat ME/CFS as a serious condition with serious funding instead of just lip service? I would support the last version, the others have serious potential for backfiring if the study result was found to be genuinely negative after a full investigation. Can you imagine how low the reputation and morale of the ME/CFS community would sink in such an outcome?

    It has been almost 3 years since the publication of Lombardi et al (2009). All I want is competence and honesty in the research. My very limited impressions of Lipkin himself were positive. I do not have enough confidence in the government to feel really 'comfortable' about letting them sort it all out, but neither do I have the capacity to explore the entire saga to decide for myself what is really going on, so I have to be relatively 'agnostic' on the issue and see what happens.

    I was always reluctant to throw myself into researching HGRV in much detail before an association with ME/CFS was more established and accepted, just in case it did not turn out and I had wasted years of time and effort which I needed to spend in other areas of understanding ME/CFS. I am not saying that people who have done this have wasted their time and effort, just that if I did so I would have had to sacrifice other progress I have been gradually making over those 3 years. I stand by this choice, but am always open to new developments.
     
    Bob, justy and barbc56 like this.
  4. acer2000

    acer2000 Senior Member

    Messages:
    594
    Likes:
    247
    Ugh the whole idea behind a "definitive" study on anything is totally non-sensical. If some scientists think there is a connection with retroviruses and ME, let them study it. If they come up with something, great... if not great. If other scientists disagree, why don't they spend their time and money in a positive way and prove a theory they think is a better fit? Instead they seem to be wasting all of our time and resources trying to disprove things.

    Frankly, if all scientists in this study can't come to the same results (and its sounding like they can't) - they should hold off publishing the paper until they figure out why. Thats the only way to really push the field forward. Its a waste of our tax dollars otherwise.

    I'm not usually one for conspiracy theories, but if they are really threatening to take away someone's tenure because they aren't coming up with the same results (instead of doing more research to figure out why) it makes it seem like they are threatened and must have something to hide.
     
    August59 and ukxmrv like this.
  5. barbc56

    barbc56 Senior Member

    Messages:
    1,532
    Likes:
    943
    I take what Kent Hecklebee says with a grain of salt. Remember when he said that Lipkin had been threatened? I don't think anything came from that. I am not saying what he wrote is false but we also don't know if it's true. What he says is a rumor. A rumor which he does not back up.
    Acer wrote:
    If they come up with different results like the previous study, it would be considered a negitive study and the most likely explanation would be contamination. While definitive may be to stringent a word, I would think this result would make scientiest hesitatnt and think twice about doing these kind of studies, if they think nothing will come of them except the same results.
    Barb C.:>)
     
  6. JT1024

    JT1024 Senior Member

    Messages:
    558
    Likes:
    343
    Massachusetts
    This does not surprise me in the least. Politics has negatively impacted science as has pharmaceutical funding for too long.

    Ethics seems to be rare these days. For a scientist to have the balls to stand up and not want to sign his name to a research outcomes or publication , I think that is awesome.

    I work in a clinical laboratory and I will not put my name on something that I believe is wrong. If my boss or anyone else tells me that I have to do something or sign my name to something that I believe is wrong, I will not do it. They know where I stand. In every case to date, they have backed down. They realize at some point that they will be held accountable. Physicians, PhD's, executives, etc may have the power to fire you but good luck to them if they are trying to get you to do something that is unethical, illegal, etc.

    Sorry.. to have one study be the "definitive study" on a connection between ONE retrovirus (XMRV) and ME/CFS demonstrates stupidity or motive. The origin of XMRV still has not been proven and retroviruses from various sources (cell lines, vaccines.. yes, vaccines http://www.abc.net.au/science/articles/2012/07/13/3545318.htm, MLV's, reactivation of HERV's, recombinants, etc) may still be implicated but the ability to detect retroviral infection is obviously a challenge.

    Science is continuing but I believe many scientists are performing their research without publication. Where funding is coming from is a question. However, if so many cell lines have been found to be contaminated or not verified as the cell line that was supposedly being studied, the research community must be having major coniptions. Hell, contaminated or unverified cell lines may nullify their research, their research grants, and may also be a potential source for infection.

    Lipkin is walking a fine line... Whatever role he chooses to take will most likely be his legacy in years to come. That role could obfuscate the science or serve to move it forward. He does have a choice... as does the scientist that does not want to sign his name.
     
    taniaaust1 and Enid like this.
  7. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,043
    Sth Australia
    I believe he probably did get threatened.. a group of ME/CFS patients were al out there to give him a hard time at one point (for no good reason at all other then they just didnt trust someone new to ME/CFS research). They were quite expressive and didnt want him doing the research etc, they even started up a petition trying to stop him and trying to get him pulled from the study. I suspect he would of got some nastry email. (Due to all that.. I set up a group card back then.. to thank him for taking on studying all this and had that sent to him due to all the horridness being directed towards him).
     
  8. Esther12

    Esther12 Senior Member

    Messages:
    5,302
    Likes:
    5,627
    Assuming there's merit to this rumour, and it relates to the Lipkin study:

    I think it's fair to expect those involved in the Lipkin study to put their names on the results they returned, unless there's evidence of a fundamental flaw in the way something was carried out.

    If there are deep disagreements over interpretations, then analysis and interpretation could be included in a separate paper, without the names of those researchers who take a minority position. This would be a rather strange way of doing things, but it sounds fair to me.

    At the moment though, we're so ill informed that there's not much point in considering this stuff imo.

    I wish that we could be confident that all of these sorts of debates would take place in public, with everyone able to see the available evidence. Without that, it is possible that undue pressure and manipulation is taking place behind the scenes.
     
  9. barbc56

    barbc56 Senior Member

    Messages:
    1,532
    Likes:
    943
    I had forgotten about the group card that you started. It was a great idea. Thanks for jogging my memory.

    You may be right about it being patients who were threatening Hecklebee. However, if my memory serves me correctly, something it doesn't always do, I thought the implication was that it was other scientest "against" xmrv.

    Who knows? That's the problem about speculation without knowing the facts.

    I refuse to stress myself over what might be idle speculation. It's a waste of energy, something we don't have with this DD.

    Thanks.

    Barb C.:>)
     
  10. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom
    Is anyone in contact with Hilary Johnson?
     
  11. Bob

    Bob

    Messages:
    8,591
    Likes:
    11,519
    South of England
    I've only just spotted this conversation. I posted my twopennies' worth on another thread, as follows:


    There isn't actually any substance in the Age of Autism blog, is there? Who is the scientist? What is the source of the information? What, allegedly, does the scientist not agree with? At the moment, it's just tantalising and unsubstantiated tittle-tattle/rumour/gossip. I find it a bit annoying and insulting actually. What's the purpose of giving us a bit of unsubstantiated tittle-tattle like that, without any details to back it up?

    Every one involved in the study knew what they were signing up to. They are all highly capable adults, and they signed a contract which said that they had to agree, at least in public, with the outcome of the study.

    The contract could mean, for example, that if they don't find XMRV in the study then all the participants have to agree that XMRV wasn't there to be found.

    As a patient, I knew this, so if anyone signing the contract didn't know that, then they were pretty naive.

    I also 'knew' (an educated guess) that they wouldn't find XMRV in convincing enough proportions for it to be a positive study. (Although, I'm also guessing that they might find a variety of MLV-related viruses, but not in high enough numbers for it to be a positive study. So there could be some very interesting results, even if it is a 'negative' study. And it will be interesting to see the results of Lipkin's deep sequencing.)

    The contract only means that they have to publicly agree with the results of this isolated study, or at least they can't dissent from it. They don't have to sign up to any wider implications of the study. So signing up to the study doesn't stop any of the researchers doing further MLV-related research in the future.

    I expect there to be unlimited MLV-related research in the future, just as MLV-related research has continued to be published recently. For example, looking at an XMRV-related virus (preXMRV2) 'evolving' and being transmitted in wild mice populations:
    http://forums.phoenixrising.me/inde...n-laboratory-and-wild-mice.18402/#post-280484

    So science will move forwards properly, in my opinion, whatever the outcome of this study.

    Personally, I can't buy into any conspiracy with respect to Lipkin. I honestly believe that he will have carried out the study with utmost integrity. He has every reason to. But more than that, Mikovits and colleagues will have carried out their own research to the best of their abilities, and my understanding is that they were consulted and agreed with the methodology from the beginning. The only way I can see that the study could have been corrupted is if there was an active conspiracy to thwart the study, by an outside agency. Well, if that was the case, then we can't do anything about it, but I don't believe that is the case. The truth would have to come out in the end, and I personally think we are moving towards the truth about MLVs and MRVs slowly but surely, as per the paper I gave a link to, above.
     
    barbc56 likes this.
  12. Bob

    Bob

    Messages:
    8,591
    Likes:
    11,519
    South of England
  13. acer2000

    acer2000 Senior Member

    Messages:
    594
    Likes:
    247
    When several groups are looking at the same thing, with different methods, and come up with inconsistent results it is inconclusive not negative. The inconsistent results might be because of contamination in one of the labs. But unless further research is done to confirm and explain that, its just as likely that they are finding something real and the others aren't due to differences in methodology. The point is, we don't know unless they figure it out–so calling such a study "negative" would be a misnomer and also a waste of an opportunity to gain further understanding of a subject. This seems shortsighted from the perspective of the value of scientific research.

    I'd also think that if the inconsistencies were due to contamination in a lab(s) that the researcher responsible would come forward and say that willingly just as Silverman did. If one of the labs isn't willing to put their name on the results, it doesn't seem like they have decided anything definitive about the cause of such an inconsistency at this point in time.
     
    currer and beaker like this.
  14. Bob

    Bob

    Messages:
    8,591
    Likes:
    11,519
    South of England
    Actually, that's not the case in the Lipkin study.
    If any one of the participating research groups has a conclusively positive result, then the study will be declared a positive study.
    Lipkin has always been clear about that.

    If none of the groups has a conclusively positive result, then it will be a negative study, and it might indicate contamination.
    Someone would probably want to try to work out exactly why they were detecting contamination, or why the results were inconclusive.

    (BTW, by 'inconclusive' I mean that sequences are detected, but at the same rates in the controls as the patient samples. But this could also be described as a 'conclusive' negative result, if it is decided that the sequences are a result of contamination. An inconclusive result could also be where more positives were detected in the patient samples, but not at a high enough differential, from the controls, to be convincing.)
     
  15. acer2000

    acer2000 Senior Member

    Messages:
    594
    Likes:
    247
    Well if that was the agreement for this study to be released for publication then thats great. I was speaking in the general sense of what is good for the state of scientific knowledge. And I still disagree that any discrepancy in results necessarily indicates contamination. It very well could be the case, but unless they find and agree that it actually is the case by doing the required additional research, nothing is indicated about the cause of the inconsistency at all–just that it exists. If, like you say, they have agreed to do exactly this, then there isn't a problem. I'd also expect all authors to eventually agree on the final result in that case.

    I also think that natural infection of humans by such retroviruses and contamination of human cell lines is not a mutually exclusive situation. They are human cell lines after all. Actually, it would seem that if a virus family can infect a human cell line it should raise the suspicion that it can infect actual human tissue, not the other way around. Thus, it should encourage more research, not less.
     
    currer likes this.
  16. Bob

    Bob

    Messages:
    8,591
    Likes:
    11,519
    South of England
    Yes, I agree with you. They would need to confirm that it was contamination with further research, before they could conclude that contamination was present, whatever the results.

    However, if the results were 4% positive for patient samples, and 5% positive for control samples (as a hypothetical example), then it's not going to be a very helpful result. And possibly not a particularly interesting result either.

    (So maybe it would be sensible of us wait for the results before we start discussing the implications of the results?)

    I don't know if they've agreed to do further research to fully understand any results that could potentially be due to contamination. I doubt if they've got funding to do that. I just said that someone would probably want to work out why they were getting the results they were getting. I didn't mean that would be part of the study. Sorry if I wasn't clear about that.

    Well, the participants could agree that the results are inconclusive, even if they haven't found the reason for the inconclusive results.

    Agreed.
     
  17. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom
    New
    Hillary has posted a new tweet:

    "Amending previous tweet-Lipkin results known by signatories to non-disclosure statements, few if any others. Eating crow, for now. Patience."
     
  18. barbc56

    barbc56 Senior Member

    Messages:
    1,532
    Likes:
    943
    Is the "eating crow" about another tweet and not the one about the AOA? I am not up to speed on twittering.;)

    It sounds like maybe(?) she is saying that those doing the study, the authors and anyone else involved signed a non-discloser statement to not release the results until officially announced and probably not too many others know this information? So this might mean they know the results?

    Who knows but I am sitting on pins and needles waiting to hear the results. Maybe that's why I am in pain.:lol:

    Barb C.:>)
     
  19. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom
    Another tweet from Hilary Johnson...

    Sorry to confuse or raise blood pressure/ire. Blogs are, well--blogs. Impulsive tweets on these important matters? Worse. Lesson learned.
     
  20. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom

See more popular forum discussions.

Share This Page