1. Patients launch a $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!
Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS
Andrew Gladman puts hyperparathyroidism under the microscope, exploring what the disease is, how it can mimic ME/CFS in presentation and how it is treated.
Discuss the article on the Forums.

New research suggests more problems with the Paprotka et al XMRV recombinant paper

Discussion in 'XMRV Research and Replication Studies' started by jace, Feb 1, 2012.

  1. barbc56

    barbc56 Senior Member

    Messages:
    1,247
    Likes:
    631
    I wish I had seen your post. If I understand correctly what your post contained, it seems like a double standard that it was deleted. Unfortunately, it's difficult to discern this since the original post no longer exists.

    However, since Gerwyn/V99/Tingle insist that they are knowledgeable enough about science to make scientific pronouncements and want to be taken seriously, then we should be able to voice the same type of criticisms and analysis that other scientiest are subject to on this and other forums and not have these type of comments considered "personal".

    Extraordinary claims not only require extraordinary evidence but also extraordinary scrutinizing.

    If someone analysis, ERV, Racinello, Lipkin's previous research etc. and it's not considered personal then why not the same standard for Gerwyn, et. al.?

    Unless people are saying not to criticize him because he doesn't have scientific credibility?

    IMHO ;)

    Barb C. :>)

    Changed a word.
  2. Esther12

    Esther12 Senior Member

    Messages:
    5,088
    Likes:
    4,857
    Thanks. There wasn't anything new in it, but some things are worth repeating.

    I know it must be hard to moderate the forum in a way which encourages people with a wide range of different views to post here, but I would like more room for people to criticise one another. I really want people to be able to criticise me... without the help of others it's easy to get caught up in ones own prejudices and biases.
  3. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,261
    Likes:
    1,627
    London
    I'd be less critical of Gerwyn or any patient who genuinely tries to shed light on a scientific top and to help other patients than I would of a researcher or anyone who publiches papers for a living. We can't compare a patient to someone who works in the field and has their health and all the resources at hand that someone to someone like Gerwyn who doesn't.

    That doesn't mean we shouldn't be critical of other patients but there should be respect shown and allowances made for their ill health and the sacrifices some patients make to anaylse things and even to post here.

    I've been helped a lot to understand the science by a variety of patients, doctors and researchers and I am very grateful of this.
  4. barbc56

    barbc56 Senior Member

    Messages:
    1,247
    Likes:
    631
    True debate is respectful. Unfortunately, it seems some people think of debate that doesn't agree with their view as being disrespectful. It's important to be able to step back a bit and try to see the difference between discussing the issues and criticizing someone. It's hard to do as we are only human and our illness is an emotional topic to all of us, but it's worth the effort.

    You don't get a free pass for debate on a topic just because you are ill. That includes me. Debate is not criticism and I don't think that can be repeated enough.

    Debate enables learning and knowledge. How can that be negative?

    Debate away, all!!

    Barb C. :>)
  5. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,261
    Likes:
    1,627
    London
    I do agree Barb,

    However I expect higher standards of behaviour from people who are paid to do a job (like a researcher, scientist with a secure government job) and have lots of money, resources and power, than I do from simple patients who are struggling even to sit at a computer and type.

    Especially if like in the UK, our taxes support some of these research people and we'll be paying their pensions for a long time to come.

    Patients like Gerwyn and others who post here and on other groups are making sacrifices to help us understand. We may not agree with all they say, they may get it wrong at times. I don't think that many people offering us scientific help are talking /posting just for their own egos.

    When we have been debating the XMRV / HGRV papers I value the people who can help me with the science and who can identify the issues from all points of view. Debating for the sake of it is just a waste of time for me personally.
  6. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

    Messages:
    913
    Likes:
    327
    Brisbane, Aust
    In fact many of the perceived problems with V and Gerwyn's posts were as a result of their own me/cfs. Although I never accepted everything they said, I at least understood where their hearts were - can't say the same for the researchers and the 'bad science' posters - they ain't here because of an excess of good will.
  7. Esther12

    Esther12 Senior Member

    Messages:
    5,088
    Likes:
    4,857
    I agree that it's fair to hold those who present themselves as being authorities on a subject to higher standards to those who clearly acknowledge that they are just exhausted patients expressing their personal views about topics they are relatively ill informed about - but I also think that Gerwyn/V99 do often present themselves as speaking with authority.

    I don't claim any authority on XMRV matters (other than very basic points about the benefits of blinding, etc), but I do present myself as speaking with some authority on the manner in which the results from PACE have been manipulated, as I believe that I have done sufficient reading to do so. Were I to be wrong about my claims, and it turns out that somehow (for example) Esther Crawley's recent claim of a 30-40% recovery rate were reasonable, and I had made a series of terrible errors in order to conclude otherwise, then that should lead others to think less of all other claims that I make on these subjects. I would have shown myself to be deeply incompetent, and far too assertive in the promotion of inaccurate claims.

    We can all make errors, and I know that I have in the past, both serious and trivial ones. These should be humbling experiences which lead us to seriously consider what led us astray, and how we can improve our thinking in the future. I think that they should also lead to some sort of explanation and apology. I don't see this sort of response coming from some of those who have made false claims to defend the XMRV/CFS association.

    (Equally - I think that the false claims made by some CFS researchers should undermine further trust in their claims, and require a serious apology and explanation).

    Living with the disability of CFS, and the stigma and prejudices that surround the diagnosis is really difficult, so that leaves me feeling more sympathetic to anyone with these problems - but even if someone's intentions are good, it's still easy for us to get caught up in misleading beliefs or ideological commitments and for that to mean that our actions are unreasonable and damaging.
    TessDeco and Firestormm like this.
  8. barbc56

    barbc56 Senior Member

    Messages:
    1,247
    Likes:
    631
    Absolutely, but that does not excuse the rude behavior/arrogance of anyone and that includes researchers. If we want respect then we have to show the same respect. I think most scientist and researchers are fairly open minded as that is how the scientific method works. You try to disprove your hypothesis. This does not mean all researcher are fair but if I had to go with one or the other, I would most likely choose the scientist who have years and years of training. But it's difficult to know who to put your faith so you have to do a lot of research to see which ones are giving the most correct information.

    You make very good points about the PACE trial. Thanks.

    Barb. C.:>)
  9. Bob

    Bob

    Messages:
    7,432
    Likes:
    8,572
    England, UK
    Do you say that with a sense of irony barb?

    Unfortunately, that's not what I've witnessed in reality. Scientists seem to be the most closed-minded, narrow-minded & single-minded types of people, in my experience, unwilling to consider possibilities that do not conform to their narrowly defined specialised and fixed point of view. Not all of them are like this of course, but many appear to be.

    I come across this in many areas of science, and I'm not just refering to ME.
    It seems to go on in string theory physics, climate science, genetic modification, CFS/ME, psychiatry etc etc etc.

    But maybe I don't get to see the whole picture, because maybe it's the most vocal ones who get the most publicity who are the most ideologically driven and the most narrow-minded. And so maybe I base my views too heavily on the scientists who seek the most publicity.


    I think in reality, most of them set out to prove their hypothesis, with very much determination.

    I think you may have an over-generous opinion of scientists, barb, although maybe I am over-cynical.
  10. barbc56

    barbc56 Senior Member

    Messages:
    1,247
    Likes:
    631
    I may not have been completely clear on this. Here is what I am referring to:


    http://undsci.berkeley.edu/teaching/misconceptions.php#b10
    BTW, this site offers a great insight about how science works.

    Barb C.:>)

    ETA

    Emphasis is mine.
  11. barbc56

    barbc56 Senior Member

    Messages:
    1,247
    Likes:
    631
    Here are some other quotes from the above site which are related to the above questions.

    Barb C.:>)

    ETA Emphasis is mine.
  12. biophile

    biophile Places I'd rather be.

    Messages:
    1,348
    Likes:
    3,977
    I want to believe

    This is more an off-topic comment on the biopsychosocial research than retrovirology, but I really wish I could believe all those noble "corrections" actually applied adequately to ME/CFS research in general. There's just so much spin and ideology involved, and we cannot understand everything ourselves without herculean efforts.
  13. Bob

    Bob

    Messages:
    7,432
    Likes:
    8,572
    England, UK
    Thank you barb.

    I am aware of how the scientific method works, but my personal experience of scientists is closer to your third quote.

    Scientists are human and they can chase after their own biases, dreams, urges, greed, and ideologies etc.

    Hopefully science wins in the end but sometime it takes an awfully long time to get to the truth.

    We only have to look at history to witness the ignorance of scientists, and the abuses of science.
  14. barbc56

    barbc56 Senior Member

    Messages:
    1,247
    Likes:
    631
    Okay, you have piqued my curiosity, I'm not sure what you are saying. Retrovirology doesn't use the Scientific Method?
    Thanks.

    Barm C. :>)
  15. Bob

    Bob

    Messages:
    7,432
    Likes:
    8,572
    England, UK
    Retrovirology does, but individual retrovirolgists might not.

    Barb, if you think that all scientists have the utmost integrity, then you are mistaken.

    It's been quite clear from the whole XMRV saga that many of the scientists who have jumped on board to declare contamination, have not been interested in exploring the issues, but have just set out to prove a point. Possibly either to protect their own interests or their egos. How long did it take to produce the first negative paper for example? It was just a few short weeks wasn't it? And coincidentally, it had Wessely's name associated with it. There was no interest in exploring the science.

    Don't you remember, early on, that the scientists were declaring that XMRV doesn't exist? That it was just an artifact.
    Then they were declaring that XMRV was purely a mouse virus. Just mouse contamination.
    Finally, it was accepted that it is a real virus, and not a mouse virus.
    Now it turns out that many labs and reagents around the world are contaminated with a man-made (almost) human-tissue virus that originated in a human cell line.

    If Judy hadn't had hit the headlines, then we still wouldn't know that, and XMRV would be swimming around in labs, undetected, and possibly infecting lab workers and getting into vaccines.

    Out of all the researchers who have declared contamination, how many have gone on to investigate the antibodies? Or to investigate other variants of XMRV/MRV's. Where is the scientific curiosity?

    The scientists who declared that XMRV VP-62 is a contaminant, originating form the 22RV1 cell line - Why have they come to such a strong conclusion without attempting to explain all of the other sequences of XMRV that have been uploaded to genbank?

    We'll get all the answers in the end, but not all scientists have made useful contributions.

    So, yes, retrovirology uses the scientific method, but individual retrovirologists don't necessarily.
    currer likes this.
  16. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,261
    Likes:
    1,627
    London
    Barb,

    Have you ever read the book "and the band played on" about the early HIV/AIDS days and also the reports about Dr Gallo and his involvement then? It's all very interesting and may shed some light on the ways certain scientists, institutions and retrovirologists in particular behave.
  17. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    769
    Excellent post, Bob. It helps to jog our memories on what has really happened in the last couple of years and how many exciting scientific opportunities have been lost because of the preoccupation with disproving XMRV, a purely negative response.

    Retroviruses threaten the current medical paradigm because their outer membrane if too fragile for them to infect like DNA viruses. They have to spread blood to blood, so a new human retroviral infection requres an explanation of how it started.

    Many new human DNA viruses have been recently discovered and accepted without demur - with none of the controversy we see about "XMRV"

    The specific refusal to accept research involving human retroviruses is politics, not science.

    Whatever happens with Lipkin, this area of science will continue, despite the politics.

    Some researchers will carry on thinking, because their scientific curiosity is vital to them. Thought cannot be stopped, ideas cannot be stopped.

    The MMTV link to breast cancer and primary biliary cirrhosis also wont go away, because these diseases wont go away. Killing "XMRV" will avail nothing.
  18. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    838
    UK
    We can go endlessly on about theories of what science is or is not. That is those lost in the world of their constructs. WE have clear findings - get down to earth to the rest.
  19. Bob

    Bob

    Messages:
    7,432
    Likes:
    8,572
    England, UK
    Yes, MMTV has repeatedly been associated with about 40% of breast cancer samples, and yet no government agency has taken up the research on a large scale, as far as I'm aware. I might be missing something because i haven't looked into this subject closely, but I'd like to know why they aren't investigating it on a large scale.
    ikke2001be and currer like this.
  20. barbc56

    barbc56 Senior Member

    Messages:
    1,247
    Likes:
    631
    It's a leap of logic to think that because I think xmrv is a benign contaminate to mean that I think any virus/retrovirus, even in me/cfs, shouldn't be explored.

    I am aware of the negative study: "No Evidence for the Involvement of XMRV or MCV in the Pathogenesis of Breast Cancer" as discussed on this board but have not seen studies with a 40% figure. Could you site the source(s)? Sounds interesting and I would like to look through them to discuss with my oncology science source.

    Thanks

    Barb C.



    Could you cite your sources for the 40% figure?

See more popular forum discussions.

Share This Page