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!
AVIVA Semi-Finals: National ME/FM Action Network is competing for $100,000
The National ME/FM Action Network in Canada is competing for $100,000 for biomedical research of ME and FM in the Aviva Community Fund contest. With thanks to all who helped, they made it through the first round of voting into the Semi-Finals.
Discuss the article on the Forums.

*2 new* letters, Myra McClue, Annette Whittemore

Discussion in 'XMRV Research and Replication Studies' started by VillageLife, May 5, 2010.

Thread Status:
Not open for further replies.
  1. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    I don't think asking someone about his qualifications is rude in any way. At least not if it's not done in an offending way. It helps people get a picture of the person they're dealing with.
    I don't think you or anyone would want to get surgery from someone who is not an MD or take a flight where the person in the cockpit does not have a licence. So i think it's a totally natural question to ask. And since you state to have a degree, why be offended? It's a reason to be proud.
    If that was rude, then think about how you would have to call some of the things you say.
    By saying that it was rude no matter how i justify it, you prove your way of dealing with matters and other people. Gerwyn's view is the law, what someone else says (if Gerwyn does not agree) is wrong. I will never share that view of the world, but you're free to have it. Just don't expect me to accept it.

    There are many people who are not MDs who go to see a doctor and are certain they have CFS and the doctor tells them they have depression or nothing at all. So you just said that this is arrogant by those patients and that patients should not do that. You act exactly like the people you are fighting yourself.

    And i did not say i have no knowledge of biology whatsoever. I said i have only basic knowledge. But it's not enough to judge these matters.

    I can't check the facts. But i might ask some friends. Anyway, there are at least some examples that i can give you.
    In posting #242 on this thread
    http://www.forums.aboutmecfs.org/showthread.php?5031-German-study-finds-xmrv/page25
    you said
    This might be correct by chance but it's most probably not. And there is no way in the world how you can know this. Unless you went and counted the total number of ME patients diagnosed according to the CCC and you could with certainty determine what number of people from that group are XMRV positive (which is not possible, since there is no reliable enough test available yet).
    Since not all the doctors everywhere in the world work equally careful you can't know how many misdiagnoses are in different countries. And since at this point nobody can be absolutely sure about the prevalence of XMRV around the world and it's role in CFS, it's also impossible to compose a group that represents the global population of PWCFS diagnosed after the CCC and then get an approximative number from analyzing that group. Not to mention the uncertainty of testing for XMRV that would be the same here too.
    Btw, the Science study stated a much lower figure at first (~65%, didn't check now) and then later the WPI gave a higher figure, 99%, if i remember correctly.
    So i think it's unserious to make such a statement.

    In the same posting, you also said
    For the transmittability of the virus, that i was talking about, i don't think this is true. I think, they would check wheter the spouses/partners also have the virus, not what illnesses they develop. You were not exact there.

    Then, in the same thread, in posting # 351 you said
    I think that was in response to one of my postings, but you did not post the quote, so i'm not entirely sure.
    That's not what i said. I said that according to those numbers at least one person out of 9 XMRV positive persons would get CFS. You should not mix things up. And i never said that this was a fact. It was a very simple calculation to get an idea. Just a way to see wheter it's more like 1 out of 20 or 1 out of 1000. And for that purpose it was exact enough, i think.

    With the last part of your posting, i can generally agree. But just to say it again, i don't remember making statements about specific biological issues and then claiming that those were facts.
    And remember. Even if someone here made a wrong statement, it would not change the course of history. The research is not done here and the decisions are not made here. This is not a specific forum about microbiology, even if those things are of course very important. This is a forum about CFS and so you will have to accept that everyone who is connected to that subject, trained or not, is free to voice his opinion. You do not have a moderator's role, neither do i.

    And in response to the last sentence
    i would say: This is probably something Wessely could have said if you only change some little details. See? It's not a free and democratic attitude. People may not share the same views and debate, but it's always essential that anyone who is not acting in an unacceptable way (like insulting people or flooding a forum) is free to say what he thinks.
     
  2. Could Wessely have said that Mikovits et al providing evidence of XMRV infection of T & B cells in CFS is groundless opinion that causes damage?
    He could have said it, but would it have any scientific or logical relevance? After all, anyone can trash talk science which is what he excels at.

    I think we can all understand a simple mind theorist (Wessely) who denies a neuro immune disease (CCC), has no place in commenting on retroviroloy and
    is best ignored as his theories only cause deaths in CCC, CFS, ME, GWS patients by advising patients must not be refered to a specialist for medical investigations.
    (This is highly dangerous advice when dealing with a neuro inflammatory disease with increased rates of heart disease & cancer).

    Mikovits is obviously extremely gifted in her field of work, which is why the scientific consensus is with her, not a denialist of bio-medical science.
    Wessely is only discussed by denying. Without his denying, he would have no place to comment as he is a psychiatrist and out of his depth and field of knowledge
    as a simple MD who is not a retrovirologist, viral researcher or experienced in oncology.

    Conversely, Mikovits is highly experience in scientific exploratoin of viruses and understanding oncogenic processes.
     
  3. Gerwyn

    Gerwyn Guest

    lots of words eric no content
     
  4. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    You should not compare me to them, jace. I don't think i'm the one having dogmatic views here. And this seems to be the problem you have in the UK, that one specific dogmatic view has been adopted and is installed as being "the truth".
     
  5. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    No. But i think he has said that CFS is a "wrong illness belief". And he does not want that belief (that CFS is biological) to be voiced in order not to infect the minds of the vulnerable people that might then go on and have CFS or might refuse his cures. That's what i meant.
     
  6. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    Right. And the earth is flat. But i'm happy if it ends here. Just ignore my future postings (i don't mean that in any offensive way), you don't have to answer, they're not directed at you. I don't post a lot anyway. And i'm not here to take away anything from you, i don't have a problem with your work here.
     
  7. kurt

    kurt Senior Member

    Messages:
    1,132
    Likes:
    176
    USA.Earth
    MODERATOR

    Eric & Gerwyn, please end this feud, which is distracting from the purpose of the forum.

    For the record, if this does not stop I will close this thread and any other where people argue and insult each other continually like this, no matter how subtle and clever they can be.

    Regarding credentials, nobody needs credentials to post here. And in my opinion nobody here has the right to claim superior interpretation of science either. This is not a scientific venue, just a place to talk about issues related to ME/CFS. The researchers have not settled these issues and I don't think we are likely to either right now.
     
  8. Gerwyn

    Gerwyn Guest

    You are entitled to your opinion Kurt.Are you saying a scientist is not in a better position to better interpret science than a non scientist?Good science needs very little interpretation .That is done by the statistical treatment of the results.I am stating fact or making hypothese based on actual observations as any scientist does.Any good scientist also corrects erroneous comments made by lay people about a scientific discipline that they are qualified in.Othewise unfounded opinion propagates and the science becomes subsumed by political agendas.If you see that as arguing and insulting then that is your perogative
     
  9. kurt

    kurt Senior Member

    Messages:
    1,132
    Likes:
    176
    USA.Earth
    The above comments are not 'correcting erroneous comments' but rather they are arguing and insults. You basically said Eric's comments were arrogant and inferior to your own in a way that is a put-down.

    Yes, I am entitled to my opinion as you are also. I agree that a scientist is in a better position to interpret data, however, you are not a scientist, at least I have not seen any published research you claim to have authored. Also, as I pointed out, even if you were a scientist I don't think you could claim any superior interpretation here, given that even the researchers involved do not agree on many points. Even if you do understand some of the science better than most of us, that approach is not appropriate in an open and non-scientific forum like this.

    Please note that I am only talking about your style of posting and discussion. As for the details of the science you quote, I find some of your speculations very interesting, but that is not the issue here.
     
  10. Gerwyn

    Gerwyn Guest

    I have two science degrees Kurt I have worked as a professional scientist,

    My comments were in response to Eric,s posts.

    I am considerably more of a scientist than you are.
    I dont pretend to be someone I am not.You are not in a position to judge whether I am a scientist or not,You are being offensive.

    I leave the speculation to you.That was another offensive comment on your part!Two breaches of the rules in one post!

    perhaps you would be better off looking at the content of my post rather than putting your spin on it.

    If you can find any objectivity in Erics posts please feel free .

    You are not only insulting me but hundreds of thousands of professional scientists who practice science without publishing papers.

    If the judgement of scientific worth is publishing papers then Wesselly must outrank Einstein!

    The vast majority of journals do not judge the scientific merit of what they publish merely its replicability and commercial value in terms of circulation.

    Try telling a biochemist that you dont think that they are scientists because they dont publish papers.

    If I were you I would not hang around for too long after saying that! For someone who complains about sly put downs you dont seem to have any qualms about engaging in that practice yourself
     
  11. kurt

    kurt Senior Member

    Messages:
    1,132
    Likes:
    176
    USA.Earth
    Gerwyn, I was not trying to make any sly putdowns. And your taking offense at those comments I made is really over-reaching. The fact here is that I have seen complaint after complaint from many different forum members about your style of posting and regular put-downs of people. Maybe you are not aware of how things come across, I acknowledge I may have that problem at times as well. But the reality is that all I see here is a pointless argument between you and Eric. And I also fault Eric for his comments, some were also put-downs. Anyway, we need to be able to disagree without everything turning into this type of personal attack fest.

    Also, regarding my comment about your speculations, I was referring to your comments about the CREB gene, which is your speculative causal model for XMRV. You seem to have taken 'speculation' in a wholly negative context, but that was not at all intended as negative or a put-down.
     
  12. Mark

    Mark Acting CEO

    Messages:
    4,532
    Likes:
    2,016
    Sofa, UK
    If I might give a personal perspective on some of the arguments involved here...these are general comments and not specifically related to the exact arguments at hand, which I don't have the inclination to trawl through now...

    I am not a scientist, but a mathematician, and I don't pursue any of these subjects in a professional capacity. However I'm able to read scientific papers, and I dabble in educating myself in anything from quantum mechanics to retrovirology - I'm interested in everything, and not very interested in specialising.

    When I came on this forum, I was really, really shocked to discover just how many of what I thought were my own personal pet theories, and my own personal bizarre symptoms, were absolutely common knowledge and indeed had many published papers giving evidence in support of them. I found myself getting engrossed in the science of XMRV, and discussing and hypothesising about it, with scientists, as a layman. I probably expressed some of my ideas in a very over-confident way at the time, but the discussions that ensued were nevertheless always friendly and constructive.

    It's very important to this forum that ordinary people with ME/CFS can come on, have their say, put forward their ideas and questions, and not get dragged into an aggressive argument. I think that's pretty much always the case, but when arguments like this one between Gerwyn and Eric_s get started, nobody should underestimate how upsetting and offputting that can be to a lot of members, and it can really derail a thread when it happens.

    I've learned an awful lot over the last few months - about the science and politics and history of ME/CFS, and about how to express myself more accurately when I put forward ideas with a degree of uncertainty to them. It's taken time to learn those things, and it's important now that we are all welcoming to people coming fresh to the forum who will mostly have much less depth of knowledge of the background than we have. On the recent threads we are already seeing many of the same old questions coming up again - questions about the WPI science study that have been done to death already, for example.

    It's really important that we show great patience during this time. Really what we need is a set of collated information, summarising the main points about the most significant issues; a big 'FAQ' that we can point people towards when they ask 'newby' style questions. It would save everyone a lot of time, but it isn't clear how we can get to that stage at the moment. The wiki functionality would be key I suppose.

    I don't personally give a stuff what anybody's qualifications are. They will not impress me. I have met some homeless people I consider to be advanced philosophers, and a lot of academics strike me as extremely dense. Simon Wessely is a Professor, I think? So those titles don't really mean a whole lot to me. I assess people based on the intelligence, accuracy, and above all the humanity of what they say. An amateur like me who's read a lot of papers and books can know a lot more about a particular subject than a Dr or Prof who isn't specialised in that particular area.

    My impression of reading Gerwyn's extremely valuable posts is that the majority of the time, he actually does seem to be responding to inaccurate information with accurate information. I think that's an important job, just as Gerwyn says, however I really do wish the emotion could be taken out of it. I think it's terribly undermining of Gerwyn's case sometimes, when a phrase like "sometimes it helps to actually look at the science" is tacked on the end of an otherwise intelligent response. I'm sorry Gerwyn, because I do appreciate what you do, and that you have had a lot of troll-like behaviour to deal with lately, but I really do agree with the other moderators who've commented, and with the many people who have complained (and many have also posted in your defence as well): the put-downs do nothing other than to undermine your argument.

    I've noticed on the Bad Science forum, and amongst academics, that this sort of behaviour - violent and sarcastic arguments, swearing and sarcastic put-downs - appears to be quite normal amongst scientists and academics. Put two scientists together and they like nothing better than to have a good fight, it seems. If the tone remains respectful, a very worthwhile conversation can be had, but normally when they fail to convince each other of their argument, they degenerate into abuse. It vindicates my decision not to go into science. It confirms my impression that people who spend a lifetime in that environment end up very ignorant and childish, and look pretty silly to people from the outside. For a lot of us, growing up is precisely about learning how to control those impulses. That growing up appears not to happen as readily within academia, somehow. Makes me really glad I got out!

    Perhaps I've just rambled again and not made myself clear...so to do so now...I have seen a lot of posts on both sides of the argument between Gerwyn and Eric_s that were clearly against forum rules and forum principles. We don't want to conduct ourselves here in that way, and it makes a lot of hassle for a lot of people when it happens. It really does need to stop, but I don't know how...other than to plead once again with people to show some restraint, and not to try to fight fire with fire, but remember that quietly and calmly speaking the truth in the face of provocation makes your case far more eloquently and convincingly. If one side is simply stating facts and the other side is putting their argument and also randomly calling their 'opponent' names, it's easy to see who's at fault. If both people do that, frankly both look unpleasant and foolish to me. Please just cut out the put-downs and report people when they get personal with you. It should be so simple...
     
  13. Martlet

    Martlet Senior Member

    Messages:
    1,837
    Likes:
    3
    Near St Louis, MO
    MODERATOR: Okay, this is enough. There have been plenty of pleas and warnings about this ongoing feud. Two moderators have become involved and we are receiving endless complaints about the constant bickering. I am closing the thread if there is a single complaint.
     
  14. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    267
    Long Beach, CA
    Hear, hear. What Mark said.

    Some friendly argument can help to elucidate the fine points, but when it turns ugly it harms the community. It diminishes the sense that this is a safe place to discuss things civilly, in a community that will be tolerant of brain fog and varied backgrounds. It's intimidating.

    I can understand that discussions like that can be satisfying, in a way, for the participants, and I wouldn't want to suggest that you not indulge in it. But maybe you could take it offline when it becomes a one-on-one? It has kind of hijacked this thread.

    I don't mean to suggest that I don't value the contributions that Eric and Gerwyn make to the forum. I do. I just don't find this kind of argument helpful. It makes me want to go away. But I don't want to go away, because I think that the community we're building here is important. I think it's important enough to work at civility and kindness to one another.
     
  15. Kati

    Kati Patient in training

    Messages:
    2,129
    Likes:
    1,796
    My credentials, in case someone care, is that I am a human being, and I am a PWME- or at least I believe I am.
     
  16. Gerwyn

    Gerwyn Guest

    You said I was not a scientist.I dont think that taking offense at your comment was in any way overreaching.Do you mean that you have recieved complaint after complaint about my posting style?. I took offence about your comment about my speculation.In my world creating a hypothesis based on observation is a key step in the scientific method.XMRV inserts into CREB.CREB controlls gene expression all over the body.Dysrupton of the reading frame of this gene could cause multsystem effects.Downregulation of CREB has been linked to several neuroendocrine disorders.My approach is merely a hypothesis but it is not speculation.That is what I took offence at.That may not have been your intention but I took offense at the content,style and percieved innuendo. It is quite easy to complain about style and tone but the question is does that complaint have any objective validity?
     
  17. lansbergen

    lansbergen Senior Member

    Messages:
    1,160
    Likes:
    594
    My impression is that this is not questioned on here.
     
  18. Adam

    Adam *****

    Messages:
    495
    Likes:
    1
    Sheffield UK
    Originally posted by Kurt.

    Not sure what you thought you would achieve here Kurt, by posting the above.

    I have highlighted what I think are the worst offences. But in all honesty, I did not need to highlight anything as it should be plain to anyone (whoever they feel inclined to support) where the subtle put downs are. Of course, we all know that is a matter of interpretation, and some will not regard the above as offensive or a putdown.

    I am concerned about Moderators repeating the same ''fact' that more people complain about Gerwyn's posts than about any other forum member. Disclosing this information is IMO, counter-productive. Gerwyn has become singled out. To be fair and transparent, if we follow the logic of disclosure, then surely we should know the full 'facts' of who is complained about and who is doing the complaining?

    Two leagues tables would suffice.

    1) League Table of complained about members.

    2) League Table of members making complaints.


    BTW. I will not complain to anyone Kurt about your style, my interpreation of the subtle nature of your putdowns, your ability/qualifications to comment.

    With regards Gerwyn FWIW I do not think he is a saint. However, he appears to be the best qualified person on the forum to interpret the science, by a country mile.
     
  19. parvofighter

    parvofighter Senior Member

    Messages:
    436
    Likes:
    99
    Canada
    The floggings will continue until morale improves

    Adam nailed it:
    I fail to see how Cort's, AND moderators publicly and openly flogging a member of this forum is productive, and feel impelled to take a stand on this issue. How many members of this forum do you want to lose, that are able to substantively comment on the science of ME/CFS/XMRV? Yes, by all means, discretely impose sanctions if they are required, and particularly if they do not represent an extension of your own biases, which for some are all too transparent.

    However consider the impact of a tasteless public flogging on a market segment seeking scientific learning and psychic succor. Yes, moderating is a thankless task. But it can be done with some decorum, and I would add impartiality from your own biases. This behavior is beneath this forum and its leadership.

    Michael Jackson surrounded himself with yes-men, and look what happened to him.
     
  20. flybro

    flybro Senior Member

    Messages:
    581
    Likes:
    5
    pluto
    I agree with Parvo,

    I am sick to death of a moderattor dropping in from upon high, making un-informed snap judgements and hounding the memebers that have put so much more work into helping us understand this disease.

    Martlett an open statement directly to you, if you cant stand the heat stay out the kitchen, and please stop threatening to close important threads.

    You are a main reason I am looking for another forum, your style of moderation in my opinion is consescending.
     
Thread Status:
Not open for further replies.

See more popular forum discussions.

Share This Page