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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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*2 new* letters, Myra McClue, Annette Whittemore

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

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  1. anciendaze

    anciendaze Senior Member

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    I hope someone remembers that I, who know nothing of prominent British families, suggested the connection between the Sainsburys and psychiatry was personal. If the preliminary work Dr. Mikovits reported on connections between XMRV and autistic spectrum disorders pans out, this suggests a powerful motivation to change the way they fund mental health research.
     
  2. Navid

    Navid Senior Member

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    Standing up for Gerwyn

    I'm writing to defend gerwyn. i hope the slaps on the wrist he's receiving here do not turn him away from the forum. he is one of the forums most valuable members. i don't think he has the softest communication approach, but who cares, he's providing us all with invaluable information and analysis each and every day. politeness is great...but in the end cfid's patients have been polite and understanding for too damn long....

    why are people so willing to find excuses for McClure's actions but get so bent out of shape when judy m or annette whittemore take a fierce offensive stand for cfid's patients. i parallel the way gerwyn "attacks/analyzes" the science here on this board w/the way WPI is fighting for some scientific truth to come out abt cfid's and/or xmrv.

    i guess the point of my post is to say YAY Gerwyn...keep up your sharp, intelligent, non-flowery, maybe not so polite posts...and who the heck cares if you miss a period or use a quote rather than an apostrophe.....(noone seemed to mind that post that did criticize gerwyn's punctuation.)

    it seems like anytime someone from the cfid's camp: Judy M, WPI, Hillary Johnson, Mary Schweitzer...now Gerwyn on this board is loud and brash, they are asked to sit down, be quiet and be polite...it's ridiculous.

    As we can see from the past 20 years sitting around like nice, polite patients has gotten us absolutely no where.

    just my opinion:D
     
  3. Rivotril

    Rivotril Senior Member

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    I feel exactly the same about this, as I said before. For me its fantastic to have members like him on this forum, that have great additional value , there the one that make me coming here.
     
  4. Adam

    Adam *****

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    I appreciate the difficult job you have moderating these kind of threads Martlet. However, both of your interventions on this subject re Gerwyns tone have rather side-stepped the issue I and others and Gerwyn keep making, that is;

    repeating personal opinion, questioning fact, questioning Gerwyn's ability to comment, qualifications is in itself harassment and is causing distress. I know this from speaking to other members. Yes it is done in a subtle fashion. The 'best bullies' are clever. My family has personal experience of this. We know the devestating effect the clever bully can cause. IMO Gerwyn is correct to say, just how much of this is one person expected to put up with it before their remarks become 'cutting'? Gerwyn is not a saint. I do not expect saint-like behaviour from him.

    Cort has made the point that the forum will not be taken over by those wishing to denigrate a bio-medical cause for CFS/ME because there are X number of members, and presumably, only a few pushing these views? What I am seeing is fewer and fewer people getting involved in threads infiltrated by those with 'other agendas'.

    Perhaps we are reaching a crossroads?

    I wonder how much longer I will have the will to speak up?

    I'm not sure I am expressing myself very well, here, however, I hope the gist of what I am saying is clear.

    I am reminded of a Dean Koontz character - Corky Laputa (The Face). Laputa is an anarchist. He does anarchy on a small scale, by for instance, setting neighbour against neighbour by poisoning their dogs and cats, engendering distrust and suspicion. I think we have seen some of that on here and I wonder how many more valued members (George and Parvofighter for example) we will lose to the subtle bullies, to the doubt mongers?

    yours losing a little faith right now

    Adam
     
  5. starryeyes

    starryeyes Senior Member

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    I really appreciate your posts, Gerwyn. I don't understand all of the science and am not even aware that others are arguing with you over it until I read points you make that indicate they are.

    I can now see that has been happening in this thread. I have to wonder what the motives are of people who come here only to post arguments against the scientific facts about XMRV. It seems like this happens on every thread that discusses the science of XMRV that I've read here on Phoenix Rising. Something fishy is going on and so far, Gerwyn is the only one with the know-how to dispute these detractors.

    I think you do a good job of restraining yourself Gerwyn and I'm very glad we have you here defending the truth for all of us.
     
  6. Gerwyn

    Gerwyn Guest

    Martlet how many people actually do say that they find my tone upsetting.

    Cutting remarks come in my direction frequently.

    I believe that my approach does not please everyone.

    Would you care to evaluate Eric.s post towards me and honestly say that it was not offensive.

    i think that I am entitled to defend myself and my reputation.

    If someone insults me I will retaliate.What else would you have me do, let the purveyors of propaganda cause unnecessary distress to the majority of people who read the forum

    .I know some people are not interested in the science but I believe the overwhelming majority are.That is how I write .It is condensed and straightforward.

    Tone is an interpretation and not fact.I do not apologise for being direct but I have never knowingly belittled or insulted anyone.I strongly resent the accusation that I have.Dismantling an argument is not like dismantling a person.If belittling is the issue then i am not the guilty party, there are however many members of the forum who are guilty of that charge.They engage in it repeatedly without censure of any kind

    It is therefore somewhat ironic when someone who takes the position of supporting high quality research which could lead to a cure and defending it against spurious attacks is castigated when the detractors with various axes to bear are not.

    I,m sorry if you find the contents of my post offensive.I am in control of that.I am not however in control of what people read into my posts.That is a function of their mind and not mine.

    I express my views honestly and sincerely and if that upsets people because they don't like what they hear then that is not my fault
     
  7. Ever Hopeful

    Ever Hopeful

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    This is my first post besides introducing myself, but after reading some of this thread I felt I had to put my 2 cents in, too. I really agree with Shebacat's reply. I wanted to add to this discussion because I really depend on Gerwyn's "translation" of complex medical studies/theories. I also highly value her opinions and would be very disappointed if she was no longer contributing. I think she is an incredibly valuable member on this forum for her scientific knowledge and honesty. When I tell people to check out the forum, I tell them specifically to look for Gerwyn's comments/opinions. Please, please, please Gerwyn - continue helping us! We really do need you and thank you for all of the great work you do!
     
  8. Knackered

    Knackered Guest

    I feel the same way, thanks Gerwyn.

    It seems the general consensus on this forum is that everyone's on the side of Gerwyn and not a single person find any of his posts objectionable. Gerwyn's the only person on this forum capable of translating the science down to the level of us plebs and we're being told we have to hold the opinion of someone who states:

    To the same regard.

    Roughtly translated:
    I have no understanding of retro-virology, virology, immunology or medicine yet I feel conceitedly confident enough to debate it with someone who actually does, and then complain when I'm called out on my nonsense.

    Sort of saying "I'm wrong on purpose".

    It's kind of like when you're a child and fall over and say "I meant to do that!"
     
  9. Martlet

    Martlet Senior Member

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    What I would have you do is to report the offensive post to us so that we can deal with it. There are very few of us and a lot of members. We can't possibly read every post on every thread so have to rely on members letting us know when someone is overstepping the mark. You are a very valued member of this community, so please don't doubt that, but I can't take sides. If someone is being deliberately offensive to you, please click that "report post" button.
     
  10. oerganix

    oerganix Senior Member

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    "There they go again"

     
  11. Martlet

    Martlet Senior Member

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    Again, there have been numerous reports going back a week, so clearly not everyone shares that opinion. What I am asking is simple. If someone is offended by something someone else has written, then report it, using the button provided for that purpose, so that we can deal with it. That way, members don't have to yell back and if we find that someone has come only to cause trouble - as some do - then we can take appropriate action. So please - use that report post button and let us know what your complaint is, then we can home right in on it and get it sorted.
     
  12. Knackered

    Knackered Guest

    It's people hitting the report button?

    Person X says something to Gerwyn, Gerwyn retorts, Person X doesn't like it then hits the report button?

    Then Gerwyn's made to look the bad guy.
     
  13. akrasia

    akrasia Senior Member

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    :DMy method of learning irritates many because I do make statements that get knocked down, in order to find my weaknesses quickly.

    Thanks to Knackered for the selection. As Adam pointed out Gerwyn is being set up by passive aggressive strategies, forced to repeat over and over his basic points while his interlocutor frames the exercise as a pedagogical experience, while repeating shop worn canards and appealing to authority for validation. in my view it is enormously generous that Gerwyn returns again and again to the fray. I have found his contributions invaluable and completely consistent with the WPI's published explanations regarding methods and outcomes.

    Eric, read Doctor Yes's account of his encounter with "authority" and then swing over to oslersweb.com and have a look at the profile of Anthony Fauci, the AIDS
    Czar.
     
  14. akrasia

    akrasia Senior Member

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    One more thing: This same poster thought it was perfectly all right to mock Gerwyns punctuation, a blatant attempt to trivialize his arguments. (This was not the gentle teasing Gerwyn's idiosyncratic way with the keyboard has sometimes received, given and taken with high affection)
     
  15. natasa778

    natasa778 Senior Member

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    :victory: to that
     
  16. Navid

    Navid Senior Member

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    agreed...there are 2 posters in this thread who show up in various threads just to be SH_T disturbers. they don't believe in WPI's findings...we're all clear on their view, yet they continue to insidiously drop their destructive, sarcastic, argument-provoking comments into threads. one of the posters has even admitted in another thread that she posts things to cause arguments and dissent.....personally i've never seen them post anything informative and/or helpful. I think most ppl know who I mean...yet I have never ever seen either of these posters publicly moderated/admonished...yet gerwyn who IS obviously a very informative/helpful poster is publicly maligned for his tone, politeness and even punctuation...does not seem very fair to me.

    once again, my humble opinion.:worried::D:D
     
  17. ukxmrv

    ukxmrv Senior Member

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    I have followed most of the controversial threads on XMRV. The long discussion between Kurt and Gerwyn was very valuable and because both very generous and tenacious enough to keep talking, many of us (including myself) were better informed on the logic of the arguments and the science.

    Another thread recently languished with very little critical or close attention being paid to it. Gerwyn challenged some of the assumptions there and the result was a thread that came alive with intelligent comments and eventually some mutual understanding. I finally learned about a subject that I had read an entire book on and didn't understand even after that. If Gerwyn had not commented and drawn out the other posters to explain their arguments I wouldn't be in that position.

    However, I have seen other discussions in which Gerwyn appears to be deliberately bated and provoked by people who seem only to be on this forum to start arguments.
     
  18. Martlet

    Martlet Senior Member

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    Then report their posts so we can take a look at them.
     
  19. oerganix

    oerganix Senior Member

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    Just what do you consider to be "basic manners"? Does it include assiduously reasserting misinformation as if it were fact...here in a scientific discussion? Does it include repeating accusations against WPI that have been disproven many times over? Does it include inferring that those of us who respect Gerwyn's contribution here are "forelock-tugging types" who "bow down" etc, etc. It is "mannerly" to lie, obfuscate and try to sow discontent as long as the sh*t stirrer does it politely?

    If you haven't found Gerwyn's posts "particularly helpful because he rarely makes any attempt to explain things a layman would understand", then I suggest you haven't read many of them. As others have stated here recently, he in fact, does explain it layman's terms, when asked to. When poseurs pretend to have knowledge they don't, he responds to them in the language they are trying to speak...all quite appropriate, IMO.

    I find it really disengenuous when someone starts out challenging Gerwyn on the science and when they can't win that way, mano a mano in scientific debate, they start complaining about his "tone", "style", "manners" or punctuation.

    In fact, I haven't seen anyone here defend Gerwyn's "manners"; the closest anyone comes to that is to say they don't matter to that poster, personally. The majority speak to the actual process going on here, which is not a garden party whereby invited guests have a social expectation of "manners". We are in the fight of our lives, to get good research done on our illness. Some of us see a concerted effort to kill WPI and their research before it can even be considered in a rational light, as has been done before. I'm sorry that manners are more important to you than that fight.
     
  20. bel canto

    bel canto Senior Member

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    Originally Posted by Martlet
    Moderator note: How many ways do people have to say that they find your tone upsetting before you will believe them? And how many times will Admin and Moderators have to intervene before you understand that cutting remarks are against the rules - even when used as a last resort? Others are as interested in this topic as you are, including some long-standing members who are never-the-less reporting some of your posts. Please tone it down. You are a valued member but that does not mean you have a free rein to write however you please regardless of other members.

    Martlet,

    If people are offended by other's posts, why can't they publicly say so? It seems unfair to complain privately and have you come in to admonish someone. Isn't it more appropriate for you to evaluate the validity of those complaints and comment accordingly?

    How do the complaints you get compare to the repeated and heartfelt defenses that are on this thread and several others? And, more importantly, please consider the impact of your comment above on many of us - we think it is too strong and admonish and unfair to Gerwin.

    Please read Adam's post # 153 and #165 carefully, including the following:

    Cort has made the point that the forum will not be taken over by those wishing to denigrate a bio-medical cause for CFS/ME because there are X number of members, and presumably, only a few pushing these views? What I am seeing is fewer and fewer people getting involved in threads infiltrated by those with 'other agendas'.

    Perhaps we are reaching a crossroads?

    I wonder how much longer I will have the will to speak up? end of quote

    Admonishing someone for "tone" and ignoring the much more significant issues being brought in response to your admonishment seems unfair and is dispiriti ng.
     
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