At Wed, 30 Jul 2003, Michelle wrote:
>
>Dear Kristie - Thank you for acknowledging my post about Thalidimide.
>I am sorry that you are in pain and hope that someday we can all find
>relief. This board can be a wonderful place to find comfort and
>comraderie as well as a great source for information about ARD and
>Chronic Pelvic Pain. You can also find a lot of information by
>searching the archives.
>
>I am so sorry that you now must endure email attacks in addition to your
>pain. The best response may be NO response and hopefully they will go
>away soon!
>
>I don't know if you read this earlier post, but it sheds a little light
>on the problem of people who find pleasure in causing trouble on
>internet message boards and the like.
>
>Wishing you well,
>Michelle
>
>You may have to type in link below if not clickable to read the full
>article.
>
>http://members.aol.com/intwg/trolls.htm
>
>Contains: What is a Troll? Why Does it Matter? What Can be Done about
>Trolls? What Not to Do Impersonation The Webmaster's Challenge What
>about Free Speech? Why Do They Do It? Conclusion Note to Webmasters
>
>Some excerpts: >>>>An Internet "troll" is a person who delights in
>sowing discord on the Internet. Trolls see Internet communications
>services as convenient venues for their bizarre game. For some reason,
>they don't "get" that they are hurting real people. To them, other
>Internet users are not quite human but are a kind of digital
>abstraction. As a result, they feel no sorrow whatsoever for the pain
>they inflict. Indeed, the greater the suffering they cause, the greater
>their 'achievement' (as they see it). At the moment, the relative
>anonymity of the net allows trolls to flourish.
>
>At Wed, 30 Jul 2003, Kristie wrote:
>>
>>I am so sorry about all of this. I explained about how I didn't post
>>that letter about Dr K. I don't know him. I am just a woman in pain
>>that want's help on this board.
>>However, I am still getting nasty emails and threats.
>>If this dosen't change, I just remove myself. But since I did nothing
>>wrong here except be a member, I don't really feel like I should have
>>to. I learn a lot on here. I would like to continue to get the
>>information I really need to have.
>>I feel so bad and my heart is broken that someone is making me look bad.
>>I just hope it get's worked out.
>>I want my body free from pain and my heart as well
>>IF you can give me some advice...I'll take it.
>>Thanks
>>KRistie
>>
>>At Wed, 30 Jul 2003, Dr. David Wiseman wrote:
>>>
>>>Dear All
>>>It seems that my requests to behave nicely on this board have gone
>>>unheeded. As soon as I am technically able I will be removing all the
>>>offending posts.
>>>For fear of repetition:
>>>1. DO NOT make accusations about anyone that you cannot support in a
>>>court of law.
>>>2. Even if you think you can make such accusations, this is not the
>>>place to do it. If you have a gripe against someone - approach them
>>>respectfully and directly. Do not use this board as a battle ground. If
>>>you think you have a valid criticism about anyone, document it
>>>carefully. Summarise the points you want to make (in one or two short
>>>sentences) and then back it up with complete documentation. Do not use
>>>inuendo. It does not stand up in a court of law. It will not stand up
>>>here. Review your case and ask yourself if you are really being to
>>>harsh on the person. Do you really have evidence to support your point?
>>>Give them the benefit of the doubt.
>>>3. DO NOT escalate tensions by responding on this message baord.
>>>Contrary to popular beleif - I do not spend 24 hours a day checking my
>>>email and message board postings. If you see something that looks odd -
>>>please tell either myself or Tracy Joslin (tracy.joslin@adhesions.org)
>>>by email and phone. I cannot guarnatee to remove posts immediately, but
>>>we will try.
>>>4. Avoid the temptation to conduct your war even in email. What you
>>>say will end up on a message baord somewhere, no doubt out of context.
>>>5. We ARE NOT AGAINST DR. Kruschinski. Please stop all allegations to
>>>the contrary. My post of a few weeks ago was fully endorsed by him. He
>>>has told me that some people misinterpreted that post. Again - HE FULLY
>>>ENDORSED THAT POST. We totally resent any accusation that the IAS has
>>>been behind any some smear camapaign. It is not true.
>>>6. We encourage Dr. K (and any other doctor doing this kind of work)
>>>to collect his data and to present them to the medical community. Both
>>>Dr. K and I fully expect that given the severity of the ARD disease,
>>>there will be patients in whom pain or other symptoms will recur after
>>>his, or anyone else's surgery.
>>>7. A message board is not the place to conduct serious medical
>>>research. A patient's perception about their problems is easily
>>>influenced by their expectations and their impressions. By continuing
>>>to post glowing reviews about Dr. K, or anyone use YOU ARE HARMING HIS
>>>CREDIBILITY.
>>>Let me spell this out. By inflating someone's expectations about their
>>>surgery with any doctor, you are going to make them more dissapointed if
>>>even the slightest thing goes wrong. Similarly, any posting of a
>>>problem may prompt a patient to believe that their minor problem may be
>>>similar. Consequently talk of "complications" can be blown out of
>>>proportion. Nonetheless - he has a section in his message board where
>>>he invites people to discuss their problems after surgery.
>>>The section is called:
>>>"Continuing pain after surgery
>>>Here you are welcome to discuss your problems after having surgery ... "
>>>
>>>I do not think this is a terribly good idea to have such a section, but
>>>if you are compelled to discuss problems that is the place to do it.
>>>
>>>I have discussed this frequently with Dr. K and have stressed that we
>>>want him to collect sound and credible data. Please help him to do this
>>>by respecting the rules of this board.
>>>
>>>8. Dr. K has shared with us (as well as posted on his own board)some
>>>preliminary results of his data. I STRESS preliminary becuase they are
>>>legitimately open to some interpretation IN EITHER DIRECTION.
>>>
>>>It seems that there have been some 33 US patients that have seen Dr. K
>>>in the last 11 months or so. Some of them must be excluded from the
>>>analysis for good reasons (eg patients have gallbladder or appendix
>>>operations etc) , leaving 27 patients for analysis. Of these 6 of them
>>>have reported some recurrence of pain or adhesions, which is 21%. THIS
>>>IS A VERY GOOD RESULT, but nonetheless a preliminary one. We will be
>>>happy to revise this estimate when there is full documentation from Dr.
>>>K.
>>>This compares very well with another study (that we will report to you
>>>shortly) in which a US doctor performed similar procedures (using
>>>Seprafilm and conventional laparoscopy) in 19 apparently similar
>>>patients with a 24% rate of return of symptoms.The follow up there was
>>>1-32 months.
>>>The jury is not yet in however becuase we need to see longer follow up
>>>for both studies, as well as data from Dr. K's European patients. We
>>>encourage him to collect these data. Please help him maintain its
>>>credibility by refraining from comment in either direction.
>>>
>>>9. Please note that both Beverly Doucette and Dawn Rose have resigned
>>>from the IAS, at their request. As soon as we are we will remove their
>>>names from the list of support contacts.
>>>
>>>Please let's return to the business of supporting patients in need of
>>>support.
>>>
>>>Thank you
>>>
>>>--
>>>David Wiseman
>>>
>>--
>>Let's be good to ourselves....Kristie
>>
>--
>Michelle
>
-- Let's be good to ourselves....Kristie