Through correspondence with John Javlik, owner and webmaster of the infamous Porphyria Chat page, we have learned disturbing news that needs your immediate attention. As influencial participants in the online Porphyria community, we need to let you know that what you may be reading on John Javlik's Porphyria Chat page may include false, misleading, and DANGEROUS advice. In addition, that chat page has become fertile breeding ground for hostility, harrassment, threats, and other personal attacks. In an effort to make all online Porphyria safe areas for mutual support and trustworthy advice, several Porphyrics have contacted John Javlik to address issues of immediate concern. In a condescending and irresponsible tone, John Javlik responded with the following: Item #1 "...because I do not read, nor censor the page unless there are multiple complaintants who wish someone removed. then, I simply deny them access till they find other avenues of getting on the page..." In other words, he takes NO RESPONSIBILITY for what happens there. Anything can be said, anything can be done. If a complaint is raised, he simply bans that user -- but will allow them access if they find an alternate venue. Item #2 "Since I have no editorial control, legal precident is that I have no more legal liability than the telephone company has for crank calls." How safe and credible can that source be when the webmaster accepts no liability and accepts what has been going on as being nothing more than a "crank call". Harrassment is against the law. So is slander and the irresponsible medical advice being dispensed there, with some participants with RN degrees and others with absolutely no medical background actually dispensing treatment advice: that is much more serious than a "crank call" and could actually result in physical harm to an unsuspecting individual. It could even cause death. And even though these irresponsible acts have been brought to the attention of John Javlik, the webmaster and owner of the chat page, he is unwilling to do even the slightest to make that a more safe and secure site. Item #3 "At most, if I find a reference, I will reset (clear) the page. That is not editorial control." & "I have no idea, because I do not read the pages." These were responses received from John Javlik when specific false and/or dangerous posts were pointed out directly to him. He was asked to remove these specific posts, not delete the whole page. Instead, he says if he finds a reference he will do nothing more than clear or reset the whole entire page. How can he do this if he does not read the pages? In other words, post just about anything you like and it stays. It can be lethal advice but he will not accept any responsibility. In an email sent TO John Javlik from a concerned Porphyric, this was the exact point that was trying to made. In reference TO John Javlik as webmaster and owner the Mall-Net.com Porphyria Chat site, this was said TO him: " As webmaster you, John, not only have the ability, you have the responsibility, to monitor for such infractions of the law. " In his canned response to almost every issue addressed to him, his simple response to that specific item was: "No, according to legal precident, since I do not exert editorial control, I am no more responsible for what is there, than the telephone company is repsonsible for crank calls. If you are after someone, you need to address the specific person, not me. > >-javilk- webmaster, mall-net.com" Let it be known that no one is "after" anyone. Concerned Porphyrics are trying to see that all forums exercise some control in keeping all chats, bulletins boards, webpages, elists, and other Porphyria forums safe for ALL participants. Be they old-timers who can recognize the deceptions, lies, false medical information, and personal slander or attacks. Or especially be it a newcomber who may stumble upon one of the out-of-control forums, read an intentionally dangerous post or one posted from someone who is just misformed, and take that post to be "the gospel" and as something accepted or recommended by the medical community. Lord help them if they follow the advice of some dangerous post. Since John Javlik as owner and webmaster of the Mall-Net.com Porphyria chat has taken such a hands-off approach to administering what presents itself as a credible Porphyria resource, at this time we feel it necessary to issue a WARNING to all Porphyrics that this site should be avoided until more strict control be exercised at that site. If John Javlik will not act responsibility as the owner and webmaster, maybe it would be wise he appoint a moderator to routinely screen the chat and remove any post deemed dangerous, obnoxious, attacking, threatening, or intending to incite an online feud. Either that, or do the responsible thing and remove the chat page once and for all. There are far more credible and safe sources for Porphyria information. Sources that have instituted strict participant guidelines which enforce proper netiquette and safe distribution of medical and Porphyria information. We highly recommend you find an alternative. It is high time the Porphyria community band together and demand a more responsible online community. That includes all participants: the participants, the moderators, the webpage/website owners, the chat masters, the elist sponsors, EVERYONE! No one should be constantly subjected to online abuse and false or misleading information. At this time, we urge you to boycott John Javliks Mall-Net.com Porphyria Chat UNTIL it becomes a responsible forum for interaction. In addition, a group of concerned Porphyrics (which should include you) will immediately begin monitoring all Porphyria web sites, and if warnings or such need to be issued for other sites, we will begin by contacting the webmaster for help in gaining some control over anything that has become out-of-control. If that webmaster is unwilling to help, we will issue public warnings about that site as well. << A group of concerned Porphs who have finally taken a rightful stance for ethical behavior online. >>
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