Question:
On Sun, 11 Apr 2004 01:28:50 GMT, "Walter C" <wcrosby…@earthlink.net> wrote: >Crawl back under a rock…
It’s becoming clear the character required to be a moderator, and explains volumes. Simple question "jus how many names do you post under"? No need for abuse. – Hide quoted text — Show quoted text ->"IgAN" <nomailfacil…@1230.net> wrote in message >news:92pg709vkpp603bfnsdfs0bcir1a4dttrn@4ax.com… >> On Sat, 10 Apr 2004 20:37:08 GMT, "Walter C" >> <wcrosby…@earthlink.net> wrote: >> Walter C now? was Walter Crosby, then Pierre, just how many names do >> you post under? >> >One last time nutcase — Yahoo requires that any user of a Yahoo group >> >register. However, in return for registration, they ensure that the >group >> >is not spidered and made available by search engines, so there is a level >of >> >anonymity. You must be the one who is a malcontent here, because like I >> >said — there are thousands of people that like using the Yahoo Group web >> >site… >> >"IgAN" <nomailfacil…@1230.net> wrote in message >> >news:hs4f70d1bnpnfa86k7l8jttdkr5m0caqut@4ax.com… >> >> On Sat, 10 Apr 2004 00:42:16 -0400, "Pierre L" <pierro…@hotmail.com> >> >> wrote: >> >> >Now that this subject has come up, and that I have personally been the >> >> >target of statements about my integrity on this newsgroup by an >anonymous >> >> >poster, I should point out that during its last years of existence, >the >> >> >operators of the now defunct www.igan.org seemed to lose interest in >the >> >> >whole subject. The site was rarely updated or maintained. It became >stale >> >> >and outdated, and during the last year or two it was online, it >depended >> >on >> >> >asking if any user was willing to renew it by charging it on their >> >personal >> >> >credit card (not very different than asking for donations). >> >> Oh dear. tut, tut. >> >> >Moreover, the email group it was associated with, for lack of >direction, >> >> >became a haven for hawkers of Chinese herbal medicines and other >> >alternative >> >> >medicines. >> >> Why would you lie? >> >> > I indeed was a member of that group at the time. I thought there >> >> >was a need for a site that provided more realistic assistance to >people >> >who >> >> >have to deal with this very real kidney disease and with advancing >> >chronic >> >> >renal insufficiency on a daily basis, >> >> You advocated doing nothing, the mail archive clearly shows this, you >> >> got very upset when nobody would take you serious and finally stormed >> >> off to start a group that showed promise initially, until we realized >> >> it was heavily biased towards "your opinions" and then eventually >> >> totally censored, in fact you cannot now even view the site without >> >> registering. >> >> > and who have to do so in the real >> >> >world of flank pain, fatigue, high blood pressure, depression, anemia, >> >etc. >> >> >So, to use a sports analogy, I picked up the ball and ran with it, >since >> >> >nobody else seemed interested in doing so. First, I setup a new email >> >group, >> >> >and later, a companion website which serves as the FAQ for that group. >It >> >> >seems to have been successful, so far (1000 plus members). >> >> Which is why it’s important these people are not taken advantage of. >> >> Which is why it’s very suspicious that you choose to censor what they >> >> see or think! why would someone do that? >> >> >We do not have censorship. What we have is a user agreement, and the >> >> >occasional member who deliberately disregards it may be moderated. >It’s >> >not >> >> >a usenet newsgroup, nor is it a public group. It’s a moderated group >> >which >> >> >nevertheless accepts anyone who wants to join and who abides by the >terms >> >of >> >> >reference. >> >> Accepts what you say as gospel? I don’t think so. >> >> >You can rest assured that I make no money from operating the website. >It >> >is >> >> >totally non-commercial, and the small number of donations I get don’t >> >even >> >> >cover my costs, or just barely when they do. Each year, I am very >> >grateful >> >> >to the very small number of patrons who help me out by covering the >> >> >shortfall at year’s end. >> >> Liar. the sums are easy to work out. >> >> >My terrific team of moderators and I, and our many members have helped >> >> >countless hundreds of people who have come to us completely distraught >by >> >> >their diagnosis of kidney disease, and desperate for factual >information >> >> >that their doctors don’t have time to provide. >> >> Much of which you suppress, most of the medicines we have today would >> >> never have been allowed if we had your way of thinking. You are >> >> suppressing the truth, never a good thing. >> >> >For those who are so-inclined, there is another website which >approaches >> >> >IgAN from a homeopathic and naturopathic perspective. It’s the >internet. >> >You >> >> >can go wherever you want. If that’s your thing, go for it. Good luck. >> >When >> >> >IgA nephropathy is still a mild condition, which can literally last >for a >> >> >decade or more, it’s very easy for people to delude themselves into >> >thinking >> >> >these things work, when it’s actually just the usual behaviour of this >> >> >particular disease. >> >> In other words, if we don’t like what mein fuhrer dictates we can go >> >> elsewhere, thanks for confirming that. >> >> >Those of you who know me from my postings on this newsgroup – >> >> >alt.support.kidney-failure – for many years will know that I am a >person >> >of >> >> >integrity, even if you don’t always agree with me, and that my only >> >purpose >> >> >in running www.igan.ca and its associated email group and web forums >is >> >to >> >> >help those who need help, and to provide a community where IgA >> >nephropathy >> >> >patients can meet and discuss things in a welcoming, friendly >> >environment. >> >> On the surface it looks like that, but with recent revelations and a >> >> little digging it would appear untrue, you do suppress much of what >> >> IgAN.Org was about. It seems strange the professionals were an active >> >> part of IgAN.Org and yet there are none that participate in your comic >> >> book site? speaks volumes. >> >> >I gladly invite anyone to visit my website. I’m sure you will find >it’s >> >as >> >> >comprehensive and truthful as it gets. >> >> 1: Look for impartial, independent debate and discussion? >> >> 2: Look for professional participation >> >> There simply is none. You are ripping people off financially and by >> >> denying them the truth. >> >> >I was initially very upset by the postings I saw today about me on >this >> >> >newsgroup, but I guess success does tend to breed some enemies. >> >> Which is why you apparently stormed off from the IgAN.Org service? >> >> >Pierre >> >> >"Walter Crosby" <wcrosby…@earthlink.net> wrote in message >> >> >news:Y2Kdc.2831$zj3.502@newsread3.news.atl.earthlink.net… >> >> >> The Canadian IGAN site (http://www.igan.ca) is not a scam. Neither >is >> >> >> http://health.groups.yahoo.com/group/iga-nephropathy/, which is the >> >> >primary >> >> >> support group. You may be disgruntled because unproven treatments >are >> >not >> >> >> encouraged on those sites, only clinically tested and proven >> >treatments. >> >> >> The Yahoo group was the only active site when I needed it in >December >> >> >> 2000 — there was nothing else at all to provide any assistance for >> >this >> >> >> disease. >> >> >> The moderator or the Yahoo group created the igan.ca site in order >to >> >act >> >> >as >> >> >> a backup in case Yahoo started to release names and email addresses, >or >> >if >> >> >> Yahoo decided to go to a paid site. Members of the Yahoo group >donate >> >> >their >> >> >> own money to continue the operation of that site in order that the >> >creator >> >> >> of the group not have to shell out the money out of his already >limited >> >> >> disability income. >> >> >> I’m offended at the comments that are being made in this group. If >you >> >> >have >> >> >> a problem — why don’t you take it to the thousands of people that >are >> >> >> receiving assistance and information through the secure and >anonymous >> >> >Yahoo >> >> >> Group, rather than this public newsgroup, which requires that people >> >hide >> >> >> behind anonymous postings — how reliable is that? >> >> >> "David Crane" <d…@yahoo.co.uk> wrote in message >> >> >> news:saq470t97vulrdnsh8io0ah1mret7blbcm@4ax.com… >> >> >> > Any help groups out there or lists worth subscribing to? >> >> >> > PS: not the french canadian site which seems to be a scam. >> >> >> > David. >> >> """"""""""""""""""""""""""""""""""""""""""""""""""" >> >> It would seem we need to BEWARE who we seek advice from. >> >> WWW.IGAN.CA is an heavily censored site, this includes >> >> the listserv iga-nephropathy @yahoogroups.com. It is also >> >> run for financial reward, the profits of which solely support it’s >founder >> >> and host Pierre. >> >> The original IgAN help group was www.igan.org hosted by >> >> Russ George. >> >> It is now proposed that the very valuable information on >> >> that website is published once again, so that IgAN >> >> sufferers have a resource they can trust once again. >> >> please note we have no connection with igan.org this >> >> is a public information service. >> >> Much of the information here is direct from www.igan.org website >> >> you will NOT find this valuable information at igan.ca, >> >> because it has been censored by a misfit who left >> >> the real IgAN support group in a sulk and decided to deceive us >> >> with his own website full of misinformation. >> >> Check it out yourselves and compare notes. >> >> Most of the email
… read more »
Response:
Crawl back under a rock… "IgAN" <nomailfacil…@1230.net> wrote in message
news:92pg709vkpp603bfnsdfs0bcir1a4dttrn@4ax.com… – Hide quoted text — Show quoted text -> On Sat, 10 Apr 2004 20:37:08 GMT, "Walter C" > <wcrosby…@earthlink.net> wrote: > Walter C now? was Walter Crosby, then Pierre, just how many names do > you post under? > >One last time nutcase — Yahoo requires that any user of a Yahoo group > >register. However, in return for registration, they ensure that the group > >is not spidered and made available by search engines, so there is a level of > >anonymity. You must be the one who is a malcontent here, because like I > >said — there are thousands of people that like using the Yahoo Group web > >site… > >"IgAN" <nomailfacil…@1230.net> wrote in message > >news:hs4f70d1bnpnfa86k7l8jttdkr5m0caqut@4ax.com… > >> On Sat, 10 Apr 2004 00:42:16 -0400, "Pierre L" <pierro…@hotmail.com> > >> wrote: > >> >Now that this subject has come up, and that I have personally been the > >> >target of statements about my integrity on this newsgroup by an anonymous > >> >poster, I should point out that during its last years of existence, the > >> >operators of the now defunct www.igan.org seemed to lose interest in the > >> >whole subject. The site was rarely updated or maintained. It became stale > >> >and outdated, and during the last year or two it was online, it depended > >on > >> >asking if any user was willing to renew it by charging it on their > >personal > >> >credit card (not very different than asking for donations). > >> Oh dear. tut, tut. > >> >Moreover, the email group it was associated with, for lack of direction, > >> >became a haven for hawkers of Chinese herbal medicines and other > >alternative > >> >medicines. > >> Why would you lie? > >> > I indeed was a member of that group at the time. I thought there > >> >was a need for a site that provided more realistic assistance to people > >who > >> >have to deal with this very real kidney disease and with advancing > >chronic > >> >renal insufficiency on a daily basis, > >> You advocated doing nothing, the mail archive clearly shows this, you > >> got very upset when nobody would take you serious and finally stormed > >> off to start a group that showed promise initially, until we realized > >> it was heavily biased towards "your opinions" and then eventually > >> totally censored, in fact you cannot now even view the site without > >> registering. > >> > and who have to do so in the real > >> >world of flank pain, fatigue, high blood pressure, depression, anemia, > >etc. > >> >So, to use a sports analogy, I picked up the ball and ran with it, since > >> >nobody else seemed interested in doing so. First, I setup a new email > >group, > >> >and later, a companion website which serves as the FAQ for that group. It > >> >seems to have been successful, so far (1000 plus members). > >> Which is why it’s important these people are not taken advantage of. > >> Which is why it’s very suspicious that you choose to censor what they > >> see or think! why would someone do that? > >> >We do not have censorship. What we have is a user agreement, and the > >> >occasional member who deliberately disregards it may be moderated. It’s > >not > >> >a usenet newsgroup, nor is it a public group. It’s a moderated group > >which > >> >nevertheless accepts anyone who wants to join and who abides by the terms > >of > >> >reference. > >> Accepts what you say as gospel? I don’t think so. > >> >You can rest assured that I make no money from operating the website. It > >is > >> >totally non-commercial, and the small number of donations I get don’t > >even > >> >cover my costs, or just barely when they do. Each year, I am very > >grateful > >> >to the very small number of patrons who help me out by covering the > >> >shortfall at year’s end. > >> Liar. the sums are easy to work out. > >> >My terrific team of moderators and I, and our many members have helped > >> >countless hundreds of people who have come to us completely distraught by > >> >their diagnosis of kidney disease, and desperate for factual information > >> >that their doctors don’t have time to provide. > >> Much of which you suppress, most of the medicines we have today would > >> never have been allowed if we had your way of thinking. You are > >> suppressing the truth, never a good thing. > >> >For those who are so-inclined, there is another website which approaches > >> >IgAN from a homeopathic and naturopathic perspective. It’s the internet. > >You > >> >can go wherever you want. If that’s your thing, go for it. Good luck. > >When > >> >IgA nephropathy is still a mild condition, which can literally last for a > >> >decade or more, it’s very easy for people to delude themselves into > >thinking > >> >these things work, when it’s actually just the usual behaviour of this > >> >particular disease. > >> In other words, if we don’t like what mein fuhrer dictates we can go > >> elsewhere, thanks for confirming that. > >> >Those of you who know me from my postings on this newsgroup – > >> >alt.support.kidney-failure – for many years will know that I am a person > >of > >> >integrity, even if you don’t always agree with me, and that my only > >purpose > >> >in running www.igan.ca and its associated email group and web forums is > >to > >> >help those who need help, and to provide a community where IgA > >nephropathy > >> >patients can meet and discuss things in a welcoming, friendly > >environment. > >> On the surface it looks like that, but with recent revelations and a > >> little digging it would appear untrue, you do suppress much of what > >> IgAN.Org was about. It seems strange the professionals were an active > >> part of IgAN.Org and yet there are none that participate in your comic > >> book site? speaks volumes. > >> >I gladly invite anyone to visit my website. I’m sure you will find it’s > >as > >> >comprehensive and truthful as it gets. > >> 1: Look for impartial, independent debate and discussion? > >> 2: Look for professional participation > >> There simply is none. You are ripping people off financially and by > >> denying them the truth. > >> >I was initially very upset by the postings I saw today about me on this > >> >newsgroup, but I guess success does tend to breed some enemies. > >> Which is why you apparently stormed off from the IgAN.Org service? > >> >Pierre > >> >"Walter Crosby" <wcrosby…@earthlink.net> wrote in message > >> >news:Y2Kdc.2831$zj3.502@newsread3.news.atl.earthlink.net… > >> >> The Canadian IGAN site (http://www.igan.ca) is not a scam. Neither is > >> >> http://health.groups.yahoo.com/group/iga-nephropathy/, which is the > >> >primary > >> >> support group. You may be disgruntled because unproven treatments are > >not > >> >> encouraged on those sites, only clinically tested and proven > >treatments. > >> >> The Yahoo group was the only active site when I needed it in December > >> >> 2000 — there was nothing else at all to provide any assistance for > >this > >> >> disease. > >> >> The moderator or the Yahoo group created the igan.ca site in order to > >act > >> >as > >> >> a backup in case Yahoo started to release names and email addresses, or > >if > >> >> Yahoo decided to go to a paid site. Members of the Yahoo group donate > >> >their > >> >> own money to continue the operation of that site in order that the > >creator > >> >> of the group not have to shell out the money out of his already limited > >> >> disability income. > >> >> I’m offended at the comments that are being made in this group. If you > >> >have > >> >> a problem — why don’t you take it to the thousands of people that are > >> >> receiving assistance and information through the secure and anonymous > >> >Yahoo > >> >> Group, rather than this public newsgroup, which requires that people > >hide > >> >> behind anonymous postings — how reliable is that? > >> >> "David Crane" <d…@yahoo.co.uk> wrote in message > >> >> news:saq470t97vulrdnsh8io0ah1mret7blbcm@4ax.com… > >> >> > Any help groups out there or lists worth subscribing to? > >> >> > PS: not the french canadian site which seems to be a scam. > >> >> > David. > >> """"""""""""""""""""""""""""""""""""""""""""""""""" > >> It would seem we need to BEWARE who we seek advice from. > >> WWW.IGAN.CA is an heavily censored site, this includes > >> the listserv iga-nephropathy @yahoogroups.com. It is also > >> run for financial reward, the profits of which solely support it’s founder > >> and host Pierre. > >> The original IgAN help group was www.igan.org hosted by > >> Russ George. > >> It is now proposed that the very valuable information on > >> that website is published once again, so that IgAN > >> sufferers have a resource they can trust once again. > >> please note we have no connection with igan.org this > >> is a public information service. > >> Much of the information here is direct from www.igan.org website > >> you will NOT find this valuable information at igan.ca, > >> because it has been censored by a misfit who left > >> the real IgAN support group in a sulk and decided to deceive us > >> with his own website full of misinformation. > >> Check it out yourselves and compare notes. > >> Most of the email addresses and links appear out of date > >> One day we hope Igan.Org will rise Phoenix like from the ashes > >> and Russ George again in the forefront of IgAN support. > """"""""""""""""""""""""""""""""""""""""""""""""""" > It would seem we need to BEWARE who we seek advice from. > WWW.IGAN.CA is an heavily censored site, this includes > the listserv iga-nephropathy @yahoogroups.com. It is also > run for financial reward, the profits of which solely support it’s founder > and host Pierre.
… read more »
Response:
On Sat, 10 Apr 2004 20:37:08 GMT, "Walter C" <wcrosby…@earthlink.net> wrote:
Walter C now? was Walter Crosby, then Pierre, just how many names do you post under? – Hide quoted text — Show quoted text ->One last time nutcase — Yahoo requires that any user of a Yahoo group >register. However, in return for registration, they ensure that the group >is not spidered and made available by search engines, so there is a level of >anonymity. You must be the one who is a malcontent here, because like I >said — there are thousands of people that like using the Yahoo Group web >site… >"IgAN" <nomailfacil…@1230.net> wrote in message >news:hs4f70d1bnpnfa86k7l8jttdkr5m0caqut@4ax.com… >> On Sat, 10 Apr 2004 00:42:16 -0400, "Pierre L" <pierro…@hotmail.com> >> wrote: >> >Now that this subject has come up, and that I have personally been the >> >target of statements about my integrity on this newsgroup by an anonymous >> >poster, I should point out that during its last years of existence, the >> >operators of the now defunct www.igan.org seemed to lose interest in the >> >whole subject. The site was rarely updated or maintained. It became stale >> >and outdated, and during the last year or two it was online, it depended >on >> >asking if any user was willing to renew it by charging it on their >personal >> >credit card (not very different than asking for donations). >> Oh dear. tut, tut. >> >Moreover, the email group it was associated with, for lack of direction, >> >became a haven for hawkers of Chinese herbal medicines and other >alternative >> >medicines. >> Why would you lie? >> > I indeed was a member of that group at the time. I thought there >> >was a need for a site that provided more realistic assistance to people >who >> >have to deal with this very real kidney disease and with advancing >chronic >> >renal insufficiency on a daily basis, >> You advocated doing nothing, the mail archive clearly shows this, you >> got very upset when nobody would take you serious and finally stormed >> off to start a group that showed promise initially, until we realized >> it was heavily biased towards "your opinions" and then eventually >> totally censored, in fact you cannot now even view the site without >> registering. >> > and who have to do so in the real >> >world of flank pain, fatigue, high blood pressure, depression, anemia, >etc. >> >So, to use a sports analogy, I picked up the ball and ran with it, since >> >nobody else seemed interested in doing so. First, I setup a new email >group, >> >and later, a companion website which serves as the FAQ for that group. It >> >seems to have been successful, so far (1000 plus members). >> Which is why it’s important these people are not taken advantage of. >> Which is why it’s very suspicious that you choose to censor what they >> see or think! why would someone do that? >> >We do not have censorship. What we have is a user agreement, and the >> >occasional member who deliberately disregards it may be moderated. It’s >not >> >a usenet newsgroup, nor is it a public group. It’s a moderated group >which >> >nevertheless accepts anyone who wants to join and who abides by the terms >of >> >reference. >> Accepts what you say as gospel? I don’t think so. >> >You can rest assured that I make no money from operating the website. It >is >> >totally non-commercial, and the small number of donations I get don’t >even >> >cover my costs, or just barely when they do. Each year, I am very >grateful >> >to the very small number of patrons who help me out by covering the >> >shortfall at year’s end. >> Liar. the sums are easy to work out. >> >My terrific team of moderators and I, and our many members have helped >> >countless hundreds of people who have come to us completely distraught by >> >their diagnosis of kidney disease, and desperate for factual information >> >that their doctors don’t have time to provide. >> Much of which you suppress, most of the medicines we have today would >> never have been allowed if we had your way of thinking. You are >> suppressing the truth, never a good thing. >> >For those who are so-inclined, there is another website which approaches >> >IgAN from a homeopathic and naturopathic perspective. It’s the internet. >You >> >can go wherever you want. If that’s your thing, go for it. Good luck. >When >> >IgA nephropathy is still a mild condition, which can literally last for a >> >decade or more, it’s very easy for people to delude themselves into >thinking >> >these things work, when it’s actually just the usual behaviour of this >> >particular disease. >> In other words, if we don’t like what mein fuhrer dictates we can go >> elsewhere, thanks for confirming that. >> >Those of you who know me from my postings on this newsgroup – >> >alt.support.kidney-failure – for many years will know that I am a person >of >> >integrity, even if you don’t always agree with me, and that my only >purpose >> >in running www.igan.ca and its associated email group and web forums is >to >> >help those who need help, and to provide a community where IgA >nephropathy >> >patients can meet and discuss things in a welcoming, friendly >environment. >> On the surface it looks like that, but with recent revelations and a >> little digging it would appear untrue, you do suppress much of what >> IgAN.Org was about. It seems strange the professionals were an active >> part of IgAN.Org and yet there are none that participate in your comic >> book site? speaks volumes. >> >I gladly invite anyone to visit my website. I’m sure you will find it’s >as >> >comprehensive and truthful as it gets. >> 1: Look for impartial, independent debate and discussion? >> 2: Look for professional participation >> There simply is none. You are ripping people off financially and by >> denying them the truth. >> >I was initially very upset by the postings I saw today about me on this >> >newsgroup, but I guess success does tend to breed some enemies. >> Which is why you apparently stormed off from the IgAN.Org service? >> >Pierre >> >"Walter Crosby" <wcrosby…@earthlink.net> wrote in message >> >news:Y2Kdc.2831$zj3.502@newsread3.news.atl.earthlink.net… >> >> The Canadian IGAN site (http://www.igan.ca) is not a scam. Neither is >> >> http://health.groups.yahoo.com/group/iga-nephropathy/, which is the >> >primary >> >> support group. You may be disgruntled because unproven treatments are >not >> >> encouraged on those sites, only clinically tested and proven >treatments. >> >> The Yahoo group was the only active site when I needed it in December >> >> 2000 — there was nothing else at all to provide any assistance for >this >> >> disease. >> >> The moderator or the Yahoo group created the igan.ca site in order to >act >> >as >> >> a backup in case Yahoo started to release names and email addresses, or >if >> >> Yahoo decided to go to a paid site. Members of the Yahoo group donate >> >their >> >> own money to continue the operation of that site in order that the >creator >> >> of the group not have to shell out the money out of his already limited >> >> disability income. >> >> I’m offended at the comments that are being made in this group. If you >> >have >> >> a problem — why don’t you take it to the thousands of people that are >> >> receiving assistance and information through the secure and anonymous >> >Yahoo >> >> Group, rather than this public newsgroup, which requires that people >hide >> >> behind anonymous postings — how reliable is that? >> >> "David Crane" <d…@yahoo.co.uk> wrote in message >> >> news:saq470t97vulrdnsh8io0ah1mret7blbcm@4ax.com… >> >> > Any help groups out there or lists worth subscribing to? >> >> > PS: not the french canadian site which seems to be a scam. >> >> > David. >> """"""""""""""""""""""""""""""""""""""""""""""""""" >> It would seem we need to BEWARE who we seek advice from. >> WWW.IGAN.CA is an heavily censored site, this includes >> the listserv iga-nephropathy @yahoogroups.com. It is also >> run for financial reward, the profits of which solely support it’s founder >> and host Pierre. >> The original IgAN help group was www.igan.org hosted by >> Russ George. >> It is now proposed that the very valuable information on >> that website is published once again, so that IgAN >> sufferers have a resource they can trust once again. >> please note we have no connection with igan.org this >> is a public information service. >> Much of the information here is direct from www.igan.org website >> you will NOT find this valuable information at igan.ca, >> because it has been censored by a misfit who left >> the real IgAN support group in a sulk and decided to deceive us >> with his own website full of misinformation. >> Check it out yourselves and compare notes. >> Most of the email addresses and links appear out of date >> One day we hope Igan.Org will rise Phoenix like from the ashes >> and Russ George again in the forefront of IgAN support.
""""""""""""""""""""""""""""""""""""""""""""""""""" It would seem we need to BEWARE who we seek advice from. WWW.IGAN.CA is an heavily censored site, this includes the listserv iga-nephropathy @yahoogroups.com. It is also run for financial reward, the profits of which solely support it’s founder and host Pierre. The original IgAN help group was www.igan.org hosted by Russ George. It is now proposed that the very valuable information on that website is published once again, so that IgAN sufferers have a resource they can trust once again. please note we have no connection with igan.org this is a public information service. Much of the information here is direct from www.igan.org website you will NOT find this valuable information at igan.ca, because it has been censored by a misfit who left the real IgAN support group in a sulk and decided to deceive us with his own website full of … read more »
Response:
On Sat, 10 Apr 2004 00:42:16 -0400, "Pierre L" <pierro…@hotmail.com> wrote: >Now that this subject has come up, and that I have personally been the >target of statements about my integrity on this newsgroup by an anonymous >poster, I should point out that during its last years of existence, the >operators of the now defunct www.igan.org seemed to lose interest in the >whole subject. The site was rarely updated or maintained. It became stale >and outdated, and during the last year or two it was online, it depended on >asking if any user was willing to renew it by charging it on their personal >credit card (not very different than asking for donations).
Oh dear. tut, tut. >Moreover, the email group it was associated with, for lack of direction, >became a haven for hawkers of Chinese herbal medicines and other alternative >medicines.
Why would you lie? > I indeed was a member of that group at the time. I thought there >was a need for a site that provided more realistic assistance to people who >have to deal with this very real kidney disease and with advancing chronic >renal insufficiency on a daily basis,
You advocated doing nothing, the mail archive clearly shows this, you got very upset when nobody would take you serious and finally stormed off to start a group that showed promise initially, until we realized it was heavily biased towards "your opinions" and then eventually totally censored, in fact you cannot now even view the site without registering. > and who have to do so in the real >world of flank pain, fatigue, high blood pressure, depression, anemia, etc. >So, to use a sports analogy, I picked up the ball and ran with it, since >nobody else seemed interested in doing so. First, I setup a new email group, >and later, a companion website which serves as the FAQ for that group. It >seems to have been successful, so far (1000 plus members).
Which is why it’s important these people are not taken advantage of. Which is why it’s very suspicious that you choose to censor what they see or think! why would someone do that? >We do not have censorship. What we have is a user agreement, and the >occasional member who deliberately disregards it may be moderated. It’s not >a usenet newsgroup, nor is it a public group. It’s a moderated group which >nevertheless accepts anyone who wants to join and who abides by the terms of >reference.
Accepts what you say as gospel? I don’t think so. >You can rest assured that I make no money from operating the website. It is >totally non-commercial, and the small number of donations I get don’t even >cover my costs, or just barely when they do. Each year, I am very grateful >to the very small number of patrons who help me out by covering the >shortfall at year’s end.
Liar. the sums are easy to work out. >My terrific team of moderators and I, and our many members have helped >countless hundreds of people who have come to us completely distraught by >their diagnosis of kidney disease, and desperate for factual information >that their doctors don’t have time to provide.
Much of which you suppress, most of the medicines we have today would never have been allowed if we had your way of thinking. You are suppressing the truth, never a good thing. >For those who are so-inclined, there is another website which approaches >IgAN from a homeopathic and naturopathic perspective. It’s the internet. You >can go wherever you want. If that’s your thing, go for it. Good luck. When >IgA nephropathy is still a mild condition, which can literally last for a >decade or more, it’s very easy for people to delude themselves into thinking >these things work, when it’s actually just the usual behaviour of this >particular disease.
In other words, if we don’t like what mein fuhrer dictates we can go elsewhere, thanks for confirming that. >Those of you who know me from my postings on this newsgroup – >alt.support.kidney-failure – for many years will know that I am a person of >integrity, even if you don’t always agree with me, and that my only purpose >in running www.igan.ca and its associated email group and web forums is to >help those who need help, and to provide a community where IgA nephropathy >patients can meet and discuss things in a welcoming, friendly environment.
On the surface it looks like that, but with recent revelations and a little digging it would appear untrue, you do suppress much of what IgAN.Org was about. It seems strange the professionals were an active part of IgAN.Org and yet there are none that participate in your comic book site? speaks volumes. >I gladly invite anyone to visit my website. I’m sure you will find it’s as >comprehensive and truthful as it gets.
1: Look for impartial, independent debate and discussion? 2: Look for professional participation There simply is none. You are ripping people off financially and by denying them the truth. >I was initially very upset by the postings I saw today about me on this >newsgroup, but I guess success does tend to breed some enemies.
Which is why you apparently stormed off from the IgAN.Org service? – Hide quoted text — Show quoted text ->Pierre >"Walter Crosby" <wcrosby…@earthlink.net> wrote in message >news:Y2Kdc.2831$zj3.502@newsread3.news.atl.earthlink.net… >> The Canadian IGAN site (http://www.igan.ca) is not a scam. Neither is >> http://health.groups.yahoo.com/group/iga-nephropathy/, which is the >primary >> support group. You may be disgruntled because unproven treatments are not >> encouraged on those sites, only clinically tested and proven treatments. >> The Yahoo group was the only active site when I needed it in December >> 2000 — there was nothing else at all to provide any assistance for this >> disease. >> The moderator or the Yahoo group created the igan.ca site in order to act >as >> a backup in case Yahoo started to release names and email addresses, or if >> Yahoo decided to go to a paid site. Members of the Yahoo group donate >their >> own money to continue the operation of that site in order that the creator >> of the group not have to shell out the money out of his already limited >> disability income. >> I’m offended at the comments that are being made in this group. If you >have >> a problem — why don’t you take it to the thousands of people that are >> receiving assistance and information through the secure and anonymous >Yahoo >> Group, rather than this public newsgroup, which requires that people hide >> behind anonymous postings — how reliable is that? >> "David Crane" <d…@yahoo.co.uk> wrote in message >> news:saq470t97vulrdnsh8io0ah1mret7blbcm@4ax.com… >> > Any help groups out there or lists worth subscribing to? >> > PS: not the french canadian site which seems to be a scam. >> > David.
""""""""""""""""""""""""""""""""""""""""""""""""""" It would seem we need to BEWARE who we seek advice from. WWW.IGAN.CA is an heavily censored site, this includes the listserv iga-nephropathy @yahoogroups.com. It is also run for financial reward, the profits of which solely support it’s founder and host Pierre. The original IgAN help group was www.igan.org hosted by Russ George. It is now proposed that the very valuable information on that website is published once again, so that IgAN sufferers have a resource they can trust once again. please note we have no connection with igan.org this is a public information service. Much of the information here is direct from www.igan.org website you will NOT find this valuable information at igan.ca, because it has been censored by a misfit who left the real IgAN support group in a sulk and decided to deceive us with his own website full of misinformation. Check it out yourselves and compare notes. Most of the email addresses and links appear out of date One day we hope Igan.Org will rise Phoenix like from the ashes and Russ George again in the forefront of IgAN support.
Response:
On Sat, 10 Apr 2004 20:37:08 GMT, "Walter C" <wcrosby…@earthlink.net> wrote: >One last time nutcase — Yahoo requires that any user of a Yahoo group >register.
Registration is not the problem, your censorship is. > However, in return for registration, they ensure that the group >is not spidered and made available by search engines, so there is a level of >anonymity.
Now tells us about your suppression of facts? > You must be the one who is a malcontent here,
Do I sound like you then? > because like I >said
Rather you just answered the questions instead of repeating a mantra. > — there are thousands of people that like using the Yahoo Group web >site…
Thousands of hits do not equate to thousands of members you sad, glory seeking control freak. Will you be answering the questions any time soon? – Hide quoted text — Show quoted text ->"IgAN" <nomailfacil…@1230.net> wrote in message >news:hs4f70d1bnpnfa86k7l8jttdkr5m0caqut@4ax.com… >> On Sat, 10 Apr 2004 00:42:16 -0400, "Pierre L" <pierro…@hotmail.com> >> wrote: >> >Now that this subject has come up, and that I have personally been the >> >target of statements about my integrity on this newsgroup by an anonymous >> >poster, I should point out that during its last years of existence, the >> >operators of the now defunct www.igan.org seemed to lose interest in the >> >whole subject. The site was rarely updated or maintained. It became stale >> >and outdated, and during the last year or two it was online, it depended >on >> >asking if any user was willing to renew it by charging it on their >personal >> >credit card (not very different than asking for donations). >> Oh dear. tut, tut. >> >Moreover, the email group it was associated with, for lack of direction, >> >became a haven for hawkers of Chinese herbal medicines and other >alternative >> >medicines. >> Why would you lie? >> > I indeed was a member of that group at the time. I thought there >> >was a need for a site that provided more realistic assistance to people >who >> >have to deal with this very real kidney disease and with advancing >chronic >> >renal insufficiency on a daily basis, >> You advocated doing nothing, the mail archive clearly shows this, you >> got very upset when nobody would take you serious and finally stormed >> off to start a group that showed promise initially, until we realized >> it was heavily biased towards "your opinions" and then eventually >> totally censored, in fact you cannot now even view the site without >> registering. >> > and who have to do so in the real >> >world of flank pain, fatigue, high blood pressure, depression, anemia, >etc. >> >So, to use a sports analogy, I picked up the ball and ran with it, since >> >nobody else seemed interested in doing so. First, I setup a new email >group, >> >and later, a companion website which serves as the FAQ for that group. It >> >seems to have been successful, so far (1000 plus members). >> Which is why it’s important these people are not taken advantage of. >> Which is why it’s very suspicious that you choose to censor what they >> see or think! why would someone do that? >> >We do not have censorship. What we have is a user agreement, and the >> >occasional member who deliberately disregards it may be moderated. It’s >not >> >a usenet newsgroup, nor is it a public group. It’s a moderated group >which >> >nevertheless accepts anyone who wants to join and who abides by the terms >of >> >reference. >> Accepts what you say as gospel? I don’t think so. >> >You can rest assured that I make no money from operating the website. It >is >> >totally non-commercial, and the small number of donations I get don’t >even >> >cover my costs, or just barely when they do. Each year, I am very >grateful >> >to the very small number of patrons who help me out by covering the >> >shortfall at year’s end. >> Liar. the sums are easy to work out. >> >My terrific team of moderators and I, and our many members have helped >> >countless hundreds of people who have come to us completely distraught by >> >their diagnosis of kidney disease, and desperate for factual information >> >that their doctors don’t have time to provide. >> Much of which you suppress, most of the medicines we have today would >> never have been allowed if we had your way of thinking. You are >> suppressing the truth, never a good thing. >> >For those who are so-inclined, there is another website which approaches >> >IgAN from a homeopathic and naturopathic perspective. It’s the internet. >You >> >can go wherever you want. If that’s your thing, go for it. Good luck. >When >> >IgA nephropathy is still a mild condition, which can literally last for a >> >decade or more, it’s very easy for people to delude themselves into >thinking >> >these things work, when it’s actually just the usual behaviour of this >> >particular disease. >> In other words, if we don’t like what mein fuhrer dictates we can go >> elsewhere, thanks for confirming that. >> >Those of you who know me from my postings on this newsgroup – >> >alt.support.kidney-failure – for many years will know that I am a person >of >> >integrity, even if you don’t always agree with me, and that my only >purpose >> >in running www.igan.ca and its associated email group and web forums is >to >> >help those who need help, and to provide a community where IgA >nephropathy >> >patients can meet and discuss things in a welcoming, friendly >environment. >> On the surface it looks like that, but with recent revelations and a >> little digging it would appear untrue, you do suppress much of what >> IgAN.Org was about. It seems strange the professionals were an active >> part of IgAN.Org and yet there are none that participate in your comic >> book site? speaks volumes. >> >I gladly invite anyone to visit my website. I’m sure you will find it’s >as >> >comprehensive and truthful as it gets. >> 1: Look for impartial, independent debate and discussion? >> 2: Look for professional participation >> There simply is none. You are ripping people off financially and by >> denying them the truth. >> >I was initially very upset by the postings I saw today about me on this >> >newsgroup, but I guess success does tend to breed some enemies. >> Which is why you apparently stormed off from the IgAN.Org service? >> >Pierre >> >"Walter Crosby" <wcrosby…@earthlink.net> wrote in message >> >news:Y2Kdc.2831$zj3.502@newsread3.news.atl.earthlink.net… >> >> The Canadian IGAN site (http://www.igan.ca) is not a scam. Neither is >> >> http://health.groups.yahoo.com/group/iga-nephropathy/, which is the >> >primary >> >> support group. You may be disgruntled because unproven treatments are >not >> >> encouraged on those sites, only clinically tested and proven >treatments. >> >> The Yahoo group was the only active site when I needed it in December >> >> 2000 — there was nothing else at all to provide any assistance for >this >> >> disease. >> >> The moderator or the Yahoo group created the igan.ca site in order to >act >> >as >> >> a backup in case Yahoo started to release names and email addresses, or >if >> >> Yahoo decided to go to a paid site. Members of the Yahoo group donate >> >their >> >> own money to continue the operation of that site in order that the >creator >> >> of the group not have to shell out the money out of his already limited >> >> disability income. >> >> I’m offended at the comments that are being made in this group. If you >> >have >> >> a problem — why don’t you take it to the thousands of people that are >> >> receiving assistance and information through the secure and anonymous >> >Yahoo >> >> Group, rather than this public newsgroup, which requires that people >hide >> >> behind anonymous postings — how reliable is that? >> >> "David Crane" <d…@yahoo.co.uk> wrote in message >> >> news:saq470t97vulrdnsh8io0ah1mret7blbcm@4ax.com… >> >> > Any help groups out there or lists worth subscribing to? >> >> > PS: not the french canadian site which seems to be a scam. >> >> > David. >> """"""""""""""""""""""""""""""""""""""""""""""""""" >> It would seem we need to BEWARE who we seek advice from. >> WWW.IGAN.CA is an heavily censored site, this includes >> the listserv iga-nephropathy @yahoogroups.com. It is also >> run for financial reward, the profits of which solely support it’s founder >> and host Pierre. >> The original IgAN help group was www.igan.org hosted by >> Russ George. >> It is now proposed that the very valuable information on >> that website is published once again, so that IgAN >> sufferers have a resource they can trust once again. >> please note we have no connection with igan.org this >> is a public information service. >> Much of the information here is direct from www.igan.org website >> you will NOT find this valuable information at igan.ca, >> because it has been censored by a misfit who left >> the real IgAN support group in a sulk and decided to deceive us >> with his own website full of misinformation. >> Check it out yourselves and compare notes. >> Most of the email addresses and links appear out of date >> One day we hope Igan.Org will rise Phoenix like from the ashes >> and Russ George again in the forefront of IgAN support.
""""""""""""""""""""""""""""""""""""""""""""""""""" It would seem we need to BEWARE who we seek advice from. WWW.IGAN.CA is an heavily censored site, this includes the listserv iga-nephropathy @yahoogroups.com. It is also run for financial reward, the profits of which solely support it’s founder and host Pierre. The original IgAN help group was www.igan.org hosted by Russ George. It is now proposed that the very valuable information on that website is published once again, so that IgAN sufferers have a resource they can trust once again. please note we have no connection with igan.org this is a public information service. … read more »
Response:
On Sat, 10 Apr 2004 20:32:50 GMT, "Walter Crosby" <wcrosby…@earthlink.net> wrote: >As I’ve stated before — you are a nutcase.
It takes a particular kind of control freak nut to want to be a moderator, to suppress research on a very serious disease and to do it for self gratification. Pervert. >Pierre makes nothing from the >site.
Bit like the charity that runs at an admin rate of 99.999999%! > He is an active leader of a site of critical importance to thousands >of people.
Vulnerable people, which is why it’s important they are not conned. > If you want to play around on an unmoderated newsgroup where >your postings are available for non-members to see on google, then keep on >posting here.
I’m sure we will. Perhaps you’d like to try and moderate this too? > The rest of us will go online with the best place to run >these kinds of groups — Yahoo…
Nothing wrong with yahoo, nothing wrong with many listserves, just the one run by igan.ca, unless of course you know others that try to suppress the truth and profit from it? – Hide quoted text — Show quoted text ->"IgAN" <nomailfacil…@1230.net> wrote in message >news:6j5f705s81kgpf2tf96990d6dqnkgn0q4u@4ax.com… >> On Sat, 10 Apr 2004 03:42:48 GMT, "Walter Crosby" >> <wcrosby…@earthlink.net> wrote: >> >The Canadian IGAN site (http://www.igan.ca) is not a scam. Neither is >> >http://health.groups.yahoo.com/group/iga-nephropathy/, which is the >primary >> >support group. You may be disgruntled because unproven treatments are >not >> >encouraged on those sites, only clinically tested and proven treatments. >> You are suppressing information. You are manipulating peoples views by >> your own agenda. You are censoring posts and you are raking it in >> financially, crime and motive there. >> What other support group in the world censors information for it’s >> users? >> >The Yahoo group was the only active site when I needed it in December >> >2000 — there was nothing else at all to provide any assistance for this >> >disease. >> Liar. >> >The moderator or the Yahoo group created the igan.ca site in order to act >as >> >a backup in case Yahoo started to release names and email addresses, or >if >> >Yahoo decided to go to a paid site. Members of the Yahoo group donate >their >> >own money to continue the operation of that site in order that the >creator >> >of the group not have to shell out the money out of his already limited >> >disability income. >> >I’m offended at the comments that are being made in this group. If you >have >> >a problem — why don’t you take it to the thousands of people that are >> >receiving assistance and information through the secure and anonymous >Yahoo >> >Group, rather than this public newsgroup, which requires that people hide >> >behind anonymous postings — how reliable is that? >> Im sure they will be learning well enough once word gets around. Why >> should you be concerned at the truth harming you? >> As for hiding, we have no way of knowing who you really are, obviously >> not "walt" lol and you’re the one censoring information on a very >> serious disease. >> >"David Crane" <d…@yahoo.co.uk> wrote in message >> >news:saq470t97vulrdnsh8io0ah1mret7blbcm@4ax.com… >> >> Any help groups out there or lists worth subscribing to? >> >> PS: not the french canadian site which seems to be a scam. >> >> David. >> """"""""""""""""""""""""""""""""""""""""""""""""""" >> It would seem we need to BEWARE who we seek advice from. >> WWW.IGAN.CA is an heavily censored site, this includes >> the listserv iga-nephropathy @yahoogroups.com. It is also >> run for financial reward, the profits of which solely support it’s founder >> and host Pierre. >> The original IgAN help group was www.igan.org hosted by >> Russ George. >> It is now proposed that the very valuable information on >> that website is published once again, so that IgAN >> sufferers have a resource they can trust once again. >> please note we have no connection with igan.org this >> is a public information service. >> Much of the information here is direct from www.igan.org website >> you will NOT find this valuable information at igan.ca, >> because it has been censored by a misfit who left >> the real IgAN support group in a sulk and decided to deceive us >> with his own website full of misinformation. >> Check it out yourselves and compare notes. >> Most of the email addresses and links appear out of date >> One day we hope Igan.Org will rise Phoenix like from the ashes >> and Russ George again in the forefront of IgAN support.
""""""""""""""""""""""""""""""""""""""""""""""""""" It would seem we need to BEWARE who we seek advice from. WWW.IGAN.CA is an heavily censored site, this includes the listserv iga-nephropathy @yahoogroups.com. It is also run for financial reward, the profits of which solely support it’s founder and host Pierre. The original IgAN help group was www.igan.org hosted by Russ George. It is now proposed that the very valuable information on that website is published once again, so that IgAN sufferers have a resource they can trust once again. please note we have no connection with igan.org this is a public information service. Much of the information here is direct from www.igan.org website you will NOT find this valuable information at igan.ca, because it has been censored by a misfit who left the real IgAN support group in a sulk and decided to deceive us with his own website full of misinformation. Check it out yourselves and compare notes. Most of the email addresses and links appear out of date One day we hope Igan.Org will rise Phoenix like from the ashes and Russ George again in the forefront of IgAN support.
Response:
One last time nutcase — Yahoo requires that any user of a Yahoo group register. However, in return for registration, they ensure that the group is not spidered and made available by search engines, so there is a level of anonymity. You must be the one who is a malcontent here, because like I said — there are thousands of people that like using the Yahoo Group web site… "IgAN" <nomailfacil…@1230.net> wrote in message
news:hs4f70d1bnpnfa86k7l8jttdkr5m0caqut@4ax.com… – Hide quoted text — Show quoted text -> On Sat, 10 Apr 2004 00:42:16 -0400, "Pierre L" <pierro…@hotmail.com> > wrote: > >Now that this subject has come up, and that I have personally been the > >target of statements about my integrity on this newsgroup by an anonymous > >poster, I should point out that during its last years of existence, the > >operators of the now defunct www.igan.org seemed to lose interest in the > >whole subject. The site was rarely updated or maintained. It became stale > >and outdated, and during the last year or two it was online, it depended on > >asking if any user was willing to renew it by charging it on their personal > >credit card (not very different than asking for donations). > Oh dear. tut, tut. > >Moreover, the email group it was associated with, for lack of direction, > >became a haven for hawkers of Chinese herbal medicines and other alternative > >medicines. > Why would you lie? > > I indeed was a member of that group at the time. I thought there > >was a need for a site that provided more realistic assistance to people who > >have to deal with this very real kidney disease and with advancing chronic > >renal insufficiency on a daily basis, > You advocated doing nothing, the mail archive clearly shows this, you > got very upset when nobody would take you serious and finally stormed > off to start a group that showed promise initially, until we realized > it was heavily biased towards "your opinions" and then eventually > totally censored, in fact you cannot now even view the site without > registering. > > and who have to do so in the real > >world of flank pain, fatigue, high blood pressure, depression, anemia, etc. > >So, to use a sports analogy, I picked up the ball and ran with it, since > >nobody else seemed interested in doing so. First, I setup a new email group, > >and later, a companion website which serves as the FAQ for that group. It > >seems to have been successful, so far (1000 plus members). > Which is why it’s important these people are not taken advantage of. > Which is why it’s very suspicious that you choose to censor what they > see or think! why would someone do that? > >We do not have censorship. What we have is a user agreement, and the > >occasional member who deliberately disregards it may be moderated. It’s not > >a usenet newsgroup, nor is it a public group. It’s a moderated group which > >nevertheless accepts anyone who wants to join and who abides by the terms of > >reference. > Accepts what you say as gospel? I don’t think so. > >You can rest assured that I make no money from operating the website. It is > >totally non-commercial, and the small number of donations I get don’t even > >cover my costs, or just barely when they do. Each year, I am very grateful > >to the very small number of patrons who help me out by covering the > >shortfall at year’s end. > Liar. the sums are easy to work out. > >My terrific team of moderators and I, and our many members have helped > >countless hundreds of people who have come to us completely distraught by > >their diagnosis of kidney disease, and desperate for factual information > >that their doctors don’t have time to provide. > Much of which you suppress, most of the medicines we have today would > never have been allowed if we had your way of thinking. You are > suppressing the truth, never a good thing. > >For those who are so-inclined, there is another website which approaches > >IgAN from a homeopathic and naturopathic perspective. It’s the internet. You > >can go wherever you want. If that’s your thing, go for it. Good luck. When > >IgA nephropathy is still a mild condition, which can literally last for a > >decade or more, it’s very easy for people to delude themselves into thinking > >these things work, when it’s actually just the usual behaviour of this > >particular disease. > In other words, if we don’t like what mein fuhrer dictates we can go > elsewhere, thanks for confirming that. > >Those of you who know me from my postings on this newsgroup – > >alt.support.kidney-failure – for many years will know that I am a person of > >integrity, even if you don’t always agree with me, and that my only purpose > >in running www.igan.ca and its associated email group and web forums is to > >help those who need help, and to provide a community where IgA nephropathy > >patients can meet and discuss things in a welcoming, friendly environment. > On the surface it looks like that, but with recent revelations and a > little digging it would appear untrue, you do suppress much of what > IgAN.Org was about. It seems strange the professionals were an active > part of IgAN.Org and yet there are none that participate in your comic > book site? speaks volumes. > >I gladly invite anyone to visit my website. I’m sure you will find it’s as > >comprehensive and truthful as it gets. > 1: Look for impartial, independent debate and discussion? > 2: Look for professional participation > There simply is none. You are ripping people off financially and by > denying them the truth. > >I was initially very upset by the postings I saw today about me on this > >newsgroup, but I guess success does tend to breed some enemies. > Which is why you apparently stormed off from the IgAN.Org service? > >Pierre > >"Walter Crosby" <wcrosby…@earthlink.net> wrote in message > >news:Y2Kdc.2831$zj3.502@newsread3.news.atl.earthlink.net… > >> The Canadian IGAN site (http://www.igan.ca) is not a scam. Neither is > >> http://health.groups.yahoo.com/group/iga-nephropathy/, which is the > >primary > >> support group. You may be disgruntled because unproven treatments are not > >> encouraged on those sites, only clinically tested and proven treatments. > >> The Yahoo group was the only active site when I needed it in December > >> 2000 — there was nothing else at all to provide any assistance for this > >> disease. > >> The moderator or the Yahoo group created the igan.ca site in order to act > >as > >> a backup in case Yahoo started to release names and email addresses, or if > >> Yahoo decided to go to a paid site. Members of the Yahoo group donate > >their > >> own money to continue the operation of that site in order that the creator > >> of the group not have to shell out the money out of his already limited > >> disability income. > >> I’m offended at the comments that are being made in this group. If you > >have > >> a problem — why don’t you take it to the thousands of people that are > >> receiving assistance and information through the secure and anonymous > >Yahoo > >> Group, rather than this public newsgroup, which requires that people hide > >> behind anonymous postings — how reliable is that? > >> "David Crane" <d…@yahoo.co.uk> wrote in message > >> news:saq470t97vulrdnsh8io0ah1mret7blbcm@4ax.com… > >> > Any help groups out there or lists worth subscribing to? > >> > PS: not the french canadian site which seems to be a scam. > >> > David. > """"""""""""""""""""""""""""""""""""""""""""""""""" > It would seem we need to BEWARE who we seek advice from. > WWW.IGAN.CA is an heavily censored site, this includes > the listserv iga-nephropathy @yahoogroups.com. It is also > run for financial reward, the profits of which solely support it’s founder > and host Pierre. > The original IgAN help group was www.igan.org hosted by > Russ George. > It is now proposed that the very valuable information on > that website is published once again, so that IgAN > sufferers have a resource they can trust once again. > please note we have no connection with igan.org this > is a public information service. > Much of the information here is direct from www.igan.org website > you will NOT find this valuable information at igan.ca, > because it has been censored by a misfit who left > the real IgAN support group in a sulk and decided to deceive us > with his own website full of misinformation. > Check it out yourselves and compare notes. > Most of the email addresses and links appear out of date > One day we hope Igan.Org will rise Phoenix like from the ashes > and Russ George again in the forefront of IgAN support.
Response:
As I’ve stated before — you are a nutcase. Pierre makes nothing from the site. He is an active leader of a site of critical importance to thousands of people. If you want to play around on an unmoderated newsgroup where your postings are available for non-members to see on google, then keep on posting here. The rest of us will go online with the best place to run these kinds of groups — Yahoo… "IgAN" <nomailfacil…@1230.net> wrote in message
news:6j5f705s81kgpf2tf96990d6dqnkgn0q4u@4ax.com… – Hide quoted text — Show quoted text -> On Sat, 10 Apr 2004 03:42:48 GMT, "Walter Crosby" > <wcrosby…@earthlink.net> wrote: > >The Canadian IGAN site (http://www.igan.ca) is not a scam. Neither is > >http://health.groups.yahoo.com/group/iga-nephropathy/, which is the primary > >support group. You may be disgruntled because unproven treatments are not > >encouraged on those sites, only clinically tested and proven treatments. > You are suppressing information. You are manipulating peoples views by > your own agenda. You are censoring posts and you are raking it in > financially, crime and motive there. > What other support group in the world censors information for it’s > users? > >The Yahoo group was the only active site when I needed it in December > >2000 — there was nothing else at all to provide any assistance for this > >disease. > Liar. > >The moderator or the Yahoo group created the igan.ca site in order to act as > >a backup in case Yahoo started to release names and email addresses, or if > >Yahoo decided to go to a paid site. Members of the Yahoo group donate their > >own money to continue the operation of that site in order that the creator > >of the group not have to shell out the money out of his already limited > >disability income. > >I’m offended at the comments that are being made in this group. If you have > >a problem — why don’t you take it to the thousands of people that are > >receiving assistance and information through the secure and anonymous Yahoo > >Group, rather than this public newsgroup, which requires that people hide > >behind anonymous postings — how reliable is that? > Im sure they will be learning well enough once word gets around. Why > should you be concerned at the truth harming you? > As for hiding, we have no way of knowing who you really are, obviously > not "walt" lol and you’re the one censoring information on a very > serious disease. > >"David Crane" <d…@yahoo.co.uk> wrote in message > >news:saq470t97vulrdnsh8io0ah1mret7blbcm@4ax.com… > >> Any help groups out there or lists worth subscribing to? > >> PS: not the french canadian site which seems to be a scam. > >> David. > """"""""""""""""""""""""""""""""""""""""""""""""""" > It would seem we need to BEWARE who we seek advice from. > WWW.IGAN.CA is an heavily censored site, this includes > the listserv iga-nephropathy @yahoogroups.com. It is also > run for financial reward, the profits of which solely support it’s founder > and host Pierre. > The original IgAN help group was www.igan.org hosted by > Russ George. > It is now proposed that the very valuable information on > that website is published once again, so that IgAN > sufferers have a resource they can trust once again. > please note we have no connection with igan.org this > is a public information service. > Much of the information here is direct from www.igan.org website > you will NOT find this valuable information at igan.ca, > because it has been censored by a misfit who left > the real IgAN support group in a sulk and decided to deceive us > with his own website full of misinformation. > Check it out yourselves and compare notes. > Most of the email addresses and links appear out of date > One day we hope Igan.Org will rise Phoenix like from the ashes > and Russ George again in the forefront of IgAN support.
Response:
On Sat, 10 Apr 2004 13:15:36 -0400, "Pierre L" <pierro…@hotmail.com> wrote: >Folks, please do look at the website. There is no suppressed information. >Everything that is known about IgAN is there. It’s pretty extensive, so if >you’re looking for a specific thing, I would suggest using the search box on >the main page. As far as studies go, if it’s not mentioned in the text, it’s >linked somewhere on the site.
Not quite now you have changed it. Still a whole lot better than the censored email list which remains heavily censored.? >As for only a few posts on the list, well, if over 1300 posts last month on >the email group is a few, I guess I can’t argue with that.
From a handful of subscribers. >Enough said. My conscience is clean.
Clearly guilt doesn’t sit well with you, hence your attempts to manipulate current IgAN discussion to suit your agenda. I suppose we may as well ask you again….. You seem to have missed the part where we await your explanation for suppressing solid medical information, such as the fish oil trials. I’ll repost it again just in case. and also ask you to answer the following WHY would the founder of igan.ca, the scam igan support group want to suppress such valuable information from igan sufferers and carers? Perhaps he is ain eminently qualified doctor, scientist or professor of medicine, what qualifications does he have to justify suppressing the truth? You "claim" to have over a thousand members, yet only a handful of current posters on your list! is this because you are censoring the rest or is it because people soon get wise and move on? Homeopathy works very well in many cases, for many symptoms, is this another subject you censor? Simple questions. – Hide quoted text — Show quoted text ->"IgAN" <nomailfacil…@1230.net> wrote in message >news:9o8g70pih22b5rqgfml3e0a8f1n5n3rind@4ax.com… >> On Sat, 10 Apr 2004 08:43:45 -0400, "Pierre L" <pierro…@hotmail.com> >> wrote: >> >Sorry about all this being trotted out here by some anonymous malcontent. >We >> >had a couple of people try to convert us to homeopathy recently. >> >Pierre >> You seem to have missed the part where we await your explanation for >> suppressing solid medical information, such as the fish oil trials. >> I’ll repost it again just in case. >> and ask you to answer the following >> WHY would the founder of igan.ca, the >> scam igan support group want to suppress such valuable information >> from igan sufferers and carers? >> Perhaps he is ain eminently qualified doctor, scientist or professor >> of medicine, what qualifications does he have to justify suppressing >> the truth? >> You "claim" to have over a thousand members, yet only a handful of >> current posts on your list! is this because you are censoring the rest >> or is it because people soon get wise and move on? >> Homeopathy works very well in many cases, for many symptoms, is this >> another subject you censor? >> On Sat, 10 Apr 2004 00:32:21 -0700, IgAN <nomailfacil…@1230.net> >> wrote: >> >On Fri, 09 Apr 2004 20:03:58 +0100, IgAN <nomailfacil…@1230.net> >> >wrote: >> >>Literature, Abstracts, and References >> >>"Fish Oil Supplements With Omega-3 Fatty Acids Proves Useful in >> >>Delaying Progress Of IgA Nephropathy" >> >>Fish oil treatment for IgA Nephropathy – A Study by Researchers at the >> >>Mayo Clinic , Adapted from the New England Journal of Medicine, >> >>November 3, 1994) v14 >> >>IgA nephropathy is one of the most common forms of kidney disease, >> >>accounting for up to 10% of cases of end-stage renal disease. Many >> >>forms of therapy for IgA nephropathy have been proposed and evaluated. >> >>Despite early claims of success, until recently none of these >> >>treatments had proven beneficial in double-blind, controlled trials. >> >>Fish oils containing n-3 fatty acids affect eicosanoid and cytokine >> >>production and therefore may alter renal hemodynamics and >> >>inflammation. Three small studies of fish oil therapy in IgA >> >>nephropathy failed to detect beneficial effects. This latest report, >> >>from the Mayo Clinic and collaborating institutions, describes a >> >>larger, multi-center placebo-controlled trial of fish oil in patients >> >>with IgA nephropathy who had persistent proteinuria. In a two-year >> >>trial, 55 patients received fish oil (12 g/ day) and 51 received an >> >>olive oil placebo. The primary end point of the trial was an increase >> >>of 50% or more in serum creatinine concentration, a change indicative >> >>of loss of renal function. This endpoint was reached in three (6%) of >> >>the patients in the fish oil group and 14 (33%) of those in the >> >>placebo group, a highly significant difference. The cumulative >> >>percentage of patients who died or developed end-stage renal disease >> >>after four years was 10% in the fish oil group and 40% in the placebo >> >>group. The authors conclude that in patients with IgA nephropathy, >> >>treatment with fish oil for two years retards the loss of renal >> >>function. James V Donadio Jr, Erik J Berkstralh, Kenneth P Offord, >> >>Dorothy C Spencer, and Keith E Holley for the Mayo Nephrology >> >>Collaborative Group, New England J Medicine 331(18):1194-1199 (3 Nov >> >>1994) [Reprints: James V Donadio, Jr, MD, Division of Nephrology, Mayo >> >>Clinic, 200 First Street, SW, Rochester MN 559051 Charles van Ypersele >> >>de Strihou, Fish Oil for IgA Nephropathy? [Editorial] N England J >> >>Medicine 331(18):1227-1229 (3 Nov 1994) [Correspondence: Charles van >> >>Ypersele de Strihou, MD, University of Louvain Medical School, 1200 >> >>Brussels, Belgium! >> >>Accompanying Editorial - "Fish oil for IgA nephropathy? -The New >> >>England Journal of Medicine Nov 3 '94 p1227(3)" >> >>Fish oil shows promise to delay progression to kidney failure in >> >>patients with immunoglobulin A (IgA) nephropathy, but this finding may >> >>not apply to all patients because of the variability of the disease. >> >>Kidney failure develops in less than half of patients with the >> >>disease, and the time span can be as long as 10 to 20 years after >> >>diagnosis. Results of one study suggest fish oil can slow the >> >>deterioration of the kidney. IgA nephropathy does not progress at the >> >>same rate or degree in all patients so these results may not be >> >>definitive. The follow-up of patients was only three years, a short >> >>time compared to the duration of the disease. Although fish oil may >> >>help and certainly does no harm, control of blood pressure with >> >>angiotensin-converting-enzyme (ACE) inhibitors may protect better >> >>against progressive kidney failure. >> >>IgA Glomerulnephritis - Synopsis of a paper by D. Gwyn Williams, >> >>British Medical Journal >> >>Jan 8, 1994 >> >>IgA nephropathy was first reported twenty-five years ago. It is fast >> >>becoming recognized as the commonest form of glomerulonephritis. >> >>Recent international meetings of kidney disease specialists have >> >>acknowledged that nephrologists still do not know how to treat the >> >>disease. >> >>Two decades of observation have revealed that spontaneous remission >> >>may occur but that 15-20% of patients suffer kidney failure within 10 >> >>years of diagnosis. The risk factors for progression are impaired >> >>renal function at presentation, heavy proteinuria, hypertension, and >> >>curiously, absence of the typical symptom - recurrent macroscopic >> >>hematuria - blood in the urine. IgA nephropathy is shown convincingly >> >>to be systemic by its recurrence in patients who receive kidney >> >>transplants and, more remarkably, by the disappearance of IgA deposits >> >>when a kidney from someone with IgA is transplanted into someone with >> >>renal failure from another cause. >> >>When IgA nephropathy was first described, the fact that IgA is >> >>produced by mucosal cells - had been only recently discovered. The >> >>deposition of IgA in glomeruli was explained as an immune complex >> >>disease in which an antigen or antigens came into contact with the >> >>mucosa and induced an IgA antibody response. This led to >> >>antigen-antibody complexes circulating and being deposited in the >> >>kidneys. In some patients the serum IgA has an increased antibody >> >>activity against food antigens such as gliadin and casein and the >> >>amount of circulating complexes is increased. There is spotty evidence >> >>that the mucosal surfaces are incompetent at one of their normal tasks >> >>- preventing antigen or antigen-antibody complexes from entering the >> >>circulation. As with any disease of unknown cause that is mediated by >> >>the immune system, autoimmunity was invoked. The finding that in some >> >>patients serum IgA is bound to fibronectin or collagen, both normal >> >>constituents of glomeruli; though this binding was later shown not to >> >>be an antigen-antibody combination. >> >>Bone marrow, which produces immunoglobulins, accounts for one third of >> >>normal production of IgA. Patients with IgA nephropathy produce excess >> >>amounts of IgA in their bone marrow[2] – an observation that supports >> >>the systemic nature of IgA nephropathy. B cells in the tonsils have >> >>been shown to produce excess IgA.[3] The abnormal production seems, >> >>then, to affect both the mucosal and non-mucosal compartments. The IgA >> >>in the serum of patients differs qualitatively from that in normal >> >>subjects, and is reflected in the nature of IgA deposits in the >> >>kidneys[4]: IgA in these patients has an increased negative charge and >> >>an increased ratio of [lambda] to [kappa] light chains, and its >> >>carbohydrate content is abnormal – a portion is galactose deficient. >> >>IgA eluted from glomeruli and in the circulating complexes is >> >>polymeric and of the IgA, subclass; the other subclass, IgA[sub. 2], >> >>mainly produced in mucosa, is not found. Understanding of these facts >> >>is incomplete. >> >>Failure
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Response:
Sorry about all this being trotted out here by some anonymous malcontent. We had a couple of people try to convert us to homeopathy recently. Pierre
Response:
On Sat, 10 Apr 2004 08:43:45 -0400, "Pierre L" <pierro…@hotmail.com> wrote: >Sorry about all this being trotted out here by some anonymous malcontent. We >had a couple of people try to convert us to homeopathy recently. >Pierre
You seem to have missed the part where we await your explanation for suppressing solid medical information, such as the fish oil trials. I’ll repost it again just in case. and ask you to answer the following WHY would the founder of igan.ca, the scam igan support group want to suppress such valuable information from igan sufferers and carers? Perhaps he is ain eminently qualified doctor, scientist or professor of medicine, what qualifications does he have to justify suppressing the truth? You "claim" to have over a thousand members, yet only a handful of current posts on your list! is this because you are censoring the rest or is it because people soon get wise and move on? Homeopathy works very well in many cases, for many symptoms, is this another subject you censor? On Sat, 10 Apr 2004 00:32:21 -0700, IgAN <nomailfacil…@1230.net> wrote: – Hide quoted text — Show quoted text ->On Fri, 09 Apr 2004 20:03:58 +0100, IgAN <nomailfacil…@1230.net> >wrote: >>Literature, Abstracts, and References >>"Fish Oil Supplements With Omega-3 Fatty Acids Proves Useful in >>Delaying Progress Of IgA Nephropathy" >>Fish oil treatment for IgA Nephropathy – A Study by Researchers at the >>Mayo Clinic , Adapted from the New England Journal of Medicine, >>November 3, 1994) v14 >>IgA nephropathy is one of the most common forms of kidney disease, >>accounting for up to 10% of cases of end-stage renal disease. Many >>forms of therapy for IgA nephropathy have been proposed and evaluated. >>Despite early claims of success, until recently none of these >>treatments had proven beneficial in double-blind, controlled trials. >>Fish oils containing n-3 fatty acids affect eicosanoid and cytokine >>production and therefore may alter renal hemodynamics and >>inflammation. Three small studies of fish oil therapy in IgA >>nephropathy failed to detect beneficial effects. This latest report, >>from the Mayo Clinic and collaborating institutions, describes a >>larger, multi-center placebo-controlled trial of fish oil in patients >>with IgA nephropathy who had persistent proteinuria. In a two-year >>trial, 55 patients received fish oil (12 g/ day) and 51 received an >>olive oil placebo. The primary end point of the trial was an increase >>of 50% or more in serum creatinine concentration, a change indicative >>of loss of renal function. This endpoint was reached in three (6%) of >>the patients in the fish oil group and 14 (33%) of those in the >>placebo group, a highly significant difference. The cumulative >>percentage of patients who died or developed end-stage renal disease >>after four years was 10% in the fish oil group and 40% in the placebo >>group. The authors conclude that in patients with IgA nephropathy, >>treatment with fish oil for two years retards the loss of renal >>function. James V Donadio Jr, Erik J Berkstralh, Kenneth P Offord, >>Dorothy C Spencer, and Keith E Holley for the Mayo Nephrology >>Collaborative Group, New England J Medicine 331(18):1194-1199 (3 Nov >>1994) [Reprints: James V Donadio, Jr, MD, Division of Nephrology, Mayo >>Clinic, 200 First Street, SW, Rochester MN 559051 Charles van Ypersele >>de Strihou, Fish Oil for IgA Nephropathy? [Editorial] N England J >>Medicine 331(18):1227-1229 (3 Nov 1994) [Correspondence: Charles van >>Ypersele de Strihou, MD, University of Louvain Medical School, 1200 >>Brussels, Belgium! >>Accompanying Editorial - "Fish oil for IgA nephropathy? -The New >>England Journal of Medicine Nov 3 '94 p1227(3)" >>Fish oil shows promise to delay progression to kidney failure in >>patients with immunoglobulin A (IgA) nephropathy, but this finding may >>not apply to all patients because of the variability of the disease. >>Kidney failure develops in less than half of patients with the >>disease, and the time span can be as long as 10 to 20 years after >>diagnosis. Results of one study suggest fish oil can slow the >>deterioration of the kidney. IgA nephropathy does not progress at the >>same rate or degree in all patients so these results may not be >>definitive. The follow-up of patients was only three years, a short >>time compared to the duration of the disease. Although fish oil may >>help and certainly does no harm, control of blood pressure with >>angiotensin-converting-enzyme (ACE) inhibitors may protect better >>against progressive kidney failure. >>IgA Glomerulnephritis - Synopsis of a paper by D. Gwyn Williams, >>British Medical Journal >>Jan 8, 1994 >>IgA nephropathy was first reported twenty-five years ago. It is fast >>becoming recognized as the commonest form of glomerulonephritis. >>Recent international meetings of kidney disease specialists have >>acknowledged that nephrologists still do not know how to treat the >>disease. >>Two decades of observation have revealed that spontaneous remission >>may occur but that 15-20% of patients suffer kidney failure within 10 >>years of diagnosis. The risk factors for progression are impaired >>renal function at presentation, heavy proteinuria, hypertension, and >>curiously, absence of the typical symptom - recurrent macroscopic >>hematuria - blood in the urine. IgA nephropathy is shown convincingly >>to be systemic by its recurrence in patients who receive kidney >>transplants and, more remarkably, by the disappearance of IgA deposits >>when a kidney from someone with IgA is transplanted into someone with >>renal failure from another cause. >>When IgA nephropathy was first described, the fact that IgA is >>produced by mucosal cells - had been only recently discovered. The >>deposition of IgA in glomeruli was explained as an immune complex >>disease in which an antigen or antigens came into contact with the >>mucosa and induced an IgA antibody response. This led to >>antigen-antibody complexes circulating and being deposited in the >>kidneys. In some patients the serum IgA has an increased antibody >>activity against food antigens such as gliadin and casein and the >>amount of circulating complexes is increased. There is spotty evidence >>that the mucosal surfaces are incompetent at one of their normal tasks >>- preventing antigen or antigen-antibody complexes from entering the >>circulation. As with any disease of unknown cause that is mediated by >>the immune system, autoimmunity was invoked. The finding that in some >>patients serum IgA is bound to fibronectin or collagen, both normal >>constituents of glomeruli; though this binding was later shown not to >>be an antigen-antibody combination. >>Bone marrow, which produces immunoglobulins, accounts for one third of >>normal production of IgA. Patients with IgA nephropathy produce excess >>amounts of IgA in their bone marrow[2] – an observation that supports >>the systemic nature of IgA nephropathy. B cells in the tonsils have >>been shown to produce excess IgA.[3] The abnormal production seems, >>then, to affect both the mucosal and non-mucosal compartments. The IgA >>in the serum of patients differs qualitatively from that in normal >>subjects, and is reflected in the nature of IgA deposits in the >>kidneys[4]: IgA in these patients has an increased negative charge and >>an increased ratio of [lambda] to [kappa] light chains, and its >>carbohydrate content is abnormal – a portion is galactose deficient. >>IgA eluted from glomeruli and in the circulating complexes is >>polymeric and of the IgA, subclass; the other subclass, IgA[sub. 2], >>mainly produced in mucosa, is not found. Understanding of these facts >>is incomplete. >>Failure to detect IgA[sub. 2] suggests that the main source of >>glomerular IgA is not mucosal. It may be the physical changes in the >>IgA molecule that increases deposition in and reduced clearance from >>the glomeruli, which have receptors that bind to the heavy chain of >>IgA. The differences in the charge and class of IgA in IgA nephropathy >>might be explained by a particular antigen or antigens driving the >>selection of B cells that produce IgA, or some regulation failure >>leading to production excess IgA, with these characteristics. >>How might this regulation failure occur? T cell activity, influences >>the production of IgA by B cells in various ways. Several interleukins >>(produced by T cells) regulate production of immunoglobulin, and among >>these is IL6, which increases production of IgA. Increased >>concentrations of IL6 have been found in the blood and urine of >>patients with IgA nephropathy. A second possibility is that the >>production anomaly of IgA is genetic. Research has offered conflicting >>results. A genetic flaw fits the familial incidence of IgA nephropathy >>and the abnormalities of production of IgA in healthy relatives of >>patients. >>Several models of glomerular deposition of IgA have been developed in >>lab animals but most do not develop glomerulonephritis. These studies >>are not yet providing help in answering fundamental questions. >>The question most important is whether treatment or cure of IgA >>nephropathy is possible. At the moment neither prevention nor cure is >>possible, though rigorous treatment of hypertension will slow >>progression of the disease, as it will for any chronic renal disease. >>The idea of treating any "immune" disease with immuno-suppressive >>drugs has provided no real useful treatment: the two exceptions are >>the uncommon acute crescentic variety of IgA nephropathy and some >>recent evidence that alternate day treatment with prednisone may slow >>progression.[5] Phenytoin has the curious property of diminishing >>serum concentrations of IgA. A trial of this drug in 1980 showed no >>benefit,[6] but recent long term follow up of the cohorts has >>suggested that progression of IgA nephropathy may have been slowed. >>Since the tonsils are a significant
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Response:
On Sat, 10 Apr 2004 03:42:48 GMT, "Walter Crosby" <wcrosby…@earthlink.net> wrote: >The Canadian IGAN site (http://www.igan.ca) is not a scam. Neither is >http://health.groups.yahoo.com/group/iga-nephropathy/, which is the primary >support group. You may be disgruntled because unproven treatments are not >encouraged on those sites, only clinically tested and proven treatments.
You are suppressing information. You are manipulating peoples views by your own agenda. You are censoring posts and you are raking it in financially, crime and motive there. What other support group in the world censors information for it’s users? >The Yahoo group was the only active site when I needed it in December >2000 — there was nothing else at all to provide any assistance for this >disease.
Liar. >The moderator or the Yahoo group created the igan.ca site in order to act as >a backup in case Yahoo started to release names and email addresses, or if >Yahoo decided to go to a paid site. Members of the Yahoo group donate their >own money to continue the operation of that site in order that the creator >of the group not have to shell out the money out of his already limited >disability income. >I’m offended at the comments that are being made in this group. If you have >a problem — why don’t you take it to the thousands of people that are >receiving assistance and information through the secure and anonymous Yahoo >Group, rather than this public newsgroup, which requires that people hide >behind anonymous postings — how reliable is that?
Im sure they will be learning well enough once word gets around. Why should you be concerned at the truth harming you? As for hiding, we have no way of knowing who you really are, obviously not "walt" lol and you’re the one censoring information on a very serious disease. >"David Crane" <d…@yahoo.co.uk> wrote in message >news:saq470t97vulrdnsh8io0ah1mret7blbcm@4ax.com… >> Any help groups out there or lists worth subscribing to? >> PS: not the french canadian site which seems to be a scam. >> David.
""""""""""""""""""""""""""""""""""""""""""""""""""" It would seem we need to BEWARE who we seek advice from. WWW.IGAN.CA is an heavily censored site, this includes the listserv iga-nephropathy @yahoogroups.com. It is also run for financial reward, the profits of which solely support it’s founder and host Pierre. The original IgAN help group was www.igan.org hosted by Russ George. It is now proposed that the very valuable information on that website is published once again, so that IgAN sufferers have a resource they can trust once again. please note we have no connection with igan.org this is a public information service. Much of the information here is direct from www.igan.org website you will NOT find this valuable information at igan.ca, because it has been censored by a misfit who left the real IgAN support group in a sulk and decided to deceive us with his own website full of misinformation. Check it out yourselves and compare notes. Most of the email addresses and links appear out of date One day we hope Igan.Org will rise Phoenix like from the ashes and Russ George again in the forefront of IgAN support.
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Any help groups out there or lists worth subscribing to? PS: not the french canadian site which seems to be a scam. David.
Response:
On Tue, 06 Apr 2004 09:29:33 +0100, David Crane <d…@yahoo.co.uk> wrote: >Any help groups out there or lists worth subscribing to? >PS: not the french canadian site which seems to be a scam. >David.
You of course refer to www.igan.ca, run by exile Pierre and *claiming* to be *IgA Nephropathy Support Group*, which is in reality a ripoff of the original IGAN *www.igan.org* which used to be frequented by specialists and patients alike. Seems to have bit the dust, which is sad. People visit, or rather are lured to www.igan.ca with the deliberate intent of deceiving them into thinking it is the old group, without realising this group is heavily censored and a money making scam in reality, the advice given is poor, plagiarised or just plain incorrect. This deprives victims of a very serious degenerative disease of a valuable resource. It’s very likely this website was the cause for the closure of the original. The founder, Pierre often ridiculed serious research and claimed the best thing for IGAN was to do nothing! his pet hate was the *fish oil* treatment. Does anyone know if the original resource is still available at igan.org? it would be wise if it were maintained and shown, even if just to serve as an impartial resource to counter the 500+ gullible victims igan.ca *claims*. It’s sad to see what one rogue element can do, when greed and avarice take over. Visit the site www.igan.ca and you’ll note he doesnt even mention the old resource contents, despite it being the foundation stone for IGAN research on the internet and available toe @everyone@ without subscription.
Response:
On Tue, 6 Apr 2004 08:53:26 +0000 (UTC), libr…@cotse.net (User – Hide quoted text — Show quoted text -Library) wrote: >On Tue, 06 Apr 2004 09:29:33 +0100, David Crane <d…@yahoo.co.uk> >wrote: >>Any help groups out there or lists worth subscribing to? >>PS: not the french canadian site which seems to be a scam. >>David. >You of course refer to www.igan.ca, run by exile Pierre and *claiming* >to be *IgA Nephropathy Support Group*, which is in reality a ripoff of >the original IGAN *www.igan.org* which used to be frequented by >specialists and patients alike. Seems to have bit the dust, which is >sad. People visit, or rather are lured to www.igan.ca with the >deliberate intent of deceiving them into thinking it is the old group, >without realising this group is heavily censored and a money making >scam in reality, the advice given is poor, plagiarised or just plain >incorrect. This deprives victims of a very serious degenerative >disease of a valuable resource. It’s very likely this website was the >cause for the closure of the original. >The founder, Pierre often ridiculed serious research and claimed the >best thing for IGAN was to do nothing! his pet hate was the *fish oil* >treatment. >Does anyone know if the original resource is still available at >igan.org? it would be wise if it were maintained and shown, even if >just to serve as an impartial resource to counter the 500+ gullible >victims igan.ca *claims*. >It’s sad to see what one rogue element can do, when greed and avarice >take over. >Visit the site www.igan.ca and you’ll note he doesnt even mention the >old resource contents, despite it being the foundation stone for IGAN >research on the internet and available toe @everyone@ without >subscription.
Be very careful about your accusations, Pierre is not averse to legal action to silence what is now a very lucrative service. When he first went off in a sulk and tried to take the ball with him, he did make it fairly clear he was not Russ’s group www.igan.org Heres an advert of his. "" Pierre L posted the following article in the Patients Support Forum http://brumley.com/renal/patientboard.html Dated : January 26, 2001 at 12:38:25 Subject: Change in iga-nephropathy eGroup http://brumley.com/renal/patientmessages/10021.html On the internet, the more things change, the "less" they stay the same. eGroups have now become Yahoo!Groups. So, if you have iga nephropathy, the new group site is: http://groups.yahoo.com/group/iga-nephropathy or you can subscribe by emailing: iga-nephropathy-subscr…@yahoogroups.com This is not the same as the IgAN Foundation’s listserv. I am not associated in any way with that organisation, and I don’t promote unproven alternative therapies, tonsillectomies or anything else. Just straight facts and help about IgAN."" Note the last paragraph in particular. Then I’d advise you to visit his website and list, you’ll find all information in that line is suppressed & censored. In fact you’d be hard pushed to find any serious research or questions on his site. Something seriously wrong about a website that steers you clear of impartiatlity, perhaps he thinks we are unable use our own minds for decisons? I fear something more sinister :[[ Lee
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On Tue, 6 Apr 2004 05:19:22 -0400 (EDT), User Library – Hide quoted text — Show quoted text -<libr…@cotse.net> wrote: >On Tue, 6 Apr 2004 08:53:26 +0000 (UTC), libr…@cotse.net (User >Library) wrote: >>On Tue, 06 Apr 2004 09:29:33 +0100, David Crane <d…@yahoo.co.uk> >>wrote: >>>Any help groups out there or lists worth subscribing to? >>>PS: not the french canadian site which seems to be a scam. >>>David. >>You of course refer to www.igan.ca, run by exile Pierre and >*claiming* >>to be *IgA Nephropathy Support Group*, which is in reality a ripoff >of >>the original IGAN *www.igan.org* which used to be frequented by >>specialists and patients alike. Seems to have bit the dust, which is >>sad. People visit, or rather are lured to www.igan.ca with the >>deliberate intent of deceiving them into thinking it is the old >group, >>without realising this group is heavily censored and a money making >>scam in reality, the advice given is poor, plagiarised or just plain >>incorrect. This deprives victims of a very serious degenerative >>disease of a valuable resource. It’s very likely this website was the >>cause for the closure of the original. >>The founder, Pierre often ridiculed serious research and claimed the >>best thing for IGAN was to do nothing! his pet hate was the *fish >oil* >>treatment. >>Does anyone know if the original resource is still available at >>igan.org? it would be wise if it were maintained and shown, even if >>just to serve as an impartial resource to counter the 500+ gullible >>victims igan.ca *claims*. >>It’s sad to see what one rogue element can do, when greed and avarice >>take over. >>Visit the site www.igan.ca and you’ll note he doesnt even mention the >>old resource contents, despite it being the foundation stone for IGAN >>research on the internet and available toe @everyone@ without >>subscription. >Be very careful about your accusations, Pierre is not averse to legal >action to silence what is now a very lucrative service. >When he first went off in a sulk and tried to take the ball with him, >he did make it fairly clear he was not Russ’s group www.igan.org >Heres an advert of his. >"" Pierre L posted the following article in the Patients Support Forum >http://brumley.com/renal/patientboard.html >Dated : January 26, 2001 at 12:38:25 >Subject: Change in iga-nephropathy eGroup >http://brumley.com/renal/patientmessages/10021.html >On the internet, the more things change, the "less" they stay the same. >eGroups have now become Yahoo!Groups. So, if you have iga nephropathy, >the new group site is: >http://groups.yahoo.com/group/iga-nephropathy >or you can subscribe by emailing: >iga-nephropathy-subscr…@yahoogroups.com >This is not the same as the IgAN Foundation’s listserv. I am not >associated in any way with that organisation, and I don’t promote >unproven alternative therapies, tonsillectomies or anything else. Just >straight facts and help about IgAN."" >Note the last paragraph in particular. Then I’d advise you to visit >his website and list, you’ll find all information in that line is >suppressed & censored. In fact you’d be hard pushed to find any >serious research or questions on his site. >Something seriously wrong about a website that steers you clear of >impartiatlity, perhaps he thinks we are unable use our own minds for >decisons? I fear something more sinister :[[ >Lee
It sure is. Do a search on google, you’ll see the snide remarks aimed at igan.org. Censorship certainly is alive and well at igan.ca. -quote- -Please note that from time to time, it may be necessary for new members or messages to be approved by the moderators. If this is the case when you subscribe, it shouldn’t take long for a moderator to approve. Controlled access is sometimes needed for everyone’s benefit and enjoyment of this group._ Lol, controlled access indeed. The website http://www.igan.ca/ is almost a copy of www.igan.org and certainly designed to give the impression it is the same respected people. IgA Nephropathy Support Group Where is Russ George these days, perhaps he should prosecute?. It’s all very well a misfit starting up their own group, but at the expense of established sites?, I don’t think so somehow.
Response:
The Canadian IGAN site (http://www.igan.ca) is not a scam. Neither is http://health.groups.yahoo.com/group/iga-nephropathy/, which is the primary support group. You may be disgruntled because unproven treatments are not encouraged on those sites, only clinically tested and proven treatments. The Yahoo group was the only active site when I needed it in December 2000 — there was nothing else at all to provide any assistance for this disease. The moderator or the Yahoo group created the igan.ca site in order to act as a backup in case Yahoo started to release names and email addresses, or if Yahoo decided to go to a paid site. Members of the Yahoo group donate their own money to continue the operation of that site in order that the creator of the group not have to shell out the money out of his already limited disability income. I’m offended at the comments that are being made in this group. If you have a problem — why don’t you take it to the thousands of people that are receiving assistance and information through the secure and anonymous Yahoo Group, rather than this public newsgroup, which requires that people hide behind anonymous postings — how reliable is that? "David Crane" <d…@yahoo.co.uk> wrote in message
news:saq470t97vulrdnsh8io0ah1mret7blbcm@4ax.com… – Hide quoted text — Show quoted text -> Any help groups out there or lists worth subscribing to? > PS: not the french canadian site which seems to be a scam. > David.
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Now that this subject has come up, and that I have personally been the target of statements about my integrity on this newsgroup by an anonymous poster, I should point out that during its last years of existence, the operators of the now defunct www.igan.org seemed to lose interest in the whole subject. The site was rarely updated or maintained. It became stale and outdated, and during the last year or two it was online, it depended on asking if any user was willing to renew it by charging it on their personal credit card (not very different than asking for donations). Moreover, the email group it was associated with, for lack of direction, became a haven for hawkers of Chinese herbal medicines and other alternative medicines. I indeed was a member of that group at the time. I thought there was a need for a site that provided more realistic assistance to people who have to deal with this very real kidney disease and with advancing chronic renal insufficiency on a daily basis, and who have to do so in the real world of flank pain, fatigue, high blood pressure, depression, anemia, etc. So, to use a sports analogy, I picked up the ball and ran with it, since nobody else seemed interested in doing so. First, I setup a new email group, and later, a companion website which serves as the FAQ for that group. It seems to have been successful, so far (1000 plus members). And, I carried on with it even after I had to start hemodialysis and wasn’t feeling very well for many long months. We do not have censorship. What we have is a user agreement, and the occasional member who deliberately disregards it may be moderated. It’s not a usenet newsgroup, nor is it a public group. It’s a moderated group which nevertheless accepts anyone who wants to join and who abides by the terms of reference. You can rest assured that I make no money from operating the website. It is totally non-commercial, and the small number of donations I get don’t even cover my costs, or just barely when they do. Each year, I am very grateful to the very small number of patrons who help me out by covering the shortfall at year’s end. My terrific team of moderators and I, and our many members have helped countless hundreds of people who have come to us completely distraught by their diagnosis of kidney disease, and desperate for factual information that their doctors don’t have time to provide. For those who are so-inclined, there is another website which approaches IgAN from a homeopathic and naturopathic perspective. It’s the internet. You can go wherever you want. If that’s your thing, go for it. Good luck. When IgA nephropathy is still a mild condition, which can literally last for a decade or more, it’s very easy for people to delude themselves into thinking these things work, when it’s actually just the usual behaviour of this particular disease. Those of you who know me from my postings on this newsgroup – alt.support.kidney-failure – for many years will know that I am a person of integrity, even if you don’t always agree with me, and that my only purpose in running www.igan.ca and its associated email group and web forums is to help those who need help, and to provide a community where IgA nephropathy patients can meet and discuss things in a welcoming, friendly environment. I gladly invite anyone to visit my website. I’m sure you will find it’s as comprehensive and truthful as it gets. I was initially very upset by the postings I saw today about me on this newsgroup, but I guess success does tend to breed some enemies. Pierre "Walter Crosby" <wcrosby…@earthlink.net> wrote in message
news:Y2Kdc.2831$zj3.502@newsread3.news.atl.earthlink.net… – Hide quoted text — Show quoted text -> The Canadian IGAN site (http://www.igan.ca) is not a scam. Neither is > http://health.groups.yahoo.com/group/iga-nephropathy/, which is the primary > support group. You may be disgruntled because unproven treatments are not > encouraged on those sites, only clinically tested and proven treatments. > The Yahoo group was the only active site when I needed it in December > 2000 — there was nothing else at all to provide any assistance for this > disease. > The moderator or the Yahoo group created the igan.ca site in order to act as > a backup in case Yahoo started to release names and email addresses, or if > Yahoo decided to go to a paid site. Members of the Yahoo group donate their > own money to continue the operation of that site in order that the creator > of the group not have to shell out the money out of his already limited > disability income. > I’m offended at the comments that are being made in this group. If you have > a problem — why don’t you take it to the thousands of people that are > receiving assistance and information through the secure and anonymous Yahoo > Group, rather than this public newsgroup, which requires that people hide > behind anonymous postings — how reliable is that? > "David Crane" <d…@yahoo.co.uk> wrote in message > news:saq470t97vulrdnsh8io0ah1mret7blbcm@4ax.com… > > Any help groups out there or lists worth subscribing to? > > PS: not the french canadian site which seems to be a scam. > > David.
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> ~Sal 