No more links to pictures
AnonymousAugust 14, 2006 at 3:48 pm
I must say, I am pretty upset about having to pull the links to pictures I included in my posts. Every one of is a personal photo appropriate to the topic of the respective non-GBS/CIDP thread. Only one of them was a clipart of an Irish rolling on the floor laughing. A harmless response to a funny story Ali posted.
It does look like the admin is punishing everybody for what he calls someone’s inappropriate pictures. His announcement in red on the first forum page reads:
[COLOR=”Red”]Because of this abuse, we must resort to pulling all links. This site is for information anddiscussion about GBS and CIDP ONLY[/COLOR]
This doesn’t hold water. The only links to pictures I’ve seen are on [B][U]non-GBS/CIDP [/U][/B]threads. Why doesn’t he totally block threads like “The Tavern”, “Geography Game” and “Daily Delights” or even the entire topic “On the Lighter Side” since they have nothing to do with GBS/CIDP. Or maybe – what an “outlandish thought!!!” – deal with the “abusers” directly instead of banning everybody.
I would expect forum members only interested in serious GBS/CIDP discussions and information exchange to stick to threads appropriate to it – which is fine. The threads I mentioned above are for fun only.
AnonymousAugust 14, 2006 at 4:22 pm
Norb, I am going to miss your beautiful pictures. I always looked forward to them. I can tell you that the problem the administrators had to deal with had nothing to do with the fun sites. Recently, 7 different postings have appeared on a serious gbs/cipd thread by sub-humans who have nothing better to do than ruin it for the rest of us. Besides being offensive, inappropriate and down right crude, one of the last postings was of links to the most obscene, explicit porn sites that made my skin crawl. There are people of all ages on this site. I can’t imagine someone logging on for the first time, going under “general questions” and finding this! I am extremely sensitive about perverts and predators for good reason and it infuriates me that they were able to come onto my “lifeline” for support ! And because of them we have to give up the beauty of sharing stories through pictures. What a shame. Vicki
AnonymousAugust 14, 2006 at 6:04 pm
[QUOTE=vls]Besides being offensive, inappropriate and down right crude, one of the last postings was of links to the most obscene, explicit porn sites that made my skin crawl. There are people of all ages on this site. [/QUOTE]
Thanks,Vicky, for your feedback. It is just a shame that the actions of a very small number of misguided people have to affect others. It is kind of what happened in a much larger scale in London last week. I just wished the administrator would have been a bit more open about it in his personal message to me requesting me to remove all links to my pictures. I did it right away but it took me quite a while to find all or most of them. He should not have put this on me to do.
AnonymousAugust 14, 2006 at 6:16 pm
Admin can delete my post and stuff. I don’t want to waste my energy doing it. go thru 350+posts. *cks his meds* unregister me even… my last link is to this site.
Now thats funny, I don’t care who you are…
edited to say…
oppps When Norb said he got a pm to delete his, I figured I would get one to delete mine, cause I’m prolly next in line for the number of links. *flexes*
But Lee, they were able to delete them for me.. I’m sure they are close to getting those avatars…
AnonymousAugust 14, 2006 at 7:16 pm
Isn’t this just a little bit silly? I mean, we all have been layed helpless by a cruel disease, suffered the indignities of modern medical practice, and have worked our way up from complete helplessness. And after all of that, are we so sensitive that all links must be banned because of a very few offensive posts? Isn’t that a bit like curing a headache by using a bazooka?
I have an idea, why don’t we punish those individuals who post offensive threads, and not everyone else? I know it is a rather novel idea, especially for those of you from North Korea, Iran, and Cuba. How do you punish those who post inappropriately? That is easy enough, leave their posts up and let them face the ridicule and public scorn they all deserve. Trust me, I have been more than willing to help out in that department.
How about doing what you can do to avoid punishing everyone on this site? How about getting the avatars up and running? It’s only taken several months. I think one could have a stoned monkey randomly pound on a keyboard with the jawbone of an ass and eventually hit that magical keyboard combination that would turn on the avatars in roughly half the time it has taken to get the avatars on this site up and running.
How about allowing members to post graphics directly on this site so that we don’t need to use hyperlinks? I am pretty sure this software allows such a thing to happen. I have been waiting for months to post the graphics needed to explain fatigue with GBS. How many more months will it take?
Look, if you don’t want us to post here, let us know. We will find somewhere else to go. But to punish the active members of the GBS and CIDP community for the transgressions of a few misguided outsiders seems unjust and foolish.
Have a nice day,
AnonymousAugust 14, 2006 at 7:57 pm
who is the admin nazzi anyway?
i’ve been around the www since before it was the www, when it was merely a bunch of unix computers owned by schools and government (federal, state, and local that are mostly referred to via .edu and .gov nowadays) which passed text-based emails via uucp through known nodes nationally – and then later globally – overnight via dial up connections of less than 1200 baud.
i’ve been dealing with unix since 1980 (oops! didn’t mean to show my age) and i am a huge believer in the openness of this technology from the beginning. censorship of most any kind is not necessary and not desired. there WERE many links on this forum to fantastic information – which i can no longer access since they have been deleted. didn’t see a need to have to bookmark every good link given here since it was merely a simple topic search to find the link and access it again.
this is for both the admin and those who have been complaining about advertisments and undesireable content. there will ALWAYS be the bad with the good and you must realize this people! ignore the bad, it usually goes away, this is 20+ years of administration experience talking. most of the time, the bad is trying to elicit a response … and it looks like the bad has accomplished it’s goal here! (which is usually to have some kind of impact, be it bad or good). grow up people! stop being so thin skinned! the price of free will is having to deal with the bad on a regular basis! deal with it! ignore it! it WILL go away.
oh well, probably just ticked off a bunch of folks, but really – act like children, get treated as such … and look! it happened. tisk tisk tisk admin. shame on you. shame on all of us now … this could well be my last post here, we will see won’t we?
does this mean i should delete the link to gbs-cidp.org from my website? after all, don’t want folks exposed to bad content and censorship …
oh yea, almost forgot. administration of a website IS a fulltime job, to think otherwise is naive at best. however, most servers have a way to block access to certain ip addresses. also, there are great tools like spam assassin and others that allow admins to filter content, emails, and posts.
AnonymousAugust 14, 2006 at 8:30 pm
Well said, Eric. Your point about losing the links to valuable information is well taken. This is counterproductive to the purpose of having a forum like this.
Like you this whole thing reminds me of the Nazi Germany of 1933-1945. I thought I got away from that when I came over to the US. Believe it or not, I was there the entire period.
The following is sarcasm, my way of relief. Don’t take me seriously, please. Eric, don’t link your excellent CIDP website which is at [COLOR=”RoyalBlue”]www.ericvance.com[/COLOR] to mine at [COLOR=”RoyalBlue”]www.bluemarble.de/Norbert/CIDP[/COLOR] . It has a link to GBSFI and to Ken’s site in the UK about PDN (Paraproteinemic Demyelinating Neuropathy) which is at [COLOR=”RoyalBlue”]www.pdn-info.co.uk/[/COLOR]. Who wants to know all that anyhow? We don’ t want to make the exchange of valuable information too easy, do we? That’s not what the internet is for. 😮
Here is another link to a great site that needs to be eliminated, the UK GBS/CIDP forum at [COLOR=”Blue”]www.gbs.org.uk/cgi-bin/ikonboard3/ikonboard.cgi[/COLOR]
or this German one I am on: [COLOR=”RoyalBlue”]f21.parsimony.net/forum38670/[/COLOR]
Maybe we should go back to 80 column punch cards which is were I started in ’74 (who cares about age, Eric). With punch cards at least there are no links, no spam. BTW, I still have a stack as souvenir.
P.S. You can’t click on these links anymore. But here is what you can do: Just highlight them, copy and paste them into a new internet explorer window. That works fine.
AnonymousAugust 14, 2006 at 9:18 pm
Eric, The bad have accomplished more than one thing. They now have members with an illness in common telling each other off. Does it really make you feel better to tell me I have thin skin when I’ve been abused and don’t want to view a thread and find out it lists the worst possible porn sites in the world? Should I have to worry on a health site about being traumatized again? I reported something that should have been reported. I asked that it be deleted and that’s all. Administration and administration only made the decision to cancel the links. I came on this site for support and education, not to “deal with it” again.
AnonymousAugust 14, 2006 at 10:26 pm
[QUOTE=Lee Spurgeon]How about allowing members to post graphics directly on this site so that we don’t need to use hyperlinks? I am pretty sure this software allows such a thing to happen. I have been waiting for months to post the graphics needed to explain fatigue with GBS. How many more months will it take?[/QUOTE]
Lee, I, too, wished he or she – instead of a knee jerk reaction – (which BTW most of us are supposed to be no longer capable of :D) – would work on allowing us to upload pix directly. I as many others have been uploading fun pictures on the UK forum forever. Recently, Gary, one of the members, actually e-mailed me from England a bunch of photos he’s been trying to upload without success for a long time. They were beautiful shots of flowers in his garden. I fixed the files and e-mailed them back to him. He was elated and immediately posted the first one on “Daily Delights”.
At least I can post pictures there without censureship. GBS and CIDP is serious business. Where would we be without a “On the Lighter Side” – at least me and many others – to help us cope with this.
Of course, there is another side. We as adults usually can chose to ignore uncalled-for posts. (And I am not talking about previous abuse, Vicki.) Children don’t necessarily have that kind of maturity. I have 14 grandchildren. They might come to this forum to find out what’s going on with their grandpa. Finding porn-sites is the last thing I would want to happen to them. Reporting these kind of posts is our only weapon against this. Thank you, Vicki.
AnonymousAugust 14, 2006 at 11:10 pm
[COLOR=”RoyalBlue”]Thank you Norb for your kind remarks. I think you know by now I disagree with what the administrators did with the picture links.I also have young grandkids who know I get on this site. It just makes me go balistic when I see low life scumbags polluting our world. By the way, my favorite forum is “on the lighter side”. Take care, Vicki[/COLOR]
AnonymousAugust 15, 2006 at 12:34 pm
The administrators need to fix this site so there is a multi step sign in procedure!!!!!! try doing your jobs, that you are taking all the hard fought for money, to do!!!!!!!!!! we, the gbs/cidp patients, have a right to type or link our worlds together-that is what SUPPORT stands for!!!!! I don’t like having to fight for something that is soooo petty, but this site has been a lifeline to soooo many of those who have/had gbs/cidp. How dare the administration blame the true members of this site for them not doing their job correctly!!!!! Its strange how another member can start his own site for support and allow everything on it and not have any problems with hackers or inappropriate links, and still have a GREAT support site for gbs/cidp patients! aboutgbs dot com is run by a Wonderful Administrator unlike this site, and he doesn’t mention money once!!!!
AnonymousAugust 15, 2006 at 12:56 pm
After reading so many of your posts venting about our new policy of disallowing links, we feel a reply is warranted. First, we are NOT deleting pictures – except for those that could be objectionable to others. In recent news when airline officials found that an explosive could have been made with a liquid or gel, [B]NO [/B][B]ONE[/B] was allowed to bring these items aboard. Same point!
However, there is a greater issue here. Since our site was hacked – through a link from the Discussion Forum, I might add – the Foundation has spent close to $15,000 to get the site up and running securely. Where do you think this money comes from? A large part of it comes from donations from people such as you, often in increments of only $10 and $25. Twenty five years ago this organization began around a kitchen table. The mission then, as it remains today, is to support and educate patients, families and healthcare professionals. We also fund promising research and advocate in Washington DC for your rights as patients. This is where your money should go! What do you think our supporters would think if they saw an offensive link (or post) on our Discussion Forum. Please think about these points and realize that we are making this site available to you as a service and we would like to keep offering it to you in the future. Thank you for your understanding.
AnonymousAugust 15, 2006 at 1:40 pm
Dear admin, you do have my full understanding. But you are saying you are not removing pictures. Would you mind telling me then why you sent me a private message asking me for compliance in removing my pictures, most of which were harmless private photos posted appropriately mostly on “Daily Delights” and sometimes on “Geography Game”? The only difference between mine and uploaded ones was that my photos, like those of others, were linked to a folder on my personal website. This way they appeared within my post, a much more user friendly way. None of my photo links were to an actual webpage. Doing it my way a spammer would not get the results he or she are trying to achieve, i.e. link to a porn site or commercial site selling something.
Are you sure you meant for me to remove my pictures – which BTW I did immediately? I received a number of private messages from other members telling me how much they enjoyed my photos and how much they regretted not seeing them anymore.
AnonymousAugust 15, 2006 at 2:36 pm
[QUOTE=gbsfi] Since our site was hacked – through a link from the Discussion Forum, I might add – the Foundation has spent close to[B] $15,000 [/B]to get the site up and running [B]securely[/B][/QUOTE]
I’m rolling over in my grave! They spent 15k for all that, and then the forum links were hacked by gbsfi. They should have paid some money and got a real admin instead of another hacker.
AnonymousAugust 15, 2006 at 2:50 pm
Proactive notification would have take a moment–a simple post outlining action and asking for our reaction. I feel like a kid sent to the principal’s office because someone in my class misbehaved. Some of the senior members are disgusted and leaving the website. Isn’t that a clue?
I hate porn. We have relied on members of the forums to police inappropriate posts and several members (Jerimy and Lee in particular) have done so extremely well. Or someone here or at your office could vet each #1 post. Don’t you trust our judgment? Perhaps it would be more appropriate if you policed the advice we give each other or newbees.
Marguerite GBS 12/98, dob 6/41
AnonymousAugust 15, 2006 at 8:50 pm
[COLOR=”Blue”]You are absolutely right, Marge. When I was looking for help in June, everyone was here for me. We have new people coming onto this site everyday looking for that same help. If there is anything I have to offer, I want to be here for them. Vicki[/COLOR]
AnonymousAugust 15, 2006 at 9:28 pm
The admin tells me that he only meant the link in my signature to my personal website containing my CIDP story and not to any pictures. Did I get it right this time? 😀 Enough said already – at least as I am concerned.
Here is me back in business, private photos to follow soon under “On the lighter side”.
AnonymousAugust 15, 2006 at 11:29 pm
[QUOTE=marguerite]As has been the case so many times, I pulled out the knives to find out Brandy was right in urging me to calm down.
I apologize for losing my temper. May I blame it on GBS?
“knives”??? Big ones??? What happened to the book you told me you were going to go back to because it was less stressful? Anyhow, if you did in fact “pull the knives” (which I totally missed) you can only blame it on the steroids and being a post-menopausal Irish-American, not on GBS 😀 . And besides, I am used to being the target of “small kitchen knives” sometimes. Carol fits the same category as you, post-menopausal etc. I guess I am really lucky she is not on steroids – hence only [U]small[/U] knives.
Have fun at the performance tomorrow.
AnonymousSeptember 2, 2006 at 2:07 pm
O! My God! It seems that there is lot of happenings in the last month. In August, my PC was not properly working and I was, therefore, a little bit away from this site.
Norb, I remember in your one of the posts on pictures, you had suggested that if anybody is not able to upload the pictures, you were kind enough to help him/them. I did try to post mine and my daughter’s photos but in vain. That time I was looking for that particular thread and/or your email address for the same. Of course, I could not locate it, the reason lies in the above postings.
Any way, I shall seek your help eventually.
September 6, 2006 at 2:54 pm
Pardon me for slipping over from the CIDP forum but I only just now discovered that my directions to favorite websites have been made difficult to use.
I am so annoyed that we cannot send folks directly to web sites with useful and correct information relating to a CIDP or GBS diagnosis. Yes, the newbies can type in the address or even cut and paste – but does anyone remember how very difficult it was to type without error when your hands were weak and twitchy? If the admin doesn’t understand, then what chance is there for us expect consideration from the real world?
Also, because I was already upset, I interpreted the admin’s answer to be blaming us, the forum members in general, for the actions of a person who obviously came here just to do harm. How in the world is that my fault? I work hard to find the right sites to send people to. Why make it hard on the newbies? Surely there is a techie answer to this problem that is less draconian.
I would have hoped that these forums were considered an important contribution for and from the victims of GBSD/CIDP – but obviously we are just a nuisance.
I am in such a snit I am rethinking my United Way contribution.
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