I've put a new note in the "welcome" box on the front page that I will be deleting any "commercial" posts or repeated endorsements of "cures." I am not quite sure how to distinguish between an individual sharing their individual success (or not) with a specific product and someone trying to drum up business--however, if the individual repeatedly promoting a product does not have a full profile or picture, I will have to assume it's an attempt to drive traffic or sales.
Let me know if you have any thoughts about this. Here's an example that I am considering deleting: http://vitiligo.ning.com/profile/Maria483 (if this link doesn't work, it means that I have deleted the profile already). I'm also concerned that this is a commercial promotion: http://vitiligo.ning.com/group/vitalgo - as Karim seems to be the owner of this company.
I don't want to take action without the feedback from the community, but if I were making the call today I'd delete both of the above examples.
You need to be a member of Vitiligo Friends to add comments!
I am glad to hear you have taken steps to eliviate this problem.
Three of the ads on this page to my right are (I believe and have heard) are very questionable.
The NVF's offer to support this website sounds very appropriate and good. As people with vitiligo we do not need any false claims of a cure or treatment from people who are just trying to make a profit from our disease.
Thanks, Patty
OK, so I'm deleting Maria and I'm going to delete Karim's group, but not his profile. I'll also send him a note. Thanks for the feedback.
And, if at some point someone decides to "sponsor" this network financially where it seems like an appropriate fit, we can get rid of the Google ads that appear now and that allow the network to run for free through Ning.com. Might be interesting to hear from you all as to where you think that sponsorship could come from that would be acceptable. If National Vitiligo Foundation said they would pay the $25/month to get rid of the ads, would that seem OK?
Another organization: "Vitiligo Support International Inc" http://www.vitiligosupport.org/ already have their own forums and therefore would probably not be interested in sponsoring ours.
Concerning Maria's Profile, I would say it is definitely a SPAM account.
Concerning Karim, he does not seem to be selling but offering free samples, however I don't feel that he needs to create a group to do this. So, yes, his group should also be deleted. In all fairness, maybe he can keep his regular account only as long as he only offers free samples.
Perhaps you should make it a rule about not allowing members to create groups related to products that are not actual medical prescriptions for Vitilgo.
get rid of them! No hesitation. If they want to promote something in an earnest way, let them contact you first. It's not like we're not open to trying something out. It's treating us like idiots that's insulting.
Hi Steve, I totally agree with you and support your suggestion to delete these accounts. I very nearly wrote a sarcastic reply to Maria483 who posted on a discussion I'm tracking as it was completely off-topic and clearly a product endorsement! But I refrained just in case they were genuine! I trust your judgement on deciding which ones to give the boot - keep up the good work. Gem :)
Replies
Three of the ads on this page to my right are (I believe and have heard) are very questionable.
The NVF's offer to support this website sounds very appropriate and good. As people with vitiligo we do not need any false claims of a cure or treatment from people who are just trying to make a profit from our disease.
Thanks, Patty
And, if at some point someone decides to "sponsor" this network financially where it seems like an appropriate fit, we can get rid of the Google ads that appear now and that allow the network to run for free through Ning.com. Might be interesting to hear from you all as to where you think that sponsorship could come from that would be acceptable. If National Vitiligo Foundation said they would pay the $25/month to get rid of the ads, would that seem OK?
Steve
Two other potential sponsoring organizations that I think are acceptable would be:
1. American Vitiligo Research Foundation: http://www.avrf.org/
2. The Vitiligo Society: http://www.vitiligosociety.org.uk/
Another organization: "Vitiligo Support International Inc" http://www.vitiligosupport.org/ already have their own forums and therefore would probably not be interested in sponsoring ours.
Nelly
Concerning Karim, he does not seem to be selling but offering free samples, however I don't feel that he needs to create a group to do this. So, yes, his group should also be deleted. In all fairness, maybe he can keep his regular account only as long as he only offers free samples.
Perhaps you should make it a rule about not allowing members to create groups related to products that are not actual medical prescriptions for Vitilgo.
I agree that, so called, product endorsements should be deleted; particulalry if they exploit the vulnerability of this community.