All due respect Stoney, but trust me when I say that there are many that would disagree with you. If you do not want to see it, then so be it. But as I have said, I myself have been here for about a year and rarely post for the very reasons others state. There is no confusion as the receiver of a text of words when someone is bullying, putting down, ridiculing or whatever other term we want to use. Trust me when I say, those feelings come through loud and clear. And as others have eluded to, I am not the only one who sees it, but I will not speak for them. I have just had enough.
FWIW the moderators on this site can do little (although that is changing) Posts are deleted, members suspended or deleted and so forth at another level. With the excecption of some very obvious posts, if you have had posts eliminated or been suspended, its been the decision of two or more people (not me BTW)
Target advertizing. Thats a tough one. This is a very expensive forum to run. I realize most of you understand it has to be paid for somehow. The simple way is with advertized. The thing is while there are some limits to what appears, everyone gets different ads. Those ads come to you based on your google searches, facebook and other social media activity. There are two ways to change what ads you get. Change what you are doing on line, or more effective click on the ads that are of interest or the least bothersome. The ads will change within minutes with the click method. Doesn't just apply here BTW. Also DON'T click on what you don't like. Click on something everyday, Condsider it dues. Unless ads are clicked on ther is no income.
Two other things, this world is different. People who spend a lot of time in it waste few words. If you attempt to put meaning context or similar, you most surley will be wrong. Also squeeky wheels don't get grease, the get eliminated. Multiple messages on the same topic have the same effect. (every word costs the sponsors money) Your concerns are important but remember you are not a consumer on any board. I say that because is one of the few boards I have ever seen where a person threatening to quit has not poofed within minutes (along with every post they have ever made) Its happened here but I can only think of a few. I don't know who makes those decisions. As with most boards its mystery. I know there has been partners meeting regarding this board. Please everyone move on. There has been lots of feedback from lots of members. Things aren't turning out the way some of you might think or hope. As Stoney said don't make an assumption as to how you think someone is saying something.
Laura E D said:
Additional issues of concern - Targeted Advertising on the site!
The advertising block on the webpage used to be filled with fashion related and other sites that I do visit. Recently there has been a switch to what I would call targeted advertising of sites that I do not want to visit or know about, e.g. 'Inflammation Health Serracor- NK $124.99' or for hair loss products and female cancer cover.
Is there a way that I or the moderators can influence or block the type of advertising that is showing up on the site?
I agree with Frances that, you in particular, tend to speak in a condescending tone. I stopped replying when I read this: many things qualify you for disability but this (PsA) is not one of them. You continue to put all cases in the context of your disease and symptoms. They can kick me off, as I have found a much more supportive group at the arthritis assoc. site. What is A SMAME is that you continue to use this board as a way to pump up your ego and treat others with disrespectful and shortsighted comments. I have no desire to be a part of a forum that would continue to allow you to state your opinion as if it is fact. It seems to me that any time someone posts something that you don't fully agree with, you use your position as a moderator to inject your opinion ( as if it were fact, as always), and demean or try to shame the poster. I would think that whoever the actual people are that run this board, they would see that you sir, are not part of a solution. Every time someone disagrees with TNT or finally tell him what he sounds like, they go away after the remarks are removed. Read it quick people, it will be removed very soon.
tntlamb said:
I get you dislike the Cleveland Clinic Frances.
Its a shame you missed the most recent educational event. you would have learned a great deal about the connection of PsA and Vascular disease. It was great conference. The increased rates of occlusive vascular disease with PsA patients is very concerning, and one of the major reasons we have a shorter life expectancy.
This dying thing from occlusive vascular disease can be avoided if you know what to look for and understand it can be treated. I realize you probably didn't know what vascular disease and its connection to PsA is , but to carry the ignorance and rant into several threads and call out the one of the founders group members (tracy) for passing on an educational opportunity is just plain foolish. Put another way - this is her playhouse.
Of course there is a promotional aspect to any group presenting an educational event. The Psoriasis Association and Arthritis association events you promote are no different. Everyone has bills to pay.
I'm sorry that your public ranting resulted in being called out publicly. If you have question about something ask
I am curious to know, What are your credentials please?
tntlamb said:
FWIW the moderators on this site can do little (although that is changing) Posts are deleted, members suspended or deleted and so forth at another level. With the excecption of some very obvious posts, if you have had posts eliminated or been suspended, its been the decision of two or more people (not me BTW)
Target advertizing. Thats a tough one. This is a very expensive forum to run. I realize most of you understand it has to be paid for somehow. The simple way is with advertized. The thing is while there are some limits to what appears, everyone gets different ads. Those ads come to you based on your google searches, facebook and other social media activity. There are two ways to change what ads you get. Change what you are doing on line, or more effective click on the ads that are of interest or the least bothersome. The ads will change within minutes with the click method. Doesn't just apply here BTW. Also DON'T click on what you don't like. Click on something everyday, Condsider it dues. Unless ads are clicked on ther is no income.
Two other things, this world is different. People who spend a lot of time in it waste few words. If you attempt to put meaning context or similar, you most surley will be wrong. Also squeeky wheels don't get grease, the get eliminated. Multiple messages on the same topic have the same effect. (every word costs the sponsors money) Your concerns are important but remember you are not a consumer on any board. I say that because is one of the few boards I have ever seen where a person threatening to quit has not poofed within minutes (along with every post they have ever made) Its happened here but I can only think of a few. I don't know who makes those decisions. As with most boards its mystery. I know there has been partners meeting regarding this board. Please everyone move on. There has been lots of feedback from lots of members. Things aren't turning out the way some of you might think or hope. As Stoney said don't make an assumption as to how you think someone is saying something.
Laura E D said:Additional issues of concern - Targeted Advertising on the site!
The advertising block on the webpage used to be filled with fashion related and other sites that I do visit. Recently there has been a switch to what I would call targeted advertising of sites that I do not want to visit or know about, e.g. 'Inflammation Health Serracor- NK $124.99' or for hair loss products and female cancer cover.
Is there a way that I or the moderators can influence or block the type of advertising that is showing up on the site?
It's rather obvious that more people than some think are tired of being abused on this site!!
I do not see it as abuse. I know some feel abused when given info with no sugar coating. I do not. I find sometimes I get support from others on this site, sometimes I get info, sometimes I get a stern reminder to get on with it. Sometimes that is just what I need. I find it works best for me to take what I can from a discussion and to move on if something does not "speak" to me.
What sort of training process is Ben's Friends having their volunteer moderators go through? If a training does not exist for the moderators, I would strongly encourage the Ben's Friend's team to take a close look at the need for this process because without it, the door is open for the abusive moderator in question to continue his negative attention seeking behaviors.
As a dot.org, Ben's Friend's has supporters and funders that might not be pleased to know so many members of this particular support site have evidence to show they are being bullied and verbally abused by a person provided the privilege of being a moderator who using the position to ego build and put others down. This is wrong and should absolutely be stopped. Does Ben's Friends have a seated Board of Directors? If so, who are they?
I am a degreed Social Worker and Educator and I find this individual's style deplorable. However, the owness to do something about it lies with Ben's Friends.
I guess if a stern reminder to get on with it, is what you need, then he is your man. Sorry, but the misconception by the public is that we can just get on with it, and that is part of the problem. Just my 2 cents. Overall it is the negative tone of the replies that offends people, even if it does not offend you.
How does someone get in touch with the Board of Directors?
She started this thread and is monitoring it....................
Hi everyone, I'm the co-founder of Ben's Friends and this support group. There were a lot of great questions raised here. I'm happy to answer any more that come after this.
First of all, we are all volunteers. I'm a volunteer and all the moderators are volunteers. Go to www.BensFriends.org to see what we are all about. No one gets paid a dime here for doing this. We all do it to help people and help as many people as possible. There are 60,000 monthly users across all 35 networks. Generally speaking our processes work really well, but of course we can always improve and I'm open to all advice. We run on an incredibly tight budget. We have spent $75,000 over 5+ years. Last year we spent $30,000 total. We have a couple freelance staff people that help out when we have money and they have time. The ads don't even get close to covering our budget. We run a fundraiser every year that we depend on. Here is last year's fundraiser: http://www.indiegogo.com/projects/ben-s-friends-2013-building-patient-support-communities (note you can donate on our homepage at www.bensfriends.org if you would like to help out).
We depend on the graciousness of the volunteer moderators who spend their time here to help people. We have over 175 volunteers across the network. This network only has 3 plus me which is probably too few for a site this big. In fact, we could use some more volunteers.
Moderating is incredibly stressful and tough emotionally. Everyone who comes her is in need of help and the Mods facilitate this. It's tough to answer the same questions over and over. And the Moderators love the network so it's understandable to me if they take things personally sometimes. Of course, they should never lose their cool, but we're all humans here. I have been doing this for 6 years and even I have a hard time with it.
We do have a place for Moderators to share best practices and ask each other for advice. We don't have professional training because there is no money for it. I would love to have a program like that because a lot of times I worry that we are doing the Moderators a disservice by throwing them into the fire. They are exceptional people and do the best they can.
A couple other things: the ads we run cover about about 20% of our monthly budget ($500). That is not very much but every dollar helps. They are plain vanilla Google Ads. We don't do anything to customize them except to ban sketchy advertisers (Google works to do this too).
I'd be happy to talk to anyone that has questions. Feel free to message me here.
Scott
Thanks to you and all of the volunteers Scott. This was the first place that I found a support group, and I am grateful to Ben's Friends and your volunteers for that. It is a great site for patients to interact with each other. I do not envy the moderators and I know that they all are doing a thankless (and payless) job. I also know that you can not keep track of all moderators and threads in the network.
With all that being said, I now rarely visit. I found the arthritis foundation simply had a more positive feel.
Scott Orn said:
Hi everyone, I'm the co-founder of Ben's Friends and this support group. There were a lot of great questions raised here. I'm happy to answer any more that come after this.
First of all, we are all volunteers. I'm a volunteer and all the moderators are volunteers. Go to www.BensFriends.org to see what we are all about. No one gets paid a dime here for doing this. We all do it to help people and help as many people as possible. There are 60,000 monthly users across all 35 networks. Generally speaking our processes work really well, but of course we can always improve and I'm open to all advice. We run on an incredibly tight budget. We have spent $75,000 over 5+ years. Last year we spent $30,000 total. We have a couple freelance staff people that help out when we have money and they have time. The ads don't even get close to covering our budget. We run a fundraiser every year that we depend on. Here is last year's fundraiser: http://www.indiegogo.com/projects/ben-s-friends-2013-building-patie... (note you can donate on our homepage at www.bensfriends.org if you would like to help out).
We depend on the graciousness of the volunteer moderators who spend their time here to help people. We have over 175 volunteers across the network. This network only has 3 plus me which is probably too few for a site this big. In fact, we could use some more volunteers.
Moderating is incredibly stressful and tough emotionally. Everyone who comes her is in need of help and the Mods facilitate this. It's tough to answer the same questions over and over. And the Moderators love the network so it's understandable to me if they take things personally sometimes. Of course, they should never lose their cool, but we're all humans here. I have been doing this for 6 years and even I have a hard time with it.
We do have a place for Moderators to share best practices and ask each other for advice. We don't have professional training because there is no money for it. I would love to have a program like that because a lot of times I worry that we are doing the Moderators a disservice by throwing them into the fire. They are exceptional people and do the best they can.
A couple other things: the ads we run cover about about 20% of our monthly budget ($500). That is not very much but every dollar helps. They are plain vanilla Google Ads. We don't do anything to customize them except to ban sketchy advertisers (Google works to do this too).
I'd be happy to talk to anyone that has questions. Feel free to message me here.
Scott
I think that we all need to realize that due to our beliefs, experiences, ideas and backgrounds we all view things through our own ‘lenses’ which affects how we interpret an email or a post. None of these conversations are face to face, we miss the nuances of direct contact. Anybody suffering this disease has other components that creep out due to fatigue, stress, pain, fear, despair, etc… This is the reality of our conditions and web based communication.
I, myself, value this board for what it gives me that I take away. I do not take everything away, some I disagree with, some I do not understand: but I do not have any other options. I live in a very remote place with very little supports. This site is a blessing for me. Everyone learns differently, everyone prefers different approaches. I think we we all need to do, myself included, is take the beneficial stuff with us and if we do not ’ like’ a response or post to acknowledge that to our selves and stay away from it. If you get a response you do not like or want, realize that we may a) need to hear it, B) if we do not feel it valuable that it can be disregarded by ourselves. We are all different, thank God for that! As such, no one will ever like all the posts or responses. It is impossible to have that and still have freedom to speak. Just as we have the freedom to speak we also have the freedom to not comment or to ignore.
The types of responses and posts I am drawn too and find value in my not be the type you find value in. I think the people who moderate have a heavy undertaking. If you have never done it you may not realize that, I for one have no clue as to what is involved I am just grateful the site exists. I believe we need to evaluate our own response to posts and speak only for ourselves. If I do not like something I acknowledge it to myself and then evaluate why? Is it something I do not want to hear? Is it something I think is cracked in the head? And finally, if I post on it what is my intention? It should add value not distract value. It may be the key piece some else needs to hear.
I believe we are here as a community with the best intentions to help one another.
Big thanks on the kind words Garmstro and Kirsten. Really appreciate it!
We're all doing our best!
I am so thankful to all those wonderful moderators that have said a kind word when I needed it and have been tolerant enough to my comments.
This site has given me many things that I could not find elsewhere.
Without exaggeration, it has allowed me to live my life with PsA in a way that I don’t think would have been possible without it.
From Nyms empathy, to Seenies and Louises vulnerability (yes - for people like me, knowing someone else is vulnerable is a huge relief), to Grumpys expertise, and Michael (in vermont)'s apparently eternal balance (guess I’m jealous?), this site makes a positive difference to me every day. Every day. Thank you.
Whilst I wish this thread did not have the feeling of sitting in judgement on certain moderators, unfortunately it does. I agree with Kirsten that the burden of being a moderator is often unseen, with imagined privileges and powers that aren’t actually there.
I work in a very political corporate environment - and my specialty is not sticking my neck out - so I’m about to do something that feels as un-natural as breathing underwater - I’ll be brutally honest about the issue everyone is dancing around, from my personal perspective.
Lamb, you can come across as unreasonably harsh at times. You are incredibly protective of some of the hardest hit members of the group. You are not tolerant of repeated questions on the same subject when the answer is blindly apparent from google, and can definitely come across as condescending in that case, and in others where you feel appropriate respect has not been shown the OP.
But Lamb, you almost single-handedly changed my life by encouraging me not to give up, to accept the challenge ahead, to see this as a life changed, not a life ended. I’ll never be able to fully express my gratitude for that.
Whilst I can understand that different people at different stages of their disease respond better to varying styles, I fundamentally believe that our diversity - of disease and personality - is our strength.
I just ask everyone to respect that diversity.
Some know, people who have been around a while, that I once has a pretty contentious relationship with the moderator in question. I was wrong, and he called me on it. I'll just say that it didn't go well. I was really hurt and incredible angry because he made me see some things that I really didn't want to. I continued to avoid him for months until one pretty awful day.
I woke up in incredible pain. I gobbled all of my meds, as I usually do and waited the requisite hour for them to work. But they didn't work. I took another pill and waited thirty more minutes, and still nothing. I had to get to work; I simply could not miss another day, especially since I had just come back from short-term disability leave. It is hard for me to express just how much I hurt that morning, but I will tell you that it brought me to tears. So I sat on the toilet lid in my bathroom sobbing trying to think of how I was going to make into the shower, and I thought of Lamb's constant chorus of, "You have to keep moving"; that combined with the thought of "What would Lamb say if he knew you were here like this?" got me off of my duff. So, I got in the shower with one foot in front of the other, and that's how I made it through my day: with one foot in front of the other.
It turns out that I experience pain like this two weeks prior to my next infusion, so every 6 weeks. It suuuucks. But, if I just keep moving every day, I am able to make it. I am constantly surprised at what I can do if I just keep moving. It has become my mantra, really. Of course, there are still days where no matter how hard I try, I just am not able., but I do try. If I hadn't had Lamb's support and the support of many on this board, I can't say if I would be doing what I am today. I have PsA, but I am still following my dreams. I have a bright future as long as I get out of bed and get moving.
or
Exactly what Jen said, only less eloquently.
Well said Jen, and Grumpy. Just what I meant to say if my hands didn't hurt so much. But I am moving but slowly!
I agree. I've seen a lot of unpleasant comments.
Livinday2day said:
It's rather obvious that more people than some think are tired of being abused on this site!!
Scott,
I too truly appreciate what this organization is doing for so many. Words would not be able to communicate well enough the good that is being accomplished. But a concern that I personally have is in the way some comments or questions are address by certain moderators. I deal with the public in some of the most delicate times of their lives, and yes they often will ask the same questions or some of the most basic of questions time and time again. But something that is critical is to not become frustrated with that individual and if you do become frustrated to not let that person know you are frustrated. After all, that moment is about them and their situation, not about me as the individual that is there to help them. In my opinion, there have been a number of occasions where I observed a person asking a question, not being treated in the greatest of fashion. That to me is concerning and why I felt the need to share my feelings.
Thank you again for what the organization is doing for so many.
Scott Orn said:
Hi everyone, I'm the co-founder of Ben's Friends and this support group. There were a lot of great questions raised here. I'm happy to answer any more that come after this.
First of all, we are all volunteers. I'm a volunteer and all the moderators are volunteers. Go to www.BensFriends.org to see what we are all about. No one gets paid a dime here for doing this. We all do it to help people and help as many people as possible. There are 60,000 monthly users across all 35 networks. Generally speaking our processes work really well, but of course we can always improve and I'm open to all advice. We run on an incredibly tight budget. We have spent $75,000 over 5+ years. Last year we spent $30,000 total. We have a couple freelance staff people that help out when we have money and they have time. The ads don't even get close to covering our budget. We run a fundraiser every year that we depend on. Here is last year's fundraiser: http://www.indiegogo.com/projects/ben-s-friends-2013-building-patie... (note you can donate on our homepage at www.bensfriends.org if you would like to help out).
We depend on the graciousness of the volunteer moderators who spend their time here to help people. We have over 175 volunteers across the network. This network only has 3 plus me which is probably too few for a site this big. In fact, we could use some more volunteers.
Moderating is incredibly stressful and tough emotionally. Everyone who comes her is in need of help and the Mods facilitate this. It's tough to answer the same questions over and over. And the Moderators love the network so it's understandable to me if they take things personally sometimes. Of course, they should never lose their cool, but we're all humans here. I have been doing this for 6 years and even I have a hard time with it.
We do have a place for Moderators to share best practices and ask each other for advice. We don't have professional training because there is no money for it. I would love to have a program like that because a lot of times I worry that we are doing the Moderators a disservice by throwing them into the fire. They are exceptional people and do the best they can.
A couple other things: the ads we run cover about about 20% of our monthly budget ($500). That is not very much but every dollar helps. They are plain vanilla Google Ads. We don't do anything to customize them except to ban sketchy advertisers (Google works to do this too).
I'd be happy to talk to anyone that has questions. Feel free to message me here.
Scott