Hey folks, I have been coming here for several years and it was a true help. THen one by one members would leave and new members with newly dx RA would come.
When RA was sold out to someone else it became all ads and more trolls and anyone to reak havoc and to get many posts. What I noticed the most is that there is no moderation of this site as we all know, plus whenever someone comes in with a snake oil treatment, most members defend their medication and so posts are numerous. Thereafter, there are even more new ads.
Hmmmm what does that tell us? My thinking is that the owner/moderators just want the numbers and the ads. It is difficult for me to even look at this site. The thing of it is when a person is newly dx and looks RA up on the net, AI is one of the first sites they come across which is unfortunate. WE need a site named Arthritis Alliances or something.
There are several other friendly adn informative sites available now, good time to change message boards.
I can understand your feelings of frustration - we all share it. But I still like this site and the people I have met on it. I belong to the other sites and use them as well, but I find this site very active and user friendly, so I intend to continue to be a member.I like the people here very much. I go to the other forums, but I know old friends and I know that there are newbies who are looking for answers.
I'd just rather totally ignore these rude people. We should call them on it once and then not respond any more.
It is why the other forums were created. But this one still has value to me.
I'm not even sure there are mods anymore; I know after the site was hacked a few years ago (or whatever happened when it went down) the old ones set up elsewhere...from what I understand anyway.
The old site was much better, now none of the links work or anything. But it still attracts a lot of new, unaware, members and that's why I stick around. A lot of the smaller forums people have made don't come up in google etc. so this remains their first port of call.
The ads and everything are annoying though
Fiona~You make a really good point. We need to make sure that the links to the alternative sites started by the active members stay available for those newbies seeking help.
I still like it here and visit often. I don't spend as much time here as I do the other boards but I still check in on a regular basis just to make sure I'm not missing anyone.
It's up to us to reach out to those newbies seeking support. I think us old timers get as much out of that as they do. It helps us to help them in my opinion.
PLUS~we're making some really good friends in the process.
On the host site where I set up sushi, there is an option to take on ads and be paid for hits on those advertisers sites that come from sushi. I will never put ads on the board. I just want a place that is free of ads. It doesnt bother me too much, but I realize that some members are sensitive to the commercialization of such a personal message board. This is still a good place to find new people, it is sort of the hub of the arthritis message board world.
A word of advice for any newbies, or members who are only members here.....at least bookmark the other sites in case this one crashes yet again. If you werent here to witness it in June, I can tell you it is a shock. You go online, and all of you buddies have disappeared into cyber-space. It is very upsetting. I didnt have any links and spent hours online trying to find the other sites. They are not easy to find...because they arent commercialized they dont get any priority on the search engines.
Excellent idea Crunchy. You're exactly right.
I don't mind ads on the side of the board where you can click on something you're interested in. It's the trolls that harrash and make light of our situation and try to make you feel like you aren't doing what's best for yourself by using medications and treatments that your doctor has prescribed.
Although these boards are great for enteracting and learning more about the disease.....it's important that you make medical decisions according to your doctors advise. Stopping the use of certain RA meds can lead to long term problems and it's important that you make informed choices with your doctors advise.
I often worry that some folks might be so desperate to find a "cure" that they will be sucked in to certain money making scams without being aware of certain dangers.
Even some herbs have horrible side effects when mixed with prescription medications.
I don't mean to say that all alternative practices are bad....I just mean that you should only do that with your doctors guidence.
I want to thank all of you senior members for staying here and helping us "newbies". I've gotten so much information here that I haven't thought of trying another message board, until today when someone posted a couple of other boards. I'll be going back and forth but honestly, the adds don't bother me a bit. I totally ignore them as well as the posts where a product is being promoted. It's really great that you all stick around for the newcomers.
That's the spirit!! These trolls come and go....and at times it can be slightly entertaining if you don't take anything too personally.
Try some of the other boards too. You'll notice a slightly more personal touch at some of those. It's nice.
I never read the ads and read the 'odd' posting with a dose of humour. This site is tremendous and has helped me a lot the past year. I have learnt more from this site than I have from the doctors.I hope it keeps going for a long time!Many of you are just like me, AI was the first message board I ever read or replied then posted on when dx and it has helped me through the thick and thin of this disease, and many other problems and bumps along the way.
This change with this site over time is not much different with the exception that there are those few that like to crash in and sell their cures and put down modern meds. Most of us here already know there is not such thing as of yet otherwise it would be well advertised and probably on CNN!
I have met some of the most wonderful people here and have told just about everyone I know with this disease and those without it, and I have even told my RD, his staff, all my friends and family. Many times it has gotten me through the terrible times, the pain and the fatigue. Many times i have shared my experiences and course of meds. I think mosty it has been a help in knowing others do experience this disease unfortunately and it lets you know that youa re not alone in the battle. That are feelings of pain and loss are real no matter what anyone says.
Hats off to all those that post with best intentions for the good of those of us with this dreaded disease. We are sincerely here to help. What bothers me most is the advertisements, although I do ignore them, I just hate that such a site has succumbed to such measures. But along with all in this world we now live in, you have to take the good with the bad.
jode