Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Taking Kickas Forward

Agreed.

Ok, so let me take a step back again. Forget about the inclusion/exclusion debate. As a start and first step, what about making the results of the adhoc polls that are started by members on the forums more readily available and accessible?

Unless I am mistaken, at the moment you have to filter through the forums in order to be able to find them. If the poll results could be included as a link off the homepage for example, it would mean people could access a lot of very relevant information much more quickly. By having the polls more visible and prominent, more people would be inclined to respond to them, giving you more information and data to work with, which will give people more reason to want to access them etc. Through this process the polls would in themselves become a much more valuable resource than perhaps they are now.

What do you think?

Bro

Okay, that sounds much better!

Perhaps the administrators of the site could decide if they would put a new forum in just dealing with polls, surveys, and the like??? that would make them much more prominent and easier to follow.

Rita

Hi Bro, I'll chime in now, if I may.
We are quite a savvy bunch, if I say may so about our members, and when questions arise we start to wonder what's up. Does that person have an ulterior motive (you are not the first we've asked, or the last), do you work for someone who might use our members for their benefit or are you just a curious person with no affiliations to any company or website?
I'm sure you don't mind us asking.

Thanks a bunch,

Hi Timo

I would fall under the latter category - I can promise you that I have no affiliations with any agents that might stand to benefit financially or otherwise from anything I am proposing (besides aiding the quest in search of better treatment for rheumatological conditions such as AS).

I see huge potential in this site and its members, and just wanted to suggest some ways kickas might further realise its potential by leveraging its substantial and active userbase to better serve its constituency.

Cheers

Bro

Are you going to tell us what you're really doing or do we have to drag it out of you kicking and screaming?
What you are proposing is a database used to target advertising. 'Fess up now or we may have to call in Bruno.

Why do I get the sense that before anyone takes any of my posts seriously, I first need to tell the whole world how my sternum is giving me more grief than my hips were yesterday, or how I wonder whether the blurry patches that have started appearing in my vision are from prolonged staring at a computer screen or something else...

Not a very trusting bunch are you? Come on guys - as I have said from the beginning, everything I have posted has been with the best of intentions. In any case I think I have gotten my message across, though perhaps not in as positive a light as I might have hoped! I will leave you all in peace with these issues now.

Perhaps the next time you hear from me will be when I attempt my first forays into the world of NSD (if you'll still have me)!

Bro

Bro,

I think if you will do some research on the AS members, usually when someone signs up they post about themselves and all their ills and pains.

Then as they go along with more posting as you get to know us we get to know you better.

I have been watching this post and your others and the responses since the beginning, i do have to say although you are doing nothing wrong and you say you have the best intentions for us Kickers, this is the first time since I have been here that a new member has approached things this way...which may leave some people here a little leery.

Usually when a member has an idea it is a good idea to run it by Admin first to see what they think...they hold the key to what is acceptable and unacceptable.

I dont think what you are wanting to do is bad, i will always contribute that could help in finding a cure or help for those of us that suffer from AS or ay other reason people are here, I just think maybe you have gone about it in a different way than we are use to.

Like someone else here said alot of us are a tightknit bunch and we all look out for each other so we really only have everyones best interest at heart.

Most of our members here when they post are ready to jump right in, not so much secretive about ones self like people think you are doing....just a thought.

Take Care,

Lisa

Bro, it is not that we don't want to take your posts seriously, or that we are truly suspicious of you, it is just that this is a group made up of people and people have these things called 'feelings' and we generally like to share some of these 'feelings' with each other, and that is how we get to know one another, and that is when the synergy of the site really comes into play.

You don't have to write and tell us your whole life story or even every little symptom you may or may not have! Just a little bit of info about yourself would be great. And yes, believe it or not, we do want to hear about your 'sternum' and your 'blurry patches in your vision'!

Do you have blurry patches in your vision because you have iritis? Did you know iritis is the second leading cause of blindness? I know that now because someone told me on this site after I had relied some personal information about my eye problems!! My eye doc didn't tell me!

Do you see what we are trying to get at?

You seem to be a very intelligent, thoughtful person, and I am sure there is more to you than meets the eye, so to speak. Come on let us in to the real you, share a little.

If you still don't want to tell us about yourself, that is okay too. If you still want to keep posting your ideas, please, do so, just remember we are people and people want to know about people, not necessarily about ideas. But this forum is for posting whatever you want, within reason of course, so you may do so. And the same goes for people replying to your posts, we can post whatever we want, within reason. If you decide we are all a bunch of lunatics, pestering away at you for your personal information that is obviously very private to you and hard for you to share, that is okay too. Just whatever you do, keep reading on the site, don't go away totally, you might need us some day!

Take care, Bro.

Rita

Bro,
I think your idea is fantastic! I LOVE seeing polls and the fact that I'm not alone in what I'm feeling. But hopefully the above posts can explain the worry. I think if the admins say go for it, then I'm down for it.

Marnie (whos gonna be around a lot more if yall dont mind)

While I salute your ambition here, I am afraid I fall in with those who aren't real keen on having things such as these spreadsheets you propose added to KA. The main reason I feel this way is because, as others have eloquently noted, statistics have nothing to do with why I come to KA. I come to KA to meet others who can share in my experiences (and yes, my pain), who I know I can talk to about anything, be it AS related or completely off-topic. The reason for that is obvious--we all share a defining characteristic that plays a large part in shaping our world view, therefore we all share at least one large patch of common ground. I'll leave the statistics to the medical and government sites--they can handle the number-crunching, as far as I'm concerned.

Second, as many have also pointed out one way or another, such spreadsheets would, honestly, have no real research value because they would not be maintained utilizing strict research controls or protocol. Would they contain interesting information? I'm sure they would. But what would it all really mean, especially if you are going to introduce arbitrary restrictions such as "those not diagnosed with AS should not participate." You might argue that this is not arbitrary at all, but a strict definition, but I would have a very hard time accepting that for a very simple reason--in the past five or six years here at KA, the question of "average time to AS diagnosis" has come up several times, with frightening results. The average time most of our members took to receive a correct diagnosis of AS (which was correct the whole time they were seeing medical specialists, but completely missed or dismissed by said specialists) is staggeringly high and measured in years, not months. By saying that all folks without an AS diagnosis should not contribute, you are effectively eliminating a large portion of the KA populace for no good reason.

Finally, I have to admit I am troubled by this statement made in one of your follow-up posts above:

"The reason for suggesting only people who have a confirmed diagnosis of AS participate is because it makes the data more credible for anyone looking at it from the outside."

While one reason this statement bothers me is obvious--my aforementioned aversion to excluding those who have not been officially diagnosed with AS, my other objection is less clear but no less important. You say such exclusions would make the data more credible to anyone looking at it from the outside, to which I say, rather bluntly I'm afraid, "So what?" As I am sure you noticed in the responses to your first post related to the "outside interests" topic, the vast majority of folks here really don't give a rip about folks looking in from the outside, no matter how well-intentioned they might be. While I'm sure some view this as short-sighted and provincial, many here view it simply as a survival mechanism. Just as most KA members have had to wait long periods to receive an AS diagnosis, so too have they had to learn to rely on themselves in many, many ways simply because AS is an orphan disease that is simply off the radar of the mainstream medical community. Many came to KA battered and bruised by their experiences with doctors and nurses, while others had been wholly frustrated in their fight to find out something, anything, about this rare disease with the unspellable name with which they had been diagnosed. Finding KA was like finding an oasis in the biggest desert in the world--at last, we had all found a place where we belonged, where we could once again feel like part of a group instead of feeling left out or ostracized, as many AS patients felt before finding this amazing site. See, the vast majority of the people here haven't been treated too well by those on the outside looking in--and this includes a diverse group that ranges from the aforementioned doctors to close family members--so the really have very little use for those on the outside. Don't get me wrong--on a personal level, I always attempt to educate the doctors and nurses taking care of me about AS whenever possible, and to me, this is the most important contact I can have with the non-AS world. Through direct contacts such as these, I do my part to help out; once I even volunteered to speak before a group of doctors about my experiences with Vioxx (when it first came out as part of the radical new cox-2 inhibitors--radical for about a month, that is). I would gladly participate in research studies if my doctors asked me to because I trust them and have learned by trial and error that I have found medical professionals who really do care about me as a person. To people like these who have been happy to develop concern and interest in how I feel, I will do whatever I can to help. To anonymous others who might be "looking in" to KA, I say, frankly, "Yawn." Let them get to know us as people before they worry about knowing us as numbers.

I'm sure a lot of this will come off sounding pretty harsh to you Bro, and I'm afraid that can't really be helped. While a part of me admires your enthusiasm and desire to add things that you feel make KA a better place, an equally large part is more than a bit put off by your rather "bull in a china shop" approach to joining KA. New ideas--and more importantly, new members, are always welcome, but it strikes me as odd that you have come to KA and immediately proposed large changes and enhancements without having any idea as to whether anyone here really desires to see such "enhancements." That is just my opinion, and yes I do realize (quite fully, thank you) just how curmudgeonly much of it sounds, but after battling an incredibly severe case of AS for 24 years, I no longer try to hide that side of myself if I feel the situation merits its use. (And now I'm going to go back and read all 18 responses that were up before mine--I read a couple before I posted, but oooh do I have a feeling I'm going to see a bit of a hornet's nest when I start reading. I bet this post brought out some strong reactions.)

Brad