Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Power to the People!

You mean patients telling doctors how to treat AS? Of course they wouldn't go for it. Over the last 7 years we have had thousands of posts about what treatments works and what treatments don't work. Drugs? Thousands of testimonies about the good the bad and the ugly things that drugs have done to thousands of members who have taken them. The score is definitely not in favor of the patients. Why would a doctor want to read those posts when they can't refute them or come up with a better way to treat AS? And what are they going to say when the most successful treatment to be found here is a simple change of diet?

No, I don't think they are ready for us.

Yeah I agree....

Amy:)

Well said Pete.
Dan

Ok, Ok. I seem to have opened a can of worms here. The level of skepticism towards the medical profession and pharmaceuticals is much higher than I had anticipated (not unjustified though I might add).

I'm not going to get defensive about this - as I said it was just an idea, and anyone here may choose to do with that idea as they please (that was the reason for posting!). If nothing else it seems to be bringing some underlying tensions to the surface which is never a bad thing, right?

Stay well

Bro.

Bro,

I can see both sides of the coin....I see where you are coming from but I also believe the people ADMIN here obviously has done something right in these years to have over 5000 members now ,and they stay right on top of everyone and what is being posted here.

There is nothing stopping anyone from giving out Kick AS web address to anyone. As it was said earlier we have alot of lurkers who never post.

Personally for my 2 cents worth I dont want ANYTHING about Kick AS to change..it to me is working perfectly the way it is...but I totally respect your opinion and please dont get upset with the others here, alot of us feel like here is like a 2nd family and we are very protective.

Hope you keep posting,

Lisa

Thanks Lisa

There is nothing wrong with a little healthy debate. I fear however that many readers of this post have wrongly interpreted my intentions.

Not at any point have I advocated that kickas as it is now should be replaced in any way. I have suggested means by which it could possibly be developed further in the future, but I made explicit mention of the fact that if this was to occur it would have to be done in such a way that it wouldn't impose on the dynamic of the site as it is today .

The defensive nature of the responses to this post more than anything demonstrate the loyalty of members to this site, and I think this is a great thing. I purposely put out my recommendations for everyone's consideration, and you might say that the people have spoken (loud and clear).

I'll be around, be it as a lurker or an active poster. Wouldn't want to miss out on any of the fun!

Bro.

Hey Bro.

I've spent quite a lot of time deliberating over how to reply, and even now I'm not sure I'll get it right.

Your posts have been most thought provoking but distinctly different from most first-time posters. Most people just say hi, or ask a question, or get involved in a discussion, but that hasn't been the case here. Not criticising, but as someone who's been around KA for a good five years the difference is hard to miss.

Before we start changing the world together, why don't you tell us a little bit more about yourself? Do you have or know someone with AS? Another rheumatological or chronic pain condition? How long? What works best for you (or them)?

I know this probably sounds cynical, and possibly rude, but both of your posts have been so full-on, but you haven't told us much about yourself in posts or in your profile. That's certainly your perogative, and you don't have to answer my requests, but I'm not sure I'm going to start lobbying for change or modifying a great place like KA with a virtual stranger.

Jeanna

I can say for certain that there are at least two AS specialists who know about and appreciate this site. While I cannot speak for both of them, I can say that the one I know has said outright that the amount of knowledge and experience at KA is amazing and a wonderful resource for people who care to access it. Whether or not he will come here to post, I do not know (we have discussed it). But he has come here and he told the second specialist about us several years ago when I first met both of them, recommending that she check us out.

Hugs,

Now don't go and be deterred so easily. Your enthusiasm is great and your energy admirable. Folks take time to digest ideas and things take time to sort out.

You said a mouthful with your idea and it is human nature to see the flaws in a notion that suggests a change. Give us time and keep tossing out ideas with some specifics. KickAS has added lots of forums over the years. Maybe your idea can fall into a new forum. I think everyone here would do just about anything to advocate and assist in a cure or treatment since our heirs may or will inherit this disease. You keep spelling out your idea and I'm sure lots of good folks here will keep listening. Good ideas often get lost without good skills of persuasion.

I do agree with Jeanna (Strutsy). It kinda helps us get on board with your enthusiasm and ideas if we know a little more about you. OVerall though I sure hope you keep posting in the same vein and don't give up on us too quickly.

As so often, Jeanna has beautifully put into words, the way I was feeling about this.
Even though my first thoughts of this idea of yours, were negative, I do realize that we so easily jump all over new people with new ideas and this may not allways be fair. In this case though, as Jeanna has said, I felt a great uneasiness about a total stranger jumping in with ideas but no introduction whatsoever about yourself.
I think that if you think about this, you would have to agree that this is a very strange way to go about this. It gives me great pause for thought about you, I must say.

So why not start over and introduce yourself?

Maggie