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

I have been reading this thread this morning and I must say I am disgusted that this is happening yet again.

Although there is a disclaimer on the main page of the site, when one of us presents his/her own findings as medical fact (by use of language), it causes problems. It leaves us open to all manner of legal issues to my mind, not to mention integrity based ones.

John, I have so much respect for you, for your dedication to beating this disease, your unstinting resolve and your desire to share your personal, non-medical, findings with all who come here. You have found your magic bullet and want everyone to know the benefits.

John, I value your contribution to KA. You have much to share that is of great worth and I think we all recognize that. But I've said it before, your language is the issue. How you talk to the rest of us at times is a problem, and it's one that is costing us members. Often it appears that you have no respect at all for anyone who disagrees with you. If that is not your intent, well then it is a misunderstanding that needs to be cleared up. You obviously don't see it, or you would heed when others ask you to watch your tone (how many times has this come up over the last eight years? Too many.). That you have been asked repeatedly to use a more respectful tone (and we lose members directly due to this tone) proves to me that you are either blind to it, or don't care. That this specific issue raises its ugly head every couple of years (seemingly) speaks volumes.

This is the best AS support site on the web. Would you rather alienate the people who come here, thereby guaranteeing that they do not find out about the diet and the research being done in that area? Or, would you rather respect the people who come here, ensuring that they stay here, so that they can have access to this information that is currently nowhere else on the web in such awesome concentration. That's what it comes down to, to my mind.

I'm sorry, John. I know you're probably feeling beset upon from every side right now. Your frustration is evident in your last post, during which you demand that we prove your language is a problem. The proof is there in your posts, it's in the language you use, in the words you choose.

You are valuable here, John. You have been a good friend to so many. I would be no kind of friend if I didn't point this out, if I let this continue without speaking up.

Warm hugs,

Chris, I didn't know this existed. Thank you for bringing it to the membership's attention.

Via this post I am making a formal request to the Administrators and President of KA to remove this from the ZoomInfo site. It misrepresents KA horribly and implies that Dr. Ebringer is a contributing member of KA, indeed, even more, that he is the official contact for KA. He is not. It is a lie.

No wonder medical experts have advised people never to come here.

Ok John, Here it is..



Seem a little condescending to you? No??? Ok, then so be it.

Well, I'm a very new moderator, but let me try pouring some sweet-smelling oil on these troubled waters. Hopefully, I won't get any of my facts wrong but I'm sure other mods/admins will correct me if I make errors.

This site was started many years ago. It was never a foundation or sponsored by a corporation. The admin/moderator team has been comprised of volunteers over the years. From reading their individual posts, I would say they hold mixed views about the value of NSD or any other treatment of AS. They try hard to protect individual members from being attacked or treated rudely. Over the years, John Dragonslayer has come in for his fair share of rebukes just like other members on both sides of the NSD debate. He has not been protected because he is an admin member. The goal is to create a forum where people can debate and share various ideas on the treatment of AS and other related inflammatory arthritises as well as provide support, humour and compassion for each other.

The nature of the disease, including chronic pain, insomnia, disability and reactions to medications, mean that members may sometimes be feeling miserable and their posts may reflect that. People may be more or less reactive at times, even if they regret it later. Those who have found an answer to their illness, whether it's NSD, MMS, medication, or mind-over-matter, may be passionate in their contributions and sometimes that comes over as arrogant or condescending. There may be members reading this posting who recognize themselves in that last sentence and have suffered being pointed out for it.

It's not easy to strike a balance between encouraging all sides of an issue to be shared while minimizing disrespectful language or personal attacks. We've witnessed that previously when we stray into the political arena (the threads about healthcare are a good example). People naturally get passionate about what they care about and sometimes allow angry or defensive language to creep into their posts.

When I read this, I try to point out the problem in as diplomatic but clear way as possible but I'm not sure I'm always successful. I have caused upset to individual members through my clumsy efforts at times. As an untrained volunteer, with no agenda to push other than the continuing supportive atmosphere of KA, I may not always get it right. I hope that members forgive me for that, knowing that my intentions are good.

There have been requests to include a disclaimer in every post that has some kind of medical recommendation in it. That would get very difficult for members and make posts very long. I've often described my personal experiences with various opioids, such as fentanyl, and have never posted a disclaimer. This site does not claim to be a medical site and does include a covering disclaimer on its front page. I trust that all members recognize that almost none of us have a medical background and that we must take personal responsiblity for how we react to or use anything that is posted here.

I have been on other forums (or watched my hubby on his various metalworking or woodworking forums) and have never seen another with such as sense of committment to the wellbeing of all members and such an effort by the admin team to remain neutral, respectful and protective of its membership. That doesn't mean that every member of the admin/mod team will get it right every time but, clearly, on balance they've been successful as the site is still going strong after many years and most members feel it's a special place.

To finish with a quote from Lon:

I love this place.

This reply is to anyone and everyone:

Just a little story for you...

Most of my family follow religion - I do not.

Sometimes my family talk about their faith - sometimes I ask them about it myself.

They never lecture me about it, they never try to convert me, they never give me a hard time because I have different ideas to them, they never make me feel like I am an outsider, they do not judge me by my lack of faith and they do not think they are superior to me.

I do not try to pull apart their faith, I do not belittle or make light of it or them, I do not judge them by their faith, I do not think I am superior to them.

We have never discussed the way we all behave towards each other on this subject - we have never had to - because we love and respect each other enough to be considerate to each others feelings, opinions and beliefs. We do not have to - but we do. We are a family.

We chat about the subject regularly - but because of the trust and respect we have built up with each other no-one is provocative on the subject and no one takes offense. We value each others opinions and agree to disagree amicably.

**** **** **** ****

Of course we fight like cat and dog about the silly things in life!! We swear, bicker and fall out on a regular basis!

But when it comes to the important things, we stick together as a family. All members of the family are of equal importance. Every member of the family is wanted, needed and cherished.

Please think about this - I am speaking from genuine personal experience and I am speaking straight from my heart.

I love this site and I know that we can find a way to rub along together.

Take care everyone,
Best wishes,
Tink

Hi all. I've been here since pretty well the beginning and I have to say this site is not an NSD site! If it was only that, I wouldn't be here.

This is a support site which has covered and is covering *all* aspects of our disease which is reflected by the myriad of forums we have. As long as I'm here that will never change.
NSD, dieting, or whatever are just some aspects of the whole picture and we should never place one treatment over another because all of us are different and have different situations.

As to the temperature of the posts.....I have to agree with Kat that John cannot see the results of his tone. This is so unnecessary!

Hey, 30yrvet:


Well, You got me here:



Understand, it was in response to Your own derisive attitude, and I really react badly when others do as You have done--by editorializing my statements and taking them to illogical extremes, to wit your characterization of Yourself as "unwilling" I never said that or even implied You were unwilling; it is not the same as being "unable"! As I stated before--"expect to reap as ye sow."

This illustrates, more and more, the limitations of this medium--if we were speaking to each other in person, we might use exactly the same words, but convey a more friendly tenor to each other; face-to-face dialogue is just that much better.

Regards,
John

Hi, Kat:

Thank You for posting and I appreciate what You have said.

And I am frustrated that what I say is, as I have observed to 30yrvet, misquoted and amplified or adulterated to suit the whims of the attacker--any idea can be distorted and taken to some illogical extreme. That is what frustrates me.

I don't expect everyone to accept every single thing I say, but the habit opponents have of "re-interpreting," berating, and taking apart every thing I say is TEDIOUS.

Sometimes the language gets heated--but is it just so on one-side? Then I am at fault!

No, I don't want people to leave this site because of me--but perhaps they should crusade against me, for the sake of the community, if they feel so strongly about what they have to say. Leaving does not seem to be the caring or responsible thing to do!

I have no goal of offending anyone at all, but I do have the singular objective of encouraging other people with AS to avoid what I have gone through, to learn what I have practiced for the previous eleven years with no symptoms of active AS. I want others to avoid the symptoms I do have--that of the permanent damage that improperly treated AS causes.

I have been honest, and I stand by everything I have said.

But I prefer to not stand by idle, to have what I say get twisted, and the message distorted by detractors. If I have been condescending in this, I would prefer not to be, but if I have returned equal condescension, it was not meant to become unfriendly--the rhetoric sometimes masks my true nature.

Certainly, I care about everyone here and if I did not care I would not bother responding to them at all.

Ultimately, once the noises of unreason die down and we are each left alone with our AS, we should search for our own capacity to conquer this disease--it is then that enough people will decide to stop doing what has already not worked for them and never worked for others. It is our confrontation with ourselves that is the real battleground.

Now, perhaps I should feel beset on all sides--but it does not bother me; if I have been condescending then I deserve condescension right back, and I'm fully willing to take even more than I dish out, as long as the message remains clear.

I appreciate Your friendship and kind words, and will make better efforts to be more clear in the tone of my responses--that we may disagree with each other and argue from time-to-time, but my own intention is not to add insult to the injury of AS, but if I'm not a nurturing, comforting individual I would rather act as a symbol that there is another way--perhaps some of us will not need comfort if overcoming AS on our own. As my Latin teacher used to say "If you can't be a shining example, at least be a dire warning."

Thank You, Kat,
John

When people are on either side of a highly polarizing issue,



I'm sorry, John. I know you're probably feeling beset upon from every side right now. Your frustration is evident in your last post, during which you demand that we prove your language is a problem. The proof is there in your posts, it's in the language you use, in the words you choose.

Hey, tiredofpain:

You are misleading others about the nature of this site, but perhaps it is not Your fault.

I will clarify.

Professor Alan Ebringer has allowed KickAS to publish the papers from his group at Kings College.

He has given two in-person seminars for members of KickAS--one in San Antonio and the other in Las Vegas.

Ebringer has agreed to answer some few questions we send to him from anyone, and he is interested in contributing in any way to help members. In fact he has spent many hours in individual consultation with some of our members.

Beyond these, Ebringer has no direct involvement in KickAS and it is NOT his site.

We are a private site, created by donations and we continue operations thanks to donations. Although the content is wide-ranging because of the nature of the topics discussed, the primary reason for KickAS is to offer information not available other places--information especially about diet and AS.

In the early development of KickAS, there were similar acrimonious discussions about diet, so this topic was given its dedicated forum, however, this fact does not mean that the main or other forums will be immune from discussion about diet--in does mean that diet is important enough to enjoy its own forum, for those with AS who wish to explore the minutiae of this treatment, considered by Ebringer et al as an adjunct to standard medicines.

Although KickAS promotes the work of Ebringer et al, he does not own or support the site except in the ways already explained. Why there is linkage to him through the zoom information is not really clear.

But I will make something VERY CLEAR: If anyone comes up with an effective method for eliminating AS, or even a better method than Ebringer's, we will immediately overthrow Ebringer for the new guy. And as much as I like Alan Ebringer, I would LOVE an easier answer for AS!

We are NOT a fan site for Ebringer--if it appears this way it could be because RESULTS matter more than debate.

If You feel duped, it is certainly not our fault. If anyone does not wish to ever hear about diet again they can not read certain posts or even leave, but by all means leave with as much histrionic blather, as much sound, and as much fury as possible,

John

I really hate to see all this ill feeling.

Surely the answer is to keep all diet related posts in the diet forum.

Then, if you really are not interested in the diet, don't go to the diet forum.

Peace to all, stress makes me hurt, I avoid it where possible.

I wish everyone good health.