Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group discussion with DragonSlayer (DO NOT READ!)

Well Brad, I am still waiting for the Trampoining Forum I asked for...............Huh!!!


A pole Vaulting forum would be ok if you can't afford the Trampolining one.................!


I guess relevance is the critical part of deciding whether to add forums....(Trampolining is relevant by the way).

Thus, all mainstream treatments and those that are called 'Alternative' should be available to KA'ers.......it has to be said that Diet has a right to be here, so do NSAIDS, physiotherapy and Trapolining.......on with the Motley I say. this has been a good thread generally so keep your admin hat on the desk for the moment and let us carry on the discussion.....................By the way there is a new post in the Trampolining forum..........It is about the ups and downs of AS.............and that really is the prime focus of this site.........I visited another recently.......KA is without doubt the best, probably because of the diversity of opinion................be pleased with these debates........Down with Mig

I do not understand the above comment. In my computer, the following are the only sticky sections in the "NSD and diet-related"

No/Low Starch Diet Success Stories
Recipes and important links
NSD QuickStart and tips
THE STARCH CONTENT OF FOODS - THE LIST

To me the above list is what makes this forum "biased". If it had one more sticky, say something like "Poor response stories" so that it doesn't appear too negative, that would i am sure make many happy, as then there is equal encouragement for all types of stories.
At the end of the day , that is my main concern. I do not want to start some kind of row, which harms the forum long term. I strongly believe that adding that extra sticky would make all the difference, and will perhaps keep the forum inflammation down in the future.

I don't know how to explain this any more clearly. The forum you are citing has those sticky notes because the ENTIRE forum is designed for supporters of the NSD. It is not intended to be a debate forum--if some go there to start debates, they do so at their own risk because the forum IS intended for NSD supporters. In that regard, you're exactly right--the forum IS biased, and intentionally so. As a counterbalance to that forum, we offer the AS Pharmacy forum for those who do not favor the NSD and choose to go with the pharmaceutical alternatives. We would not put up a sticky section about non-success stories in the NSD forum because it is essentially designed for those who've had success with it. I believe that all of the admins believe this to still be the case, but in the matter of fairness, I will bring it up with them and see if they feel circumstances have changed and we should reconsider.

In the meantime, that does not mean, of course, that you cannot go into the NSD forum and question what you've read there. By all means, feel free to do just that. All of the members there will be happy to debate the diet with you and answer your questions. Some who answer are very nice about it, and as we've seen in the past, some get defensive when the diet is questioned and aren't as nice. If you run into any negative situations when discussing matters in the NSD forum, by all means bring it to the attention of the admins and moderators and I promise you that the situation will be handled appropriately. The KA rules and regulations require that all members treat other members with respect, and that includes supporters and opponents of the NSD; unquestionably, those two groups have presented admins with the most violations of that rule in the past, and my fervent hope that the past is where those types of debates remain. I like to think that we've moved beyond the contentious start/no-starch debates of the old days, but I have been proven wrong about hat many times before and hope not to be again.

I hope that further clarifies the issue.

Brad

Don't worry, Alan: I have no intention of EVER mucking up any thread in which you're participating!

Brad

pspondylitis, your request for a sticky thread has already be adressed by a SITE ADMIN (higher authority than moderators) here and I know that you have read it. No/Low Starch Diet Success Stories


From it I quote Mig's replies:

"Hi pspondylitis,

I'd like to reply to your request, since I can appreciate your misunderstanding.

The purpose of the NSD and Diet-related Forum, together with the Diet-specific Recipes Forum is not to provide a 'balanced' view but rather to offer an area dedicated to those interested in supporting each other in a diet approach to the treatment of their AS. You may find the biologics forum equally biased.

Within the context of a site with multiple forums available, providing similar dedicated areas of support to those interested in a wide variety of treatment approaches, KickAS.org offers the best patient to patient support (imo) where we can share with, and learn from, the experience of others coping with AS.

Set-backs and failures, for those who have not found success with any given treatment are discussed in every forum on KA, but KA is all about support and highlighting what works and celebrating each others successes. I fail to see how making any of our failures into sticky posts will serve to encourage anyone to carry on their fight to find the best way to manage their disease. We've all probably experienced enough failures in our lives.

Spirited and constructive debate is both healthy and welcome in all forums of course, as long as we continue to be mindful and considerate of each others treatment preferences, personal experiences, and opinions.

It seems you have been involved in some very balanced and open discussions regarding the merits of NSD and the scientific research behind it. That you may not find many like-minded viewpoints within this forum, should probably not come as a surprise.

Thank you for your input - we hope you will continue to enjoy KA!
mig"


and then after that:



"Hi pspondylitis,

In the hope of improving your understanding, allow me to try once more also. KA is not offering a treatment - but offers a *place* for discussion. KA is a shell and home for people to discuss. The site is not offering medical advice, nor are we doctors.

KA's forums did not come to be through top down design but were opened over the years based on interest expressed by it's community. Interest in diet was such that a diet forum was created early on in the history of this site, just as a biologics forum came to be when these newer treatments became available. The volunteer team that helps to oversee the site does not decide on content. Content is created by members. If there had been few successes and multiple failures - this forum surely would have ceased to exist, rather than to flourish as it has. The percentage or balance of thread topics you find on this forum is a direct reflection of the members experiences - if the majority are finding the diet beneficial - that's just a fact!

Re: the successes sticky topic. Again the thread topic was initiated by a long time member of KA. I can't even recall if it was stickied from the beginning or if it kept naturally being bumped up so often that we eventually just stickied it there for convenience. Regardless, if so many had not piled on to add their stories, it would have been un-stickied. You are correct that people find it a source of encouragement!

I absolutely agree that everyone needs to balance the risk versus benefits for themselves, in the context of their own health situation, after doing their own research (using whichever combination of resources they feel are valid) and in consultation with their own physicians. I understand your concern for others, I have felt similar concerns myself in the past on a variety of subjects discussed, however, I fundamentally respect the right of others to make their own choices and decisions.

I'm sure you can appreciate that without a stronger impetus to change a winning formula that has helped so many - this is KA!
mig"


Please respect the decision that has been made.

Thanks Kiwi; I don't know how I missed the fact that mig had already addressed this topic in excellent fashion, but I did. Now that I know the topic had already been covered, I wish I hadn't wasted time with the other posts, which may have only served to confuse the matter.

(Now I know how I missed it! I just followed the link you provided and realized mig's response was in the NSD Forum, which is one I never wander into. Would have been nice for him to let me know that one admin had ALREADY addressed the issue with him.)

Thanks!

Brad

pspondylitis,

What you've done is entered a house and attempted to rearrange the furniture (i.e. your bellyaching about a sticky post). Were you ever to attempt that in my house (living quarters), that would elevate you to intruder. Your outcome in that situation would be mighty unfavorable. I am still extremely suspicious of you, that you aren't a plant or a purposeful disruptor of some sort.

All,

Regarding diet and newcomers, everyone has the same opportunity as Dragonslayer to promote their preferred treatment. Perhaps this is the strategy you should employ.

what about those who are interested in diets other than NSD? it doesn't appear from the forum description that it is entirely for NSD. in the forum description it says "Discussions about the dietary control of AS, especially it's treatment using starch-restrictive regimens." i suspect that there may be others who have an interest in dietary control of AS that may be interested in expanding the discussion outside the realm of simple starch-restriction. i think that this post from the 'failures of NSD' thread is a good example -

"I too, tried NSD, was very strict, tested with iodine for about 6 months. I WISHED I would have felt a difference. I did try no dairy toward the end for about 2 weeks, but by that time I was so disappointed, when no diary didn't seem to do anything, I gave up on the diet. I would have kept up with it had I seen any change in my pain level, but I did not. However, I think there have been enough people on this forum who have had success, I think anyone even slightly interested should give it a good try. Why wouldn't you try something that so many have had great success with?? I do applaud anyone who tries this diet--it takes a good deal of discipline, but if it helps you, I would think it would be well worth it.

From my own experience though, it was a major disappointment. I felt really sad and down and dejected because I wanted so badly for this to work. (and I tried so hard to make it work!!) So, just be cautious if you try it and go in hoping for the best, but don't be too let down if you give it a good try. Just like some drugs work for some of us, and not for others, I think this diet works for some, but not for others.

I would like to figure out why it didn't work for me (B27neg?--but then again there have been other people who tested negative who had good results). Maybe if there was more discussion and studies we could figure out something else that would work better (food/supplements/drugs) for those who were not successful with NSD."

it can make it difficult to discuss other diet options for people who do not succeed with NSD in a forum where only NSD success stories are celebrated and failures are often ignored, explained away by things like Strutsy mentioned, and sometimes even lead to comments such as "the last thing we need is more false claims against this miserable regimen. But that will be Your own karma. So either 'GIT 'ER DONE' or get out of the way because we have seen Your kind before."

however things may be much better than they appear as a recent post on vegetarian diets in the NSD forum shows that it is definitely possible to have an alternative diet discussion in the diet forum without being too intrusive.

[Note from Brad: Please note that my response was made after jroc had originally posted his last reply. Shortly thereafter, he let me know that he had gone back and edited his post and removed a couple things. Therefore, as you are reading my post, please note that if you come across something that you no longer find in his post, it's not because I decided to just make stuff up willy-nilly! I am heading to bed right now and thus don't have time to go through my own post and delete any such items, although I will try to remember to do that tomorrow. --Brad]


jroc,

This is absolutely my last post addressing this issue. At this stage, I feel that both you and pspondylitis are more simply goading me on to see how long you can keep this discussion going. As I've learned today, mig already addressed the issue pspondylitis raised concerning putting up a sticky post for non-success stories; if anything I said in my posts contradicted what she said, that is my mistake, and you should defer to what she said in her posts. She did an excellent job of explaining why the forum was created and what purpose it serves now.

As you are fully aware of, the forum IS called "NSD and diet-related." Therefore, by it's very name, you are right, any diet can be discussed there. You say that "some may prefer that the forum was more true to it's description of "Discussions about the dietary control of AS, especially it's treatment using starch-restrictive regimens" instead of an intentionally biased forum designed for supporters of NSD." Fine--feel free to make the forum just that. Nobody is stopping you now, nor will anybody stop you if you start doing that. Just because the forum was set up primarily as a home for NSD folk, you are right that it was ALSO intended to be a catch-all forum for all diets; I was remiss in not mentioning that aspect of the forum as well. There is absolutely no reason you cannot start discussing other diets in there, nor has there ever been any reason you could not carry on such discussions in that forum. In fact, I would guess that discussions of ANY type of diet that can help ease the pain of AS in ANY way would be greatly welcomed.

You go on to say that "it can make it difficult to discuss other diet options for people who do not succeed with NSD in a forum where only NSD success stories are celebrated and failures are simply ignored,. . ." Why do you say failures are ignored? That simply is not true. What you're really saying is that these failures aren't highlighted to your satisfaction. I say that because a quick search of the KA archives would turn up post after post after post from people who say they tried the NSD and it didn't work for them. Some of those posts are very detailed, highlighting what they ate, how long they ate it, etc., while others simply state the basic facts and move on. None of those posts are censored or deleted, none of the members who make such posts are warned that those types of posts are not welcome or somehow outside the rules and regulations. They are not stickied for the reasons mig has already outlined, so I won't go any further on that issue.

Finally, you say that if non-NSD posts are made in that forum, they often run into posts along the lines of "'the last thing we need is more false claims against this miserable regimen. But that will be Your own karma. So either 'GIT 'ER DONE' or get out of the way because we have seen Your kind before.'" To that I would suggest this: Ignore those comments, and any others that don't advance your cause. I dare say many NSD supporters currently choose to ignore your comments, and I would ask you to do the same for those who post comments that are contrary to your own or attempt to denigrate your position. It is pretty easy to recognize a comment that, while contrary to your own, is intended to further a good debate, as opposed to the comment you cited, which was clearly intended to belittle the poster's point of view.

Just as some of your comments have skirted around the edges of the rules and regulations, so that comment does the same thing. If you begin making more posts regarding different dietary treatments for AS in that forum and comments are made that DO push past the edges and clearly violate the rules and regulations, then of course we would step in and offer you the same protections and considerations that every other poster receives. But, for any other comments, I say use your common sense, ignore them, respond with humor, or deal with them in any way you see fit. Just as you have made it clear that not everyone here agrees with the sometimes overzealous support of the NSD, I imagine you'll find that not everyone will agree with some of the topics you bring up. It's all in the spirit of healthy debate, right?

I think that between the posts that mig made and the posts that I've made here, we have clarified the role of the NSD and Diet-Related Forum and acknowledged that, while any type of dietary posts are welcome in that forum, it was originally established primarily as a home for NSD supporters. If you care to continue the discussion, I think it would be best if you did so in a private message to me rather than continuing to go round and round on the topic in this thread.

Brad

Hi, Jeanna:

A recent member, “pspondylitis” has just completed his own evaluation of the NSD. It did not involve much effort or thoughtfulness, but only some basic dietary modifications over a very short period of time. There was no way to eliminate the subjectivity of his results or provide any way of fact-checking. Yet he wants us to put up a forum for people complaining “the diet did not work for me!”

Where would be the fairness in that? I don’t want to give in to the hoax; he fooled several people here, but I recognized he set himself up for failure and his agenda was too obvious from the start.

You must remember others who claimed up-and-down that they were NOT EATING STARCH, but when pressed they admitted things like, “…well, I’m not going to give up my gourmet popcorn on Saturday nights!” So the people with nearly zero experience and no way to think about their actions critically or how their opinions will affect the lives of others should be provided accommodation and validation?

If we listened to the dissenters early enough (if the right side had lost the starch wars), there would be no NSD Forum today, and the white stick brigade would continue on, unchecked. The reason we “dieteers” fight so vigorously is not as much against diet-ignorant people, but for those who will, someday in the future, be helped by it.

And that has already been many fellow sufferers. I do not apologize for excluding failures, especially when they were, like “pspondylitis,” all along planning to fail, nor do I apologize for publishing only Ebringer’s papers because, outside of the scientific journals, these are not generally available. And I once considered publishing the paper “Ankylosing Spondylitis is not Caused by Klebsiella,” but it is not available except via PubMed and there are copyright rules. But I would be quite pleased to have them put side-by-side and evaluated for DOE, methodology, data manipulation, and statistical controls; the genuine article would win out easily.

Therein of course highlights a basic fact about “theories:” When a theory “appears” to be valid by producing positive results, this outcome does not disprove opposing theories, but it raises the bar to incredible heights. I have said before that I am willing to publish any theory on this site that has worked against AS. There must be the little detail about RESULTS, however. NOBODY has offered any—so by now do You have any recommendations at all?

Ebringer has experience: Twice as many patient-years as the next “expert” in this field of AS research. Ebringer has results: Many hundreds have over the years had enough success employing his theories that, even if the theories were wrong, the methods will continue to be employed and a new theory must necessarily evolve which meets the same logical testing. And Ebringer has the patience and has taken the time to actually lecture our members and made himself available for questions, and also spent many hours taking individual histories and making recommendations—uncompensated for his time.

Persons who are new to this site or this disease should be given the right to make their own choices. Nobody has complained about being ‘inundated’ with diet information except people who not only have to go out of their way to find insult, but they are never really new to this site.

When I was given NSAIDs for AS, the package inserts kept changing, especially for Voltaren, and I remember there was so little information that my doctors could not even guess at what would happen: Was it 14 GI incidents per 580 human weeks of taking this drug? And does that mean it will eventually affect everyone if they take these drugs long enough or is this just down to individual susceptibilities? The point is that I was not told of alternatives, or properly informed of the consequences of these agents. There are alternatives to drugs and there are alternatives to the medical industry: Doctors (usually) did not give us AS, and most know so little about it that they cannot help us prevent permanent skeletal damage from it.

The very fact we are discussing this diet issue again, after so many years, only means that the dissenters do not have the will or capacity to disprove diet or disprove the germ connection. The contrary scientific-looking literature does not do this at all, but only reinforces our resolve to keep the truth available for our fellow sufferers.

And the truth is plain and easily discovered, for those who wish to discover it. It can take as little as a fortnight to prove to Yourself whether there is any connection between food and AS, but there is one thing You must have: Active AS. No researcher or even physician with AS patients can figure this out on their own; it is a personal thing that must be experienced. Even a physician, or anyone else, who has AS might be able to fool themselves indefinitely, if they do not possess the desire to discover this.

For successful dieters, it is not an issue up for debate; it is life and death. For those of us who have the experience, the challenges and rhetoric are just more B.S. whether it is all dressed up in the lexicon of medical science, or more inane ramblings from the penumbra who call everything with which they disagree “pseudoscience,” but have never bothered to employ the scientific method for anything personal.

We are the nearly-lone voice offering a different way. Whether any or all the membership decides to take that way is up to them individually, but this is the focus of KickAS, the Main Forum and others are just along for the ride despite the greater activity and yes, it is nice to have validation and nice to talk to other people with AS who actually know what real pain is and have experienced some of the complications of this disease, but if it were not for NSD Forum this place would be much different than it is today.

As a former vegetarian, I was the dead-last guy who wanted to hear the truth about AS, but I had to at least test it, if only in order to save my eyesight, I had to keep at it long enough to overcome my own condition. I then made my experiences available for others to benefit as I did. And although I believe in the germ-cause and molecular mimicry as the primary mechanism in AS, medicine in general, is not my field (but quantum effects, currents, fields, and particles are; I am not a scientist but only a humble engineer).

Over the past 14 years of my temporary remission or placebo effect, I have tried to faithfully represent Professor Ebringer’s opinions and specific viewpoints in defending the working models, but only get challenged by ancient articles found again and again by gadflies Googling “AS + Klebsiella” or other similar useless things. No experience, nothing new to offer, just more of the same; it gets tedious.

I was done with it long ago, but only willing to respond for and on behalf of those who are not yet very familiar with Ebringer’s material. For them, we can have this discussion a million times because for every person turned away, there are five or six who are listening and able to reason things out for themselves. The dullards have what they have always had; so be it: “It is written!” [to quote from Lawrence of Arabia].

The topic of AS has absorbed much of my time during the previous 14 years, and I have had active correspondences with over 500 others, in addition to those with AS here at KickAS, and over 200 of these have responded to diet, over 200 did not want to try this diet as an option, but very few have had no improvement at all and I stood by and fully believe these people (very few) who have been steadfast and followed strictest NSD plus non-dairy and even other restrictions—some even beyond what I would have done, but I believe most of them and believe they really perceived no improvement. I can explain these, to some extent, but the fact is not so much that a few do not get better on the diet, but I am honestly amazed at how often it does work for people, at how few failures there are. And other people have tried other methods with some success, but everything I have witnessed to date can be fully explained by the proposed Ebringer theories.

And as I have mentioned before, a literature search, properly conducted, will link diet with AS and whether a person believes in 100% proof, the statistical bias is well beyond simple chance; the first and primary hypothesis cannot be rejected, but by Bayesian standards only grows more probable with passing years.


HEALTH,
John