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

You great clot.

My sweetie says to tell you that for pole vaulting to work, you have to respect the rules. The poles have to be stacked twelve deep and you have to be drunk enough to remain still as you go over them.

Warm hugs,

Hi Brad.

I've deliberated about posting a reply to your question of jroc, I realise I probably shouldn't (for my own sanity), but I'm a bit of a sucker it seems.

I think you know the answer to "So what?" Brad, even if you've made your personal peace with the answer.

For me (I'm not going to claim to speak on behalf of anyone else)I feel that the amount of "diet as cure" information on this website is out of proportion with the rest of the information. It seems from my brief glance at the "AS and RA papers" on the side bar that it remains to heavily biased on Erbinger's research(although I haven't clicked on every link to ensure this today, but none of the titles scream to me that they're anything but diet and the theories behind it).

Furthermore, in the past it certainly has been the normal course of action that when a new person introduces themselves to KA they are inundated with diet information, so passionately and insistently, that it appears (and is often worded) in such a way that it seems to be FACT. I have also seen people who have tried NSD / LSD and haven't had results that were hope for told that they weren't careful enough, didn't try hard enough, didn't stay at it long enough, or even that it must mean that they don't have AS!!! - although I did see John mention in one of his posts in this thread that he doesn't know why NSD/LSD doesn't work from some, so maybe the tide is changing here. Regardless, when diet is treated as fact with newcomers, and when people for whom diet hasn't worked are berated this seems dangerous play to me.

I know the former owner Pete Younghusband firmly believed in NSD/LSD and he acknowledges John as helping him tame his AS, so it's not surprising that John was involved when Pete retired. I know that KA is now owned by John, so I suspect that this bias of information is here to stay. I wish it wasn't the case, I wish that all information was given equal "air time", but I can understand based on this information why it isn't.

There have been a number of contributors over the years who have tried to provide other points of view along side the diet information that newcomers receive. You yourself used to be one of them. I used to be one of them. Evelyn used to be one of them. I don't know where Evelyn has gone, although I imagine it wouldn't be too hard to speculate on this. I got tired of the stress that arguing caused me, so I (mostly) stopped. You've explained why you stopped. Luckily, some remain, and I admire their commitment and tenacity. It appears that jroc is one of them, what's the harm in that?

What's interesting I find is that many of the non-diet folk will reply to newcomers asking for advice with things like: "No one thing works for everybody, but this is what works for me" (sometime this includes some form of diet). Often times we'll even mention that "some people find that strict diet restrictions work for them", but that's not always true of our diet supporters, who sometimes trash all medical treatment, the whole of the medical profession in one fell swoop. I've seen claims that doctors won't ever recommend a diet option because it keeps them from prescribing drugs and thus encouraging the symbiotic relationship between pharmas and docs - which is utter nonsense, because doctors DO recommend diet and lifestyle for a number of conditions (type 2 diabetes, high blood pressure, high cholesterol, and Coeliac disease, to name but a few). Most non-diet converts will also acknowledge as I do, that there seems to be a connection between starch and AS, but there is some particular stumbling block that doesn't make sense to us. Interestingly, like jroc (and Inanna I believe), I don't think the theory behind HOW avoiding starch affects AS maskes sense.

For me in the past, when I've spoken out, it's been because I thought that there needed to be a counterpoint to all the diet information. I have in the past felt that it was sometimes dangerous for vulnerable newcomers. I feel that things that these debates can get heated, both sides can say things they probably wish they hadn't later, and that this has the potential to destroy KA. I've lost count of how many "Starch Wars" I've lived through on KA. The first one I saw caused me to leave KA for so long (in the early days) that I had to reregister my username! Unforunately it is these sorts of debates that are probably necessary (to provide equal balance to the information that is out there), that are the ones that still drive me away today --- the proverbial catch 22. We boast on our homepage that we have over 8000 members, but how many of those are active members Brad? Again, I just speculate, but I wonder why that is?

Hope you're keeping well, and that your spondy monster is at bay.

Respectfully yours,
J x

Dear Strutsy,

You have beautifully articulated what some of us have been trying to get across rather poorly. If a sticky topic called "Poor diet response" section is made sticky, then it would solve this whole issue. Unfortunately, the moderators / owner is so biased, that only the success stories part is made sticky, so that comments by those who the diet has not been successful gets pushed down. Why is it that the moderators fear people expressing both sides of the coin ? It is a great pity that this forum is so biased, that it doesn't encourage all sides of this diet to be discussed.

May I suggest you hang around here a few yrs. before you make pronouncements on what has, can, or is allowed to be discussed here. Welcome to the forum.
J.R.

I don't find this to be the case with the Moderators nor with John...as a matter-of-fact, John openly makes it very clear that everyone is welcome here, that everyone has a right to be here and that everyone here is free to express their opinion(s)...Personally, I have quite a bit of respect for John because I've never seen him abuse his authority, power or position(as a Moderator or as the owner of this website), in fact...the only time I've ever seen him actually flex any muscle here, it was to defend another member and the moderators, IMHO, do a wonderful job here at KA, we are fortunate to have them...

Sorry , your suggestion is not taken. The above issue is for the moderators to decide, using the tools at their disposal.

Sorry, you could not be more wrong in your assumption that the moderators are biased in the matter of NSD vs. no NSD. John is technically the owner of the site, but he is only one of a group of moderators (of which I am also one), and he is one of the less active moderators overall. John does have his very strong opinions on the matter, but the rest of the moderators are, at the very least, supportive of EVERY treatment that helps AS, and we frequently say just that. Apparently I didn't make it clear enough in my first post that I have never tried the NSD and never will--it's just not for me. However, I have now seen enough members have success with it that I no longer denigrate the diet as I used to actively do. As Strutsy said, we have gone through round after round of "Starch Wars" here at KA, and back in the day, I was one of the generals leading the non-starch troops into battle. It grew tiresome, trust me. The longer I stayed here, the more success stories I saw, so I stopped being so adamantly opposed to the diet. I am still a far cry from what you would call an NSD supporter, and that will remain true from ever. I don't spend as much time here as I used to, but when I do take the time to welcome a newcomer or answer a post about what treatment options are available, I ALWAYS list the anti-TNF drugs first, recommend them the most, and detail my own incredible success story with the drugs. Just because I also now tell people that they might want to read up on the diet and give it a try because others have had success with it hardly makes me "biased" or a blind supporter of the diet. I can also confirm that mig and the other moderators feel pretty much the same way I do--whatever works for members is a good thing, and we will always recommend that. Therefore, yes, I do object to someone trying to claim that the moderators here at KA are biased--it simply isn't true, and I strongly object to being labeled in such a way.

As for making a sticky section as you suggest, I will talk with the other moderators and we will consider it. I will add that we tend to not sticky very many things, and I tend to doubt we will sticky this because my initial reaction is that there is no need for it. This is largely due to the fact that, despite what you've said above that "only the success stories" are set up as a sticky, that simply isn't the case. My only guess here is that you are confusing the presence of a separate forum with a sticky post. In this main forum, there is no post set as a sticky containing NSD success stories. There IS an entirely separate forum dedicated to the NSD, but that is because, in the past, exactly what you seem to fear was actually happening--the pro-NSD talk was becoming so prevalent in the main AS forum that it was overwhelming all the other discussions.

Because of that, we created a separate forum for those who use and support the NSD, which immediately solved the problem. Yes, the diet is still discussed in the main forum, but that is allowed because EVERY AS treatment can be discussed in the main forum. If threads are started in the main forum that are very diet/recipe oriented, the moderators literally move those posts into the NSD forum. For posts that discuss the diet in general terms (ie, perhaps as one option compared to others), then no, we don't move them because we feel it is part of the overall AS discussion.

Likewise, there is also a separate forum called the "AS Pharmacy" that is totaly devoted to those who believe in drug treatments for AS, and there is also a separate forum discussing surgeries related to AS. Thus, the more traditional methods of treating AS are also well-covered and given their own forums. And, just as we occasionally move post from the main forum into the NSD Forum, we also occasionally move posts from the main forum into the Pharmacy forum. Again, we try to use a very broad criteria for what we allow to remain in the Main forum, but if we feel a post is so narrowly focused that it should be in one of the sub-forums, then we do move it.

I hope that clarifies some of the ways that we approach handling the NSD and pharmaceutical approaches to AS. I am confident that the bias you claim exists from all of the moderators simply does not exist, and I'm sorry you feel that it does. I would hope that after you've spent more time here at KA, you will see that this is true.

Brad

Jroc,

To use your own terminology, fair enough. You're likely right, I haven't read enough of your posts, and yes, I apparently did misunderstand that you do actually support the diet. But, I guess my main response to that is that this actually kind of proves the point I made in my original post. As I tried to read your posts in this thread, I guess I was so put off by your personal attacks and your often negative tone that I immediately decided that you were anti-diet and were intent on making your point any way you could. If I had read more of your posts, I likely would have realized where you actually did stand, but I found your posts so off-putting that I stopped reading (clearly, based on some of the other messages, others did not have that problem with your posts). If that happened to me, however, isn't it possible, even probable, that others are making the same mistake? And if that's the case, I'd call that a pretty compelling argument for toning down your posts.

Then again, a large part of me honestly doesn't care anymore. As Strutsy pointed out in another post, we've seen so many Starch War posts through the years that I am just so, so tired of the whole da** debate. Unfortunately, I do not have the luxury of just checking out on the topic because I am a KA moderator and owe it to new members to make sure they get a clear picture of what KA is all about. That job gets tougher every time one of these starch debates turns into a series of personal attacks, because such negative posts always give newcomers a bad impression of the site (I know this for a fact because I have been told this by numerous newcomers through the years.) And yes, John has been "brought up on charges" for this offense many times through the years too, so don't think you're being singled out.

Anyhow, I'm greatly regretting that I didn't stick to my original decision to stay out of this thread entirely. This is likely my last comments on the issue, unless something happens in the thread that demands my intervention (wait, actually I just left another post that I might have to respond to once, then that will be it). Just my two cents worth, and it definitely isn't worth more than that.

Brad

You're right, it is for us to decide, and we will, as I explained in my other post to you. Calling us all biased, however, isn't exactly the best way to further you're cause now, is it?

Brad

I have the right to think that the starch section is biased, and you will see the reasons in my previous posts. To have a sticky section called "No/Low Starch Diet Success Stories" is biased in my opinion, and that is based on my true feelings. If you think that you would like to moderate opinion, then that is your choice.