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

Sorry to continue this thread as the attacks between the irresistable force and the immovable object are getting quite boring but I have one question that is picking at me....

Is it possible that the NSD actually works for sufferers who have klebisella in their faeces and doesn´t work for those who don´t? Or simply there has never been a study of this nature as everybody is simply: ´Either with us or against us´?

alinus - fair point, i have gone back and edited it a bit to make it a bit less antagonistic. like fergus i find it is getting boring as there is only a certain amount of times you can explain the evidence to someone before it gets tedious. in this case what is most interesting to me is how and why people construct and hold onto strange beliefs in the face of overwhelming evidence.

if you read 'Why People Believe Weird Things: Pseudoscience, Superstition, and Other Confusions of Our Time' by Michael Shermer it goes into detail about some of these reasons and it is very interesting. research shows that highly intelligent people such as university professors are just as likely to have weird beliefs as anyone else but are less likely to be able to be convinced of it because they are more skilled at coming up with ways to defend their position. Ebringers 'popper sequences' are a classic example of this. one of the most extreme examples is harvard medical school psychiatry professor and Pulitzer prize winner John Mack. later on in his career he went off the deep end and started writing books on alien abductions. to defend his arguments he would make claims such as "If the abduction phenomenon, as I suspect, manifests itself in our physical space/time world but is not of it in a literal sense, our notions of accuracy of recall regarding what did or did not 'happen' may not apply, at least not in the literal physical sense."

"I am not in this book seeking to establish the material reality of the alien abduction phenomenon. . . rather, I am more concerned with the meaning of these experiences for the so called abductees and for humankind more generally." - John Mack, Passport to the Cosmos: Human Transformation and Alien Encounters

"In science, we are trying to get closer to the truth but in medicine, the results of our investigations should help the patient." - Alan Ebringer, Rheumatoid arthritis is caused by Proteus : the molecular mimicry theory and Karl Popper

i agree with Ebringer's philosophy about focussing on helping the patient, just not at the expense of sacrificing reality. to me these psychological aspects are the most interesting part of the discussion but if people are more interested in just the physical evidence then i'll try and keep that side of it to a minimum.

fergus - whether NSD only works for Kp+ patients has never been studied as NSD has never been studied. it is quite possible that microbiome composition affects the response to starch restriction but it is unlikely to have anything to do specifically with klebsiella.

Like others, I frankly haven't been able to read every post in this thread simply because they are so repetitive. I have, however, come up with a question that I feel bears asking, mainly:

Jroc, why are you so he**-bent on disproving everything you possibly can about everything and anything involving the NSD? Look, John will attest that he and I butted heads over the diet and the theories behind it when I first joined KA, and I don't fully subscribe to everything behind it today, but somewhere along the line I came to an important realization, which was: So what?

As in, so what if I don't fully subscribe? Or, so what if the theories behind the NSD are controversial? I had this epiphany for one reason, and that is I could not deny that the diet was really, really helping a lot of people here at KA. Not a handful, not some easily defined subset of AS sufferers, but rather a wide cross-section of people who told success story after success story here in these forums. It finally hit me that, hey, if the diet is helping this many people, then who really cares if it's controversial and possibly has shaky science behind it? Even if it is working for every person claiming success as a full-blown placebo, then SO WHAT? If that was the case, it would be a rather stunning testimonial to the power of mind over matter when it comes to illness, something that has been debated for, perhaps, centuries in the medical community. I realized I really didn't care WHY the diet was working for people, the important thing is it WAS working and people were finding drastic, sometimes full pain relief.

Certainly, I would prefer if the people using the diet would also continue with medical treatments, especially the anti-TNF drugs, so they could hedge their bets in case the diet, for whatever reason, stopped working. However, it's kind of hard to tell people who are pain-free after starting the diet that they should also be taking very powerful, sometimes dangerous, drugs purely as a "just in case" supplement. Basically, whether or not to take the drugs along with the diet is a personal decision, just as the decision to try or not try the diet is a personal decision.

But, the bottom line here is, again, why are you so driven to prove that the NSD is pseudoscience that doesn't work? Why are you so driven to take the hope that the diet offers away from people? Can't you just leave well enough alone? I think that by this time there is more than enough information on this site for people to understand the pros and cons of the diet and make an informed decision about whether to treat their own disease with meds, diet, or both, and shouldn't that really be the end of things? I know you feel you are doing a public service by warning folks away from the diet--or at least that's certainly the way I interpret your actions (and it's awfully hard to NOT interpret them that way), but I would have to respectfully disagree with you on that point.

Throw in the fact that so many of your posts on the diet are, these days, driven by personal attacks against John, and I'm afraid your entire motivation has to be called into question. Yes, it is certainly your right to keep challenging John and others who believe in the diet to defend their position, and certainly you have the right to keep posting information that you feel supports your position, but isn't it maybe time to ask yourself what good comes out of this? Ultimately, that's what I did, and once I did that, it was easy to make my peace with the role that the diet plays in treating AS. Whenever I talk to new members these days about their options when it comes to treating AS, I always include a couple sentences explaining how many here feel the NSD is a valid treatment option and that they owe it to themselves to read up on the diet so they can make up their own minds. I mention that I have personally chosen to go the anti-TNF/meds route, but I definitely no longer feel the need to badmouth the NSD simply to make my own choices feel better. Maybe it's time for you to decide if this battle of yours really does the good you think it does. I think I already know how you'll address that recommendation, but as I said, I could no longer sit by without at least making this point.

Brad

hi Brad, thanks for your thoughts and input. i'll try and clarify a few points.

i am not against NSD. i have repeteadly stated that it is the proposed mechanism by which it works that i am questioning. i am drafting a post on 'Therapeutic Diets - Context, Mechanisms & Potential' which will clear this up once and for all.

because i don't think it is a placebo. i believe that there is a genuine mechanism which if understood can provide a better understanding of the role of diet in AS, particularly for those for whom starch restriction doesn't work at all, is too inconvenient, or causes other side effects. i see dispelling the myth of the current proposed mechanism as the first step in opening peoples minds to other possibilities.

i don't think NSD is pseudoscience - it is a diet for which there is strong anecdotal evidence. the proposed mechanism of NSD - reducing klebsiella bacteria which are the cause of AS is pseudoscience.

it doesn't appear that you have read my posts thoroughly. here are a few things i have said about diet in this thread-

"there is plenty of legitimate scientific evidence that suggests that diet would be an important consideration given the involvement of gut bacteria and intestinal inflammation."

"i think that it is a shame because if a scientist with an interest in potential links between diet and AS goes back and looks at his dietary trial they will see find that it was based on an implausible hypothesis by a scientist with a controversial track record and will be unlikely to take it seriously when it may have genuine merit via other mechanisms."

"just to clarify again to ensure there are no misunderstandings. the messages that i am questioning are the mechanism of molecular mimicry involving klebsiella in AS and other diseases and why certain proponents of this hypothesis may have an unhealthy level of attachment to it. i am not questioning the message that LSD or NSD are potentially useful treatments for AS though i am questioning the mechanism by which they work."

from the failures of NSD thread -

"a no starch diet that still includes at least 30% of calories from carbohydrates is low risk"

"there is no doubt that starch restrictive diets have potential in treating AS regardless of the mechanism and it is fortunate that there is a long term clinical diet study that proves this."

"there is now overwhelming evidence that gut inflammation and the interaction of the immune system with bacteria play a key role in AS. because of this, diet is an important and powerful tool in managing the disease."


fair enough. it is John and Ebringer's klebsiella science that i am questioning, not the diet itself. John pushes my buttons because he is a pseudoscientific sasquatch who makes outrageous and unsupported claims and refuses to examine the possibility that he may be mistaken, all the while never bothering to research anything himself as he thinks he knows everything already, and then has the nerve to tell those who disagree with him that have actual evidence to support their claims that "everything they know is wrong".

fair enough. i think i also sat on the sidelines for too long before making my points about the klebsiella theory. there is only a certain amount of stuff that you can let slide before you feel like you should do something about it. it's good to try and just let stuff go sometimes but as Frank Costanza would say - "serenity now, insanity later."

Hello Jroc,
I really appreciate your comments on this forum. You are open minded and let clear thinking rather than emotion guide your arguments. The problem I suspect with this forum is that the people who hang around the starch section are mostly those who believe that they have had success with it. I imagine for those in whom it doesn't work, they simply move on. So that leaves basically a one sided forum, where people like you are a lonely (and perhaps to some, an unwelcome) voice. That is why, my personal request to the moderators is to have a sticky topic at the top which can be titled something like " Poor response stories". Only then will the forum hear more of both sides of the story, so that new visitors to this forum can make up their mind. Also, in that way, there will be less clash between people like yourself and the hard core believers. To the vast majority of people, the starch diet is a big commitment for them and their families. They deserve to see balanced arguments, and in that way, I believe that your balanced inputs are a great support for all spondylitis patients. Well done.

thanks pspondylitis


.........at least most of the time

i do think it is important that both sides of an issue get fair exposure. in many ways forums/message boards are kind of like crowds. in 'The Wisdom of Crowds' by James Surowiecki, his research showed that there were four main conditions necessary for crowds to be productive.

1) Diversity of opinion - Each person should have private information even if it's just an eccentric interpretation of the known facts.
2) Independence - People's opinions aren't determined by the opinions of those around them.
3) Decentralization - People are able to specialize and draw on local knowledge.
4) Aggregation - Some mechanism exists for turning private judgments into a collective decision.

having a section for all case reports of diet whether successful or unsuccessful would be appear to be a good method of aggregation.

I'm a firm believer in the fact that we're all wired differently and react in different ways to NSD, to NSAIDS, to biologics etc. (except for the outright scams available, of course, like homeopathy).
That's why there are warnings....."one might get this, might get that or the other thing....."

Personally, I've enjoyed this thread. jroc has been quite clear in his opinions throughout and while the scientific stuff tends to make my eyes spin round, the overall take has been quite similar to my own. The diet works for some people, but I question the claims that kleb p and molecular mimicry are the root cause of all cases of AS.

Good, honest debate, I appreciate. It helps clarify when people can be dispassionate in stating their information and opinions. Personal attacks on John, or anyone, I'm not so happy about. Frankly, if you want to get into name calling and personality besmirching, please do so privately. I don't want to hear it.

pspondylitis, your comments tell me that you don't appreciate one very important thing; those hanging out in the starch area don't just 'believe' the diet works. It has worked for them. Please don't disrespect their very real results and experience. I don't subscribe to a fully no starch diet. Don't believe it's healthy overall. But I cannot deny that many people here have had extremely good and very real results by lowering or eliminating starches. That is not belief, as in Tinkerbell; it's verified by their own lives and pain levels.

And while KA may be the only place on the net that will talk about the diet openly and freely, instead of suppressing it the way other online forums have a tendency to do, the diet is not all that we are about here. It is one treatment option among many. Debated. Hashed over. Tried. Failed in some; succeeded in others. Just like any other treatment option that is discussed in detail and ad nauseum in other areas of KA. If you don't want to hear it, or if you want another viewpoint expressed, then don't go into the no starch area of the forum, and express your viewpoint here in the main forums. If you do a search, you'll find that this topic has been debated, talked over, discussed, argued about and at one point, threatened to tear KA apart. There are a great many dissenting opinions here when it comes to the diet, believe me. However, the one thing none of us at KA can get away from is that it is right that somewhere, someone should and must have the courage to stand up and say, "This treatment can help in some patients and is worth taking a serious look at!" KA does that as no place else does. If you find that a problem with this forum, well, I don't know what to say.

Hugs,

ummmm the diet of course is no use at all............................................errrrrrrrrrrrrrrr rather like NSAIDS..............................oh and exercise...............all nonsense all of them........................nope, the only answer is:


Pole Vaulting................goodness the landings do straighten out the spine.........Hi Mig (only joking)