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

Dear John:

You registered on 24 April, 2002. Had you heard of the NSD from some other source, or been lurking for a long time prior to that? Just wondering how long you tried the NSD and whether you tested everything? If you needed help (ie it was not working), I wish you had posted in the NSD forum; that is how we learn and we want to count the failures as well as successes. I hope that you will reconsider dietary controls in the future.

Best to you,
John

Hey Cody , " A cut of the action ?" read this http://www.mercola.com/2002/apr/24/centocor.htm . What do you think ?

Bruce

Hi Peter,

John gave you some links in his first response to you that you can click on to discover this "NSD" that we are all referring to.

I too, thought it was "hocus-pokus" in the beginning, but after reading about Dr. Ebringer's research and theory, it really is logical. If you're the web research type, try typing "Molecular Mimicry" into your internet search field and read about it a little. You'll discover how a no-starch diet (NSD) effects us.

In the beginning I tried it for a couple weeks and gave up (I wanted immediate relief!). Now, after following the progress of the folks on the NSD forum, I am giving it a serious try. I am now willing to "go the long haul." I have a very disinterested rheumy, so this is really my only option for trying to really effect my health. Besides, IT HAS WORKED for folks that were really serious about sticking to it and willing to try it for an extended amount of time! Come visit us on the NSD forum and hear our successes, struggles, questions, etc... You'll never know until you try!!

Here's hoping,

Sharon

Have there been any proper clinical trials of the starch diet? If not, why not? Those would be relatively easy and inexpensive to set up, and so you'd expect that Erbringer would have done so by now. Has anyone asked him what the status is with this idea? I could see a challenge in controlling for a placebo effect, but still think it would be doable.

Dear Anon:

At the Middlesex Hospital London AS Clinic, Ebringer had 600 patients over a 20 year period and each experienced some level of remission on the diet (many were not very strict with themselves). The results were so dramatic, in fact, that a classic double-blind study could not be undertaken because it would not be medically ethical (the AS positive control group would have needlessly suffered).

Perhaps prison populations could be tested. There are probably very effective ways of inducing AS in B27 positive individuals and their diets could be rigidly controlled. As much as I hate to suggest such a horrible thing, perhaps it could be an option for a guy on death row (Ok...maybe only child molesters and rapists there!).

I will write guidelines for a double-blind study (it can actually be done with some clever methods), and a proposal will need to be made for funding such a programme. I am not restricted by medical ethics, and am satisfied that the small amount of damage done will justify the benefits to future sufferers who might then better avoid the more serious damage that drugs can cause.

TTFN,
John

Actually, I don't think it would be difficult at all to test this, and that is why I'm surprised that Ebringer has not done it.

Take 100 (say) people, and randomize them into 4 groups of 25. One group receives nothing, one gets the diet, one gets an experimental drug (remicade, say), and one gets placebo.

The treatment effect for the diet would then be the response in the diet group less the placebo.

This would control for the obvious placebo effect in that people who do not get the diet know they are not getting any possible benefit.

Non-compliance in any of the groups would be dealt with following standard procedures.

Thats about it. It is easy to test in a reasonably scientific way.

I'm not saying that the diet does not work, however, I do believe that AS is very susceptible to personal belief (witness 30% placebo effect in recent anti-TNF studies, and also people with poor prognosis are often high stress/anxiety), so it is not surprising that alot of people who go on the diet improve. And of course, with some exceptions (see a post above) we don't usually hear from people for which it does nothing.

Ebringer is a respectable scientist with interesting and creative ideas. However, if he truly wants to help people with his diet then he should have it rigorously tested and then published in a peer reviewed journal. That's the gold standard for scientific acceptance and until then it would seem that the diet should to be taken with a grain of salt (or two).

I'd be very happy if he (or someone else) would do the work and demonstrate an effect.

Anon--

According to latest poll, we actually get about 2X placebo from the NSD (>60%). That should be all the statistical significance that anyone would ever require to at least give the diet an earnest trial (or otherwise become happy). It is human nature to almost hope that the diet does not work, but to not follow through with it and then claim it did not work for you is a major disservice to others who may be suffering much more than yourself and could benefit from the regimen.

Ebringer's LSD has been published in at least two peer-reviewed journals, along with results. And, he travelled to San Antonio to deliver a free of charge 2 day lecture on AS in general and the results of his many years clinical success with the diet, specifically.

If you do not read all the appropriate journals, you might not know these things (I did not), and if you select only links to non-supportive and out-dated references you will never become aware of his work. Fortunately for many of us we had one of his patients early on, willing to promote Ebringer's methods.

The literature pro and con is out there. Anyone can look in Medline to see for themselves. Articles that support the klebsiella molecular mimicry theory are there, but so are articles that refute it. Science is NOT just about looking at the articles that support a particular controversial point of view. It is about looking at ALL the data, taking into account the appropriatenesss of study design.

One other point, the poll you took was entitled "thanksgiving poll" and the NSD had a 6/15 success rate among the small number of responders, NOT a 60% success rate. Since the numbers are so small, it would not be possible to derive statistical significance however. Note that 30% corresponds to recognized placebo response rates in a number of controlled drug studies for AS.

Edited by Evelyn on 05/06/02 06:09 PM (server time).

Hey Hawkman---now I know why my rhumey has 40 patients on Remicade and ZERO on Enbrel. I think I will mail this to his office staff.

Your poll is suggestive, however, more than anything else what is needed is peer-reviewed support. I have not found anything on medline that is peer-reviewed supporting the diet. If you can provide references, please do so, I'd like to see them. The one abstract I could find (by Ebringer) is part of a supplement, which is not peer-reviewed. That raises a further question of why it was not sent through the process later.

Again, I'm not saying the diet does not work, but I'd like to see some support from in the usual areas.

Concerning Klebsiella/microbial mimicry, although it motivates the diet, whether or not it exists is of course a separate issue from whether the diet can be shown to work.