Thought people here might like to know that the section of SAA's website on the low starch diet changed a couple days ago. It is much more positive and open.

http://www.spondylitis.org/about/diet_lowstarch.aspx

I emailed them a week ago because I wanted to know in particular what they were referring to when the site spoke of studies that "found the diet to have little or no effect.", and had a link to an SAA seminar referring to 'rigorous' studies that showed no impact.

Well . . . no such studies exist--something Dragonslayer and others have been saying all along. After a little back and forth SAA agreed that the information on the site was inaccurate. (Thanks to jroc who helped me out hugely and supplied a withering analysis of the one diet study that SAA did produce and mistakenly took to be applicable.)

I don't know how SAA came to think that the diet had been studied after Erbringer. Quite a blunder, since they're the larget source of information for AS patients in the U.S. (e.g. Google AS and diet and that page pops up on top).

For what it's worth, I corresponded with SAA's Chris Miller, the current director of programs, who was impressively prompt and open (it was less than a week from my original email inquiring into the studies to the change in the website info). He seems pretty sympathetic to the diet. He also tells me SAA researchers are currently studying gut flora's role in AS's pathogenesis. So maybe things are truly shifting.

Still working on NASS, whose site still looks more or less like SAA's used to look: http://www.nass.co.uk/about-as/managing-my-as/diet-and-as/

Charlie

Great! Little steps in the right direction help. SAA has too much support from big pharma, so they tend to highly skew information toward big pharma products and away from alternative therapies such as NSD. The SAA forums also have a few "super" users who have made it their mission to refute alternative therapies (however, a few of them are now less adamant about it after many users have stated their positive experiences with LSD and NSD).

--Greg

Thanks for taking the initiative to do this.

And nice to see that sometimes actions do result in results.

Nice work! Great job with the advocacy/negotiation process. Good luck with NASS.

Charlie - Well done, great initiative. And well done jroc. I have had several goes at NASS and they said that they would look into it... But heard nothing more. Now with your questions, and reports, to them perhaps they might budge?

Thanks guys from ALL -

P.S. Just checked out the SAA 'Forums' site - been forever since I last did so (have often checked out other sections but very rarely the Forums). *Great discussions. Will have to go back and dig into those discussions a bit more. Sure as heck puts the NASS Forums into the back corner - the NASS Forums are a joke: boring. Pretty much dead!

Quite amazing that you managed to make a change in SAA stance, you must be quite diplomatic to get them to re-examine views that they were so stuck on for years!

That NASS link is *terrible*, #1 guideline is to base your diet on starchy foods!?! Been there, done that, paid the price!!!

Have posted to NASS this evening. Let's see if they put it up? Hope so as the new director of NASS is a pretty good egg - probably with her hands tied a smidgeon? Dunno. But, she has pushed the whole of NASS and the site forwards some.

Hope they let my posts go through...