Hi there, thank you for posting this.
I understand people's reluctance to trust any association that is sponsored primarily by pharma companies. I really do. However, this study is into the genetics, not into medications, so I don't get the reactions here. What would it hurt to take part? Regardless of the fact that the Spondy Assoc. is involved, does it not help all of us if genetic understanding of this disease is furthered?
I will not be taking part in the study. Not because I don't trust the Spondy Assoc and the pharma companies, but because I'm overstretched right now and don't trust myself to remember to do my part at this end. No point taking part in a study if you don't follow through. I will say that I had the pleasure of meeting Dr. Reveille here in Toronto when I took part in an international study on the most effective way to measure mobility in patients with AS and PsA. He seemed knowledgeable and truly bent on finding answers to this disease.
I've never visited the Spondy Assoc forums, so I don't know anything about their moderators or policies. However, I guess I'm trying to discourage people from throwing the baby out with the bathwater here. Seems to me that understanding the role of genetics in our disease is really important. If nothing else, it could help in ensuring that treatments given us are geared to us and not to our more dominant cousins in the arthritis world. Perhaps in understanding the genetic links, we may find that one link to IBS and Crohns that makes it incontrovertable that there is a dietary aspect to some cases of AS that has been discounted thusfar. If they know what to look for, they might be able to treat us more efficiently and effectively.
WindRider, like Mig I tried the link to the Swedish study and wasn't able to get through. Would it be possible for you to repost it? That study sounds interesting and I'd like to read more.
Many hugs,
