Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group A call for evidence based recommendations.

Hey everyone, good to see the site is as active as ever.

I hate to be a bit of a fly in the ointment but here goes. There's a lot of advice up on this site and a great deal of it is useful. I am certain that all of it comes from the right place with the best intentions.

However it has occurred to me that there are some things being posted that are lacking in evidence but are being stated as outright facts by some members.

For example, there is a widespread belief on the site that AS is related to bacteria in the gut. This is likely to be true. However, antibiotics are not a treatment for AS and have never been proven effective in any significant study, yet I have seen long-standing members on this site say the exact opposite as if it were a first line treatment!

I really don't want to cause a fuss but surely the point of this forum is to give people good quality, reliable advice about their condition(s). I'm not trying to upset anyone, I don't want to single anyone out but as a community we need to be careful what we're advising.

So please, everyone, this is a call for clarity. Lets be clear about what is proven and what is speculation and try to keep from speaking in certainties until we have something to back them up with.

Thanks, hope this comes across in the right tone

Sorry, Andyhill1991:

NO!

If a person wants, they can seek out a physician's recommendations; they are SO SUCCESSFUL at treating AS!

Antibiotics and diet worked for me.
The combination works for many others with AS, albeit most whom are affiliated with this orientation understandably prefer very strict diet alone.

There IS another site doing all they can to totally ignore Ebringer's work; KickAS.org...is not that site.

I will continue to let others know exactly what has worked for me, whether all my reasons are correct or not. And I have been at this for a decade and a half (nearly 100% remission during that time), and assailed by the best of them (and the worst, also!). The years have only cemented my opinion and further steeled my resolve.

Unlike global warming, the science really is finished; just waiting for the medical guilds to catch up.

Good Luck to You in Your studies,

HEALTH,
John

Hi Andy

Unfortunately not all people are able to educated on a topic by presenting them with evidence that opposes their beliefs. I've tried but got nowhere. It used to puzzle and frustrate me but then I read a couple of excellent books on the topic which I would highly recommend:

The Unpersuadables - Will Stor
http://www.amazon.com/The-Unpersuadables-Adventures-Enemies-Science/dp/1468308181

The Believing Brain - Michael Shemer
http://www.amazon.com/Believing-Brain-Conspiracies---How-Construct-Reinforce/dp/1250008808

So, how many personal experiences did it take until the "evidence based" recommendations for VIOXX stopped? How many lives ruined while the peer reviewed studies full of cherry picked data were embraced by the FDA? And, of course, that is not the only treatment which has since been found to harm those using it even with the studies and models being approved.

I spend a lot of time on PubMed and it has taught me to be very wary of studies. the set up of many studies are so haphazard as to encourage the results desired by the funding parties of the study. But, there is still useful information available and I do not discount every study off hand.

It is rather arrogant of you to suggest that only your preprogrammed view of what is acceptable should be the only recommendations that people should make.

Remember that it is up to the individual to look into what makes sense for them. Whether they go for the cut, burn, and medicate model or an alternative mode. What works for one may or may not work for another but that shouldn't stop the person that it worked for from saying what has helped them.

Dragonslayer,

I appreciate you are trying to help people and by all means please tell people what helped you. Who knows, maybe antibiotic do work and it would be great if they do. However, seeing as evidence is fairly poor for it at the moment, maybe wording you advice "What really helped for me" as oppose to "This is the cure to AS" might be a more accurate and altogether balanced way of talking about it.

Pezami,

I appreciate studies may be wrong and there are a lot of poor motives out there. However, that doesn't mean we should give up on proving therapies and the more we can find that works the better! Saying what works for you is one thing and that's great; it gives scientists and researchers areas to look into but declaring it as an outright fact is at best misleading. Anyone should be free to try anything they really think might work for their health problems but the first step to making a good choice is getting the right evidence.

jroc

- That Michael Shermer book is fantastic but I've not head of the other one, I'll give it a read!

Andyhill,
there is no cure for AS at the moment. So no one can say there is ,be it "evidence based" or not. It can go into remission, not cured.

I use HUMIRA after checking the studies and assessing the risks - and it has been astounding how much it has helped. I, also, don't eat simple carbs (after checking what other people did who had similar symptoms to mine-I hadn't heard of AS when I started) This has helped even more than the HUMIRA. It was the only thing I could really do while I was ignored, dismissed, and treated like a hypochondriac by the medical establishment, for well over a decade. I was not diagnosed until I was 46. Even after getting the xrays and MRIs that showed inflammation and erosion destroying my SI joints to the point that I've developed a sitting disability. Why? because I'm a woman and it was understood that women didn't get AS. Oh and worse yet, I'm HLA B27 negative (The numbers quoted for HLA B27 positives are always for Caucasian males-that one gets annoying).

I've actually had an orthopedist, that I demanded a referral to a rheumy from, say that he wanted to send me to a neurologist because "rheumys don't really do anything".

I had no medical relief until I met my rheumy. Now, I have a hope for the future because she wants to know what I eat and how I live with this ailment-not just by going with the cookie cutter style of medicine promoted by the allopathic church of medicine.

Pezami,

I am aware there is no cure, I was referring to speaking of the NSD or antibiotics as if it were.

It's great that you're on Humira and isn't that evidence based medicine in action? You looked up the risks and the proven benefits and decided it was worth it - you based your decision on solid evidence.

I'm sorry you had a hard time getting diagnosed, I think nearly all of us have been there (including myself) and healthcare specialists seem fairly naive to AS in many cases, which is a shame because it is horribly under diagnosed. I admit I am an apologist for medicine as a whole but recognising AS is an area we struggle in and that does need to change. However, demonising all of medicine and medical research because medicine failed us is not the answer.

It's great your rheumatologist is so talented. Hollistic medicine is the future and it sounds like she's doing a great job.

I don't really know what else to say to you, the need for evidence for our claims is so important because otherwise the claims don't really mean anything. I hope that makes some sense.

My Arthritis Dr says there are a few articles being published in Medical Journals regarding the use of antibiotics helping in the fight against Arthritis. You have got to love opened minded Physicians.

Smed,

Yes there have, which is a great first step. However, it does depend on the arthritis and has yet to have been conclusively shown effective in AS - fingers crossed though, it'd be great if they work.

Hi Andyhill1991

I am someone who has yet to benefit from the advice on this site. I consider myself to be scientifically minded - meaning for example I understand the difference between proof and anecdote, and I believe that science (and not things like homoeopathy) is our best hope to discover effective treatments.

Yet there are a few things you need to acknowledge:

1. The gut, and the bacteria in it, is very poorly understood by medical science, and until very recently, wasn't getting the attention it deserves.
2. Some medical advances follow this pattern:
a. Eccentrics experiment on their own bodies to find something that helps for them.
b. They find something through years of dedicated trial and error - but are ridiculed by doctors.
c. Scientists take an interest in what they are doing, and sometimes find why it works (or in some cases only that it works, but not why). But new medicines are discovered in this way, and new accepted treatments are developed.

This has been the case since the first primitive man experimented with willow bark. Have you ever imagined how that came about? Willow bark does not strike me as an obvious thing to try for pain relief.
And even today pharmaceutical researchers still find new drugs by looking at traditional treatments that were invented by uneducated people.

These considerations, along with the incompetence of many doctors I have come across, make the idea that we should take what doctors say as gospel above all other forms of advice seem pretty silly.

Until such time that doctors have proper treatment for AS, I am willing to try anecdotal remedies that seem plausible to me, because my life is running out while you lot are not making progress. For me that means giving the NSD and/or antibiotics a proper try (maybe 1 year).