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

... continued from here


i didn't claim that however i think it is true that modern science does not have very effective treatment answers for people with AS however that doesn't give anyone carte blanche to claim that their own implausible theories or treatments are equally valid. a disease pathogenesis that can accurately account for all aspects of the disease is not currently known although plenty of progess has been made in recent times and many think that it will not be too far into the future the picture will be a lot clearer. i agree with you that the current pharmaceuticals available to treat AS are not very good, do not treat the root cause of the disease and that more research should go into understanding how dietary and lifestyle factors influence the disease. there is no need to cling on for grim death to Ebringer's theories in order to justify using diet as part of a treatment strategy for AS. 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. there are plenty of people with science backgrounds (drizzit, davidP & inkyfingers spring to mind) who don't believe in all of Ebringer's theories who still do NSD.


the role of antibiotics in the treatment of chronic ReA has been thoroughly investigated. if you read HLA-B27-Associated Reactive Arthritis: Pathogenic and Clinical Considerations you would see that the authors view that "neither short-term nor long-term antibacterial treatment of enteric infection-related ReA has a place in the management of this disorder" is based on reviewing the many double blind placebo controlled trials that have been conducted with several different antibiotics involving thousands of patients with ReA. i would be interested to know why anybody should consider your knowledge of the efficacy of antibiotics in the treatment of chronic ReA to be more accurate and reliable than a meta-analysis of double blind placebo controlled trials involving thousands of patients.

but perhaps a fraction too much friction

i do agree to disagree. my beliefs are consistent with modern science because it one of the main (although not the only) source of information that i use to arrive at them. i read all of the evidence, take into consideration any biases that different information sources may have, try to be aware of any personal biases i may have, evaluate the evidence in order to arrive at an informed opinion, and then revise and re-evaluate my position as new evidence emerges.

you use a different method. you say that you did not trust Ebringer at first but "proved his hypothesis for yourself". it is my understanding (and please correct me if i am wrong as i'm not familiar with the whole story) that this was done through experiments with antibiotics (as diet was initially unsuccessful), some form of NSD as well as chelation therapy. there is no doubt that this experience would make anyone take Ebringer's theories more seriously but there are plenty of other explanations that could account for this. it does suggest that those type of interventions may be useful to some people with AS but it is certainly not proof of any underlying mechanism and implying that it is conclusive proof and then extrapolating it to all others with the disease, and even other diseases is a giant leap of faith. you say that you have been in remission for the last 14 years due to NSD + antibiotics and claim that "At this stage of my healing (14 years into NSD+antibiotics), no starches affect me anymore" and yet still follow NSD despite referring to it as "one of the most inconvenient diets possible".

i realise that in your case the forces of confirmation bias, attributional bias, and need to defend a set of narrow beliefs in order to maintain a stable internal environment of certainty and control are overwhelmingly powerful. these are fortunately very normal and common human traits and are well known to psychologists.

i think that everyone is entitled to choose whatever beliefs they please. problems only arise when those beliefs cause potential harm to others. i don't think suggesting that people experiment with LSD or NSD in any way falls into this category. this line is crossed when you start talking nonsense about things like NSD working miracles for anyone with PsA, calcium deficiency causing depression, oranges causing kidney stones, doctors and scientists are frauds etc. i am only the last in a very long line of people (most of whom have left the site in disgust) that have noticed this problem. in the infamous fasting thread colin(tiredofpain) hit the nail on the head when he pointed out that "The problem is that John isn't simply offering or suggesting advice. It is filled with insults and comes across to those who may dare to disagree as an attempt to bully them into acquiescence. For someone in a vulnerable state of mind - his posts and his bizarre opinions could be dangerous." drizzit also made an insightful observation - "there is a reason why John often gets in battles here and on the SAA board. Yet he always blames others rather than looks inward. He seems to be the one common ingredient in both places. Frankly his style of posting and overall attitude that comes across in his postings just rubs people the wrong way for a variety of reasons."

i think it would be beneficial for everyone if you cut back on the bizarre and unsubstantiated stuff and concentrate on what you are knowledgeable about, what you have significant experience in, and what will help others such as informing people of the scientific trial of LSD for AS, and the success stories of many kickAS members and others that have contacted you. if you simply did this in a polite manner then you wouldn't be repeatedly involved in misunderstandings. unfortunately you seem always revert to pushing the envelope and crossing the line and so people like me have to constantly battle to keep you in check.

in the fasting thread you said "I will make something VERY CLEAR: If anyone comes up with an effective method for eliminating AS, or even a better method than Ebringer's, we will immediately overthrow Ebringer for the new guy. And as much as I like Alan Ebringer, I would LOVE an easier answer for AS!"

Ebringer's method is to reduce Bread, Potatoes, Chips, Rice, Spaghetti, Cereals, Cakes, Biscuits and increase Red Meat, White Meat, Fish, Beans & Peas, Nuts, Vegetables & Salads, Milk, Fruit.

to be honest i don't think he has set the bar very high. i think that if the knowledge of the people on this site was pooled together that we could come up with some sort of protocol that would be better than Ebringer's protocol. it could involve using nutritional science insights into functional foods and how they affect gut bacteria and inflammatory pathways in the gut such as NF-kappaB and Cox-2. vitamin D supplementation and other vitamins that can attenuate inflammatory pathways in AS such as TLR4 expression. even add in some 'alternative' treatments that have been tested by "modern science" such as boswellia and circumin as anti-inflammatories or peppermint oil for those with IBS. and since the focus would not be limited in scope to starch restriction, other lifestyle factors could be explored such as the role of exercise on testosterone and Il-10 expression, the effect of sleep on inflammatory markers etc. and there would be no need for any hard and fast rules as we all know that everyone with AS has unique genes and a unique gut bacteria and responds to treatments differently. one can only imagine.

I'm not around as often, but when I pop in and see posts like this, it saddens me. You both are important members of the KA community and both of your perspectives are valuable and helpful to us; I enjoy reading both of your posts even though I might not agree with both of you all of the time. Let's just leave it at that and not worry about having to prove one right or not.

if we were discussing which ice cream flavour tastes the best then i would agree with you. however in the case of medical science and the pathogenesis of AS i think that it is hugely important to sort fact from fiction. with all the pseudoscience and fake gurus in the alternative medicine world it is also very important to be able to spot a 'crank'.

this article has a good outline of how to spot a crank.

"the key ingredients of a scientific crank are an inordinate attraction to an idea or hypothesis to the point that he won't abandon it in the face of overwhelming evidence coupled with the arrogance necessary to believe that he is correct and the rest of the scientific community is not. This is probably true no matter what sort of science is being abused. However, when it's medical science that leads to outright quackery, there are other issues that come into play."

"Despite what many who do not like "conventional" physicians say, the vast majority of physicians go into medicine because they want to help people. They honestly want to help their patients, and not being able to help their patients causes them intense feelings of inadequacy and disappointment. In other words, there is a strong incentive, both positive (to get that fantastic feeling we get when we realize that we've really helped a patient) and negative (to avoid that feeling of inadequacy and frustration that we get when we cannot help a patient), to find treatments that the physician perceives to help patients. There's also the ego gratification that comes from patients telling one that he's great and has helped him enormously. The problem with this desire, however noble, is that it makes physicians uniquely susceptible to pseudoscience in the form of quackery. Here's why. "From the ground," a single physician looking at a group of his or her own patients being treated with a therapeutic modality will almost always "see" that the therapy "works." The reason, of course, is the placebo effect. Without a controlled clinical trial, the placebo effect will almost always bestow upon almost any therapeutic modality at least the illusion of therapeutic efficacy, particularly at the single practitioner level. Thus, it is not surprising that homeopathy, reiki, acupuncture, and all manner of modalities that clinical trials show to be no more effective than placebo can easily appear to be effective when a single practitioner does what is in essence an uncontrolled, single-arm observational trial by treating patients with these modalities. Add to these human tendencies a significant financial incentive, and one can see how the slide into quackery can start out as an exercise in idealism, with "start out" being the operative phrase.

...They no longer try to falsify hypotheses or do trials to figure out if their remedies work. Why should they? They know they work! Instead, they cherry pick studies that support their idea and, if they do any clinical studies or science at all, it is almost universally bad science. Over time, they come to believe that they are right "because I see the evidence in my patients," as quacks like to say, forgetting utterly how easy it is to be fooled by a combination of the placebo effect, expectation, confirmation bias, and observation effect when one is a single physician treating all patients. Whether it's preexisting arrogance or a developed arrogance, these physicians will then often dismiss the "sheeple" physicians who practice evidence-based medicine as lacking the vision that they have, all the while making excuses for not doing clinical studies that would confirm or disprove the efficacy of their remedies over and above a placebo.

...I tend to consider physician-cranks to be almost a special case of scientific cranks in general. In no other field of which I'm aware can the combination of an attraction to a hypothesis and arrogance combine with an honest desire to help patients in such an incredibly toxic manner. For most scientists, the forces that seduce them into pseudoscience are largely a combination of intellect and arrogance. For physicians, care for patients and the placebo effect enter into the equation to form a perfect storm that can tempt them into even the most indefensible pseudoscience."

and just by coincidence in the comments that follow the article - "A friend of mine, Professor Alan Ebringer, has tried for years to persuade granting agencies that his hypothesis deserves funding, but he only got peanuts. His hypothesis was that MS was cause by a specific bacterial infection, acinetobacter. Now he might be right or wrong, I don't know. But the resistance in the MS field is something to behold."

turns out that the they were right to be skeptical of his ideas and deny funding as they turned out to be completely wrong. and surprise surprise they were based on his favourite hypothesis involving increased levels of antibodies to a genus of bacteria that is normally found in the gut (this time it was acinetobacter) and the process of molecular mimicry. the theory was so wacky that some scientists thought it was a hoax. despite this he somehow managed to get it published in an obscure journal and even won the 2004 gold medal from the royal society for the promotion of health for his efforts. he must be quite a character.

turns out that the they were right to be skeptical of his ideas and deny funding as they turned out to be completely wrong

I have watched a lot of nonsense posts on the forums lately but cannot let this one go. The debate on the causes of MS grew out of the variant CJD scare we had here in the UK 18 years ago. A scientific committee was set up to advise the government and its advice was that the disease may be the result of the uncontrolled replication of 'prions' (bits of protein) and which was possibly being spread by eating beef. Many beef products were banned from sale and we were advised that in the coming years there could be an epidemic, many deaths, resulting from this horrible disease. None of the predictions came to pass. The scientists who advocated the prion theory got virtually all the available research money and those like Ebringer who suggested alternative lines of research got peanuts (Ebringer argues that the causes of MS, CJD and vCJD are essentially the same). In spite of the committee backed theory getting the money and conducting a multitude of experiments they have produced no experimental evidence whatsoever to support their hypothesis and if there is resentment it is directed against its advocates. The advisory committee has been disbanded and those involved are very quiet indeed. And vCJD remains what it always was, an incredibly rare sporadic illness.

With regard to Ebringer's advocacy of diet as a therapy for AS it was the result
of research carried out with the help of patients such as myself. The practice and treatments offered at his research clinic were overseen by a peer review panel. When his research indicated a role for klebsiella he suggested the use of antibiotics but the panel would not agree because of the concern about developing antbiotic resistance. But they did not object to the subsequent use of diet. It is scurrilous to suggest that Ebringer is some kind of oddball outside the correct practice of both medicine and science.

Best KA thread ever.

Dragon and jroc can hold their own. How can people be offended and upset? This is a debate about something for at least me, makes my life suck everyday.

Anything should be fair game. Religion, Politics and Autoimmune diseases, no exceptions. These things all have such a profound impact on our lives. To "take them off the debate table" as not to offend/upset others is silly to say the least. And might I say between that and the lack of accountability; are the biggest problems in the world today.

I am going to say just a couple of things here. When I first found this site I was at the end of my rope. About to lose my job etc. The doctors with the exception of one had no solution other than years of medication with a poor prognosis. The one doctor said stop eating starch peroid. Found this place and poured over everything I could find. Went hard NSD no antibiotics. Johns no nonsense approach kept me motivated, did not offend me rather it kept pushing me forward.
I regained mobility feel better than I have in years. Move onto a new and demanding job
I not sure NSD will work for everyone but it has for me.
I like the fact that that there are many viewpoints on this site. Serious discussions lead to great things. Personal attacks and hurt feelers belong somewhere else.
ETTE.
Darrel.

So this is as much about the messenger, perhaps more so, as it is about the message, yes?

hi bilko, thanks for taking the time to explain the background of the CJD scare. sounds like some bad science on both sides. the fact remains however that BSE can be spread to humans through the consumption of contaminated meat and Ebringer's hypothesis was that "BSE is multiple sclerosis in cows and therefore it is an autoimmune disease which cannot be transmitted by the consumption of BSE affected meat. If this theory can be confirmed then the following conclusions arise ...". but it was never confirmed, his research funding was withdrawn, and if that isn't a potentially dangerous statement then i don't know what is. are you aware of any scientists other than Ebringer that still consider there to be any plausibility in the acinetobacter molecular mimicry hypothesis of BSE?

that is good to know that they had a peer review panel for Ebringer's diet trial. i don't think that the results of his LSD trial were simply due to the placebo effect. i think that it has some genuine merit and no doubt works via a real physiological mechanisms. i just don't think that klebsiella molecular mimicry is that mechanism. that is interesting that he was keen to try antibiotics as there was one study that reported promising results using moxifloxacin in the treatment of AS.

hi darrel. i'm glad you found the information that you needed from this site and had great success with NSD. you are one of John's many success stories.

i think you're right. i will try and make more of an effort to keep my discussion focused on evidence and not personalities. it is very easy to get frustrated sometimes.

i think the message is always more important than the messenger. however when the messages don't stand up to rigorous enquiry it brings the credibility of the messenger into question. if you are in a position where you have sufficient background knowledge to be able to critically evaluate the message then there is no problem. however many people here are not in that position and tend to trust the messenger so sometimes it is important to question the messenger, particularly when they repeatedly use an 'i just know i'm right' style of answer to important questions.