Bob the goodwin

Intro

I am a medical patient and have done heavy personal research in various areas particularly neurology, Sleep apnea, POCD, genetics, ADHD, urology, and lyme disease. I hope to help make wiki pages more complete for future patients who are facing some of the same issues. The Lyme conflict in particular is difficult because treating doctors are often reluctant to treat patients because of the ongoing controversy's. After reviewing lots of literature I am not sure who is right, and am becoming happy simply to know the facts.

If I have an agenda, it is that some of these controversy's are harmful to treating doctors and patients, and believe that Wikipedia and its value system is the right response to hot debates that effect everyone. So I only seek to have wikipedia represent the best information that exists in the medical literature and broader issues related to seeking medical care in these difficult fields. I appreciate any feedback on how to get my voice appropriate to Wikipedia.

Welcome

Hello, Bob the goodwin, and welcome to Wikipedia. Thank you for your contributions. I hope you like the place and decide to stay. If you are stuck, and looking for help, please come to the New contributors' help page, where experienced Wikipedians can answer any queries you have! Or, you can just type {{helpme}} and your question on this page, and someone will show up shortly to answer. Here are a few good links for newcomers:

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We hope you enjoy editing here and being a Wikipedian! By the way, you can sign your name on talk and vote pages using four tildes, like this: ~~~~. If you have any questions, see the help pages, add a question to the village pump or ask me on my talk page. Again, welcome! -- TRPoD aka The Red Pen of Doom 12:16, 28 December 2013 (UTC)

Content about medical information

In addition to the standard content requirements of being verifiable as having been published in a reliable source and overall representing the mainstream opinions, content about medical information is subject to higher levels of sourcing that is described in WP:MEDRES. -- TRPoD aka The Red Pen of Doom 12:16, 28 December 2013 (UTC)

Bob the goodwin, you are invited to the Teahouse

Hi Bob the goodwin! Thanks for contributing to Wikipedia. Be our guest at the Teahouse! The Teahouse is a friendly space where new editors can ask questions about contributing to Wikipedia and get help from peers and experienced editors. I hope to see you there! Nathan2055 (I'm a Teahouse host) Visit the Teahouse This message was delivered automatically by your robot friend, HostBot (talk) 20:42, 28 December 2013 (UTC)

Talkback

Hello, Bob the goodwin. You have new messages at Wikipedia:Help Desk.
Message added 23:23, 28 December 2013 (UTC). You can remove this notice at any time by removing the {{Talkback}} or {{Tb}} template.

Samwalton9 (talk) 23:23, 28 December 2013 (UTC)

Your request for guidance?

You hadnt signed in for the original post so I wasnt certain who had made the request.

There are individuals who are good at helping people understand the environment and rules here, you can find help at WP:ADOPTION or WP:MENTOR. -- TRPoD aka The Red Pen of Doom 09:39, 30 December 2013 (UTC)

Feedback

On a very quick glance User:Bob the goodwin/sandbox appears to not actually focus on the purported subject, the Organization, and instead is a WP:COATRACK upon which promotion of the "controversy" is hung. @Jytdog: is probably a better sounding board for specific feedback. -- TRPoD aka The Red Pen of Doom 21:07, 31 December 2013 (UTC)

Thanks, I will talk to jytdog about that. I was trying not to coat rack, and understand the concept of coatrack which is why I stayed off RSMED. If an organization was created because of a controversy, I should try to find examples in Wikipedia on how those organizations were handled. Still just trying to get honest information onto Wikipedia, and not doing well yet.Bob the goodwin (talk) 21:17, 31 December 2013 (UTC)

Also WP:COATRACK says the coats have to be biased. I was trying super hard to tell the story unbiased, and I need to put stronger language in the beginning on why IDSA was going after doctors licenses. Even if it were neutral is it still coat rack? If the reason an organization exists is because of a controversy, where is the coat-rack line.Bob the goodwin (talk)

Also, if the group is fringe I should not even be talking about the controversy.Bob the goodwin (talk)

This is a very ax-grind-y piece that you have written, Bob. For instance, IDSA going after doctors' licenses has nothing do with ILADS per se, as far as I can tell. Much of it duplicates what is already in the Chronic_Lyme_disease#CHRONIC section, and this kind of full-out duplication is a bad thing in Wikipedia. Jytdog (talk) 22:28, 31 December 2013 (UTC)

Thanks, I had the same thought. I really don't want to take sides, and I had not put in all the anti ILADS stuff yet, and I have not been willing to seek LLMD involvement for my own neurology issues. I am not good (yet) at thinking like a encyclopedia. But I haven't given up (yet) trying to get it right. The doctor's license thing and the anti-trust thing are central issues to anyone wanting to do casual research and central to the existence of ILADS. Both sides did bad things IMO, what is the most neutral way to put this out there? It is obvious from the ILADS membership list that the license thing was a big part of why they formed, and why they have advocated in the way they did, but I know I can't use OR. So I get I would need to find a reliable source that links that with ILADS as I did with the anti-trust issue. But that still begs the question that I seem to be doing this wrong. The honest and useful feedback I am getting is that I am way off base. ILADS is a significant minority. There is a war. Patients are being hurt. There are primary sources to prove this. If I have an axe to grind is that the internet is full of propaganda on both sides and it is all damaging. I do not want to be axy-grind-y but my frustration is showing through and that frustration is not pro ILADS nor anti IDSA, it is anti-propaganda. If I can't learn to sound neutral I won't stick around. But the chronic Lyme section is not helpful to patients, as it is incomplete about the anti-trust suit, and it refers to protests as harassment and much more. The licensing issue is inflammatory, but is why ILADS was started in the first place. I do not want to do WP wrong. But I think information like this should be in WP and be in WP neutrally, I just don't know how. Can you give any advise? Or do you think that ILADS/chronic Lyme is a fringe and fringes cause harm and so should be ignored? I can give RS on this war being very harmful to patients, but I think that has nothing to do with this page. I could try and make the chronic Lyme part of the Lyme page more neutral, but that seems a much more visible place for a newbie to start. Please tell me if my goals are inconsistent with WP or my assumptions are wrong so I can stop wasting mine and your time. It actually helps me personally to know if they are fringe (because I keep getting these hints from mainstream doctors that it is too risky for them to work with neurology patients that are 100% sero-negative and that I should be open minded), but the reliable sources seem to tell me otherwise. Even the surveys of doctors show a split in opinion. I just need to know whether to stop or to take a different approach. Thx. @Jytdog: Bob the goodwin (talk)

01:38, 1 January 2014 (UTC)

"The doctor's license thing and the anti-trust thing are ...central to the existence of ILADS." This makes no sense to me. ILADS has nothing to do with either. Please explain. Jytdog (talk) 05:36, 1 January 2014 (UTC)

Big picture

For what it is worth... I wrote to you earlier, that it is an objective fact that there is a population of people whom we know had Lyme disease and who are suffering certain maladies long afterwards, and a larger group of people who suffer similar maladies, who believe that they were infected by Borrelia but our best objective tests cannot validate that. I don't think anybody belittles that suffering or doesn't believe it matters. The part of ILADS' mission to fund more research into diagnosis and treatment of these suffering people, is on the money and is very important. The parts where they go WP:FRINGE are a) claiming that they can diagnose "chronic Lyme" with certainty when it is a judgement call; and b) recommending with such certainty long term antibiotic use (i) when there is no evidence that this is a safe and effective treatment for most patients; and crucially, ii) without requiring that doctors inform patients that the treatment is highly experimental and there is a high chance of severe side effects. (the word "consent" does not appear in their guidelines) Part a) and part b)i) is where ILADS reeks of bullshit (as I write on my userpage: "Much bullshit is generated in claims of certainty, in cases where none can be had.") and part b)ii is what has cost doctors their licenses, and I think is pretty evil to be frank. Post-Nuremberg, informed consent is a bedrock principle of experimental medicine. On top of that, people with "chronic Lyme" are suffering and have been for a long time - they are very vulnerable, and offering hope of getting better via dangerous long-term antibiotic administration - which seems to work for some but certainly not for all or even most of these patients - is cruel. I don't know what else to say. It seems that you perhaps are perhaps one of these people who suffer so terribly. We need better diagnostics and better ways to treat you and people with similar symptoms. Meeting that need is righteous. Claiming certainty where none can be had, the lack of informed consent, and offering false hope to vulnerable, suffering people, are far, far from righteous. In my view, at least. Jytdog (talk) 06:39, 1 January 2014 (UTC)

I am going to fold my effort. But continue the debate just a moment longer.

• when there is no evidence that this is a safe and effective treatment for most patients; and crucially -- I can produce numerous studies that show that long term antibiotic treatment of lyme is 60%+ effective. I can also produce numerous studies that long term antibiotic treatment is safe.
• highly experimental and there is a high chance of severe side effects -- the primary severe side effects are called Herxheimer, and they had been in use for almost 20 years until the IDSA renamed them.
• without requiring that doctors inform -- I think you know this is inflammatory, and easy to manipulate in a hearing.

I can send you the links, if you want. But I hope you see what an uphill battle this is if I was telling the truth. That being said some of those doctors were cowboys, and the organization today is doing most of the substantial work in the field.

This is the catch-22: I give you the medical research, you say it is not valid because it was dismissed by IDSA. I tell you ILADS is a substantial minority opinion, you say there is no medical research. Search for it yourself. There is a lot of solid research on chronic lyme and long term antibiotic treatment.

BTW... Seriously thanks for giving this your time. I will politely fold, unless you have more questions.

Bob.

• Sorry one other point. Where did you see 'certainty' in the ILADS guidelines? That was the thing that always made me pissed off at IDSA: their certainty that Lyme disease was cured after 30 days when so much of the literature disagreed. I do not know if I have Lyme disease or some other chronic infection, I have none of the Lyme symptoms except neurological decline and some urology symptoms. I remain in the mainstream of medicine 3000 miles from Lyme country, and it is the mainstream doctors who are telling me that this is what Lyme Borealis looks like, they are the ones telling me that late stage Lyme Borealis is not detectable in tests, and they are the ones telling me they have nothing to offer. There maybe small doctors around who will treat it, but they all look like cranks to me. The big hospitals/clinics avoid it, and only a few tell you honestly, rather than just test and refer. I have a choice to travel across the country and be hooked up to an IV line on and off for 6 months by someone who once lost his license, or I can do nothing. The more I researched the more pissed I got. You can read an article in the New Yorker about a guy who runs a 100 billion dollar real estate fund for Blackstone that had the same experience and pissed reaction as I did.

I can live with poor medical choices, but I don't like the lies. It its the war that is killing people, not the doctors. I can afford to take that option, most never even get to know. To some extent I wanted to see if I could write this on Wikipedia as a way to prove it to myself, and I couldn't apparently. People are flawed. Lies are dangerous. Seriously, research the research, the story is hiding in plain sight.

here is the IDSA position on 'informed' They also do not have that word in their guidelines: 03/13/2013 IDSA objects to a Virginia law that requires physicians to provide patients with a written notice explaining the uncertainty of test results for Lyme disease. - See more at: http://www.idsociety.org/Lyme_Policy/#sthash.kijevwuF.dpuf

And you were kind to put effort in.

Back to politely folding... Bob the goodwin (talk) 07:29, 1 January 2014 (UTC)

I would be interested in continuing to talk, if you like. Can you please send me citations for the sources that you understand show that long term antibiotic use is safe and effective in this population? 2ndary sources (reviews) would be best, of course! I appreciate your patience very much. Jytdog (talk) 14:08, 1 January 2014 (UTC)

Yes I would be glad to. I may take a break for a few days. I felt like I was doing a poor job pretending to be an editor before I learned how, and most of the criticisms of me for coatrack, etc were fair but unintended. So I need to stop feeling like I am accused of being pro-fringe. If I am ever going to be able to help I need to be able to communicate effectively in the native voice. I will pull together some short paragraphs to answer your specific questions. Thanks. Bob the goodwin

I put in a days work to get a lot of info into my sand box. I know there are lots of holes, and it will take a lot of time. See what you think of the answers I put in there.

@Jytdog: (talk) 22:22, 1 January 2014 (UTC)

The sandbox is coming along nicely. A very good move, I think, to change focus from ILADS to the broader notion of "lyme wars". I will start looking through the studies that you cite there - thanks. Quick note on Fallon - that study was on patients as follows: "Patients had well-documented Lyme disease, with at least 3 weeks of prior IV antibiotics, current positive IgG Western blot, and objective memory impairment." Says nothing about antibiotic use in patients who have no such documentable history of Lyme and i believe that the hard core dispute is over treatment of those patients. Do you agree? From what I can gather, it is ILADS recommendations concerning those patients where they go fringe. I don't know if you agree with that. Jytdog (talk) 13:07, 2 January 2014 (UTC)

I am not sure I agree. There are two issues, one is the research to prove points, and the other is treatment guidelines. The Fallon study does seem at the core of the research debate because he tried to stay 100% within the CDC rules while proving the CDC rules were wrong. If I go much beyond that I am doing OR. The IDSA position is that if you have a Erythema migrans rash or positive serology you can have 7-28 day treatment, and that is it. So the debate is two part, acute and chronic. The acute argument is not the one you make, but is sufficient to say that 90% are not detected or treated per the CDC diagnostic criteria. Most of the debate in the research is about chronic. By necessity the research must avoid the question you ask because IDSA does not accept the scenario you stated exists. I am pretty sure that neither side is recommending continued therapy past 28 days if a patient is symptom free. My memory of the ILADS guidelines is that their clinical diagnostics criteria are reasonably specific to Lyme, and I need to write out the section on Herxheimer, because I think that is where the treatment debate gets interesting, but I am looking for secondary sources. My understanding is that Herxheimer is both the bad symptom of treatment and the evidence to the LLMD of chronic spirochete infection (The other spirochete syphilis also was diagnosed this way until better tests arrived). No Herxheimer == no Lyme. So my opinion is that there is a good intent methodology, and the research seems to show 50%++ success rates, but this is a hard subject to study in depth quickly because there are so many tentacles.

"The danger of a Jarisch-Herxheimer reaction must be borne in mind with any antibiotic treatment of Lyme borreliosis, irrespective of the stage. Corticosteroids should be administered parenterally only in an emergency, depending on the severity of the reaction." GBS guidelines

I know that a lot of refs are missing, I needed to drop in an outline of the issues to flesh out. I put in OR as a placeholder to look for real evidence.

It is true that I don't give a whit about ILADS, it is the war that bugs the crap out of me. The Herxheimer section will not be kind to the ILADS group unless I am wrong about the research.

I don't know what you mean by "research to prove points" - can you please explain, concisely? I appreciate your patience; I am trying to understand what you are trying to tell me.Jytdog (talk) 00:47, 3 January 2014 (UTC)

Ugh. Yeah I was not clear at all. I was classifying 'research debates' from 'treatment debates', and each of these debates seems to be framed in the literature. So when Fallon does this study he is making a 'research' statement to help refute or support a disputed fact. That research may or may not exactly flow to treatment debates. In this case the 'research debate' was simply in response to the ISDA statement that "Post-lyme patients get no value from antibiotics, and thus there is no infection." So the study was meant to answer that question, from which a number of other questions flow. Your question was whether this proves that someone who has never been diagnosed under the CDC rules (so therefore can never be defined as post-Lyme) should get long term antibiotics is no, it does not.

It only answers the question of whether the most narrow possible definition (IDSA) of Lyme disease that fails recommended treatment (IDSA) can be treated with 3 months of antibiotics effectively. IDSA will not engage in hypotheticals until that question is answered. Given that IDSA controls research funding, that is why you have to look on the other side of the track for answers. (The other side of the track, for example does not include NEJM).

There is a primate study Embers recently which is a good 'tea leave' study, because Wormser utterly slammed the study Wormser Debunk, and yet the author was given a prime collaboration spot at their conference.(can't find link, my memory is unreliable, but I thought I saw her scheduled to be in a small closed panel in Europe with the IDSA Lyme elite.) That study came dangerously close to making the chronic-Lyme case clear cut. Embers speaks at ILADS

OK, I kind of get you.. you are very deep in this debate and I get it, that it is kind of hard to slow down and go step by step with me. Please try to go slow... thanks for your patience. Here is my perspective. Clinical studies are expensive as hell. And the science of clinical research is very very difficult - it is hard to plan an experiment so that you get results that mean something, statistically - that actually tell us something about reality. (to be really slow and careful here, there is a huge difference between the truth-value of a few anecdotes of treatment response, and the results of a well-planned, double-blinded, randomized clinical trial. The latter gives us a very strong clue about reality (not truth yet, but pretty close) while anecdotes tell us pretty much nothing) It is not only money that is at stake - doing clinical trials means testing stuff on humans, and putting patients through a trial is something you want to do carefully and only if you are going to actually learn something. When I read Fallon's study and thought about it, it seemed to me that he was trying to spend the money he had and the patients he had access to, to get the most bang for the buck that he could. The most likely subset of the "chronic Lyme" population to respond to longer-term antibiotics, would be those who had actual, verifiable Lyme infections in the past. Right? So if you are trying to spend money wisely, and have the best chance possible of showing a positive effect, you go for them first, right? If you get good results, you can probably attract resources to expand... do a bigger, or longer study, in that same population, or more daringly, expand to other subsets of the "chronic Lyme" population. But you must go stepwise! I am just talking about really basic stuff like money and credibility (which you need to get money) and how good science progresses step by step (which I know is painfully slow). I don't see how you can separate "research" from "treatment". You need research to show whether, and to what extent, treatment is safe and effective for a given population. Jytdog (talk) 03:47, 3 January 2014 (UTC)

I am sorry, it is not that I am too deep in, so much as it "seeing life through a straw" brain. Luckily it comes and goes. But you were kind to give me specific instructions. I can not know the goals of the Fallon research. I have made assumptions, which I shall spell out here, and you can challenge me. Here is a review article written by Fallon later than the study. Fallon review of 4 federally funded double blind studies. This is the statement he is fighting against: "additional prolonged antimicrobial treatment is ineffective in Post Lyme Disease Syndrome"

I have interpreted this as important for two reasons. First, Fallon is the only one of the studies done by a pro-chronic Lyme MD. Second if antimicrobial treatment were effective in Post Lyme Disease Syndrome, then there is greater weight to the argument that the disease is caused by an infection, rather than auto-immune.

You raise the question of why the study was designed the way it was. I am in over my head here. Here is a quote that might help from Fallon before the study "Dr. Fallon notes that the criteria for entry in the study are very strict. He cautions that he is not stating that patients who are "ineligible" do not have Lyme Disease. Rather, the study requires that patients who enter would be only those patients who everyone would agree have Lyme disease. Why? Mainly because the study procedures are so very expensive. The Columbia team and the National Institutes of Health wish to make sure that in four years the results of this study (whatever they are) will be believed by everyone. " Yes expensive $4.7M Grant

"Fallon, who had interviewed more than 3,000 patients for the research, wound up studying only 37, and concluded retreatment may help people with long-term cognitive impairment. The study period covered six months of therapy. [1]

I think what the previous two statements say to me is that he was given an excruciating small window to work in, and he valued believability above all else. There is probably a lot of history behind these four studies, with lobbying the NIH, etc, which I can try to find. I think he wanted to be able to say "additional prolonged antimicrobial treatment is effective in Post Treatment Lyme Disease Syndrome." Am I missing your question still?

Fallon just posted a new message on the Columbia Lyme website Fallon message, where he almost seems to be declaring victory compared to his former style of writing: "Treatment studies in animal models have definitively shown that the Borrelial spirochete is capable of persisting in the animal host – even after aggressive antibiotic therapy." and "Treatment studies in animal models have definitively shown that the Borrelial spirochete is capable of persisting in the animal host – even after aggressive antibiotic therapy." and "first in the United States to focus research specifically on the problem of chronic Lyme disease"

Thanks too for sticking with me.

I think we are just about on the same page here. What I am trying to do (badly) is show you the assumptions I am bringing to the table and how I am interpreting things, and I am trying to understand the same about you. I am still focused on understanding what you meant by "research to prove points" and your separation of treatment guidelines from research. These statements come from a place that is foreign to me. To help you understand that, I tried to explain the place where I interpret things from. And that is from a medical science perspective, which works from the bottom up. ( I feel like you might be coming from the other direction) By bottom up, what i mean is that we start from a place of ignorance - where there is a lot that we don't know, and you proceed stepwise to try to gain a foothold of knowledge and build out from there. That is how drug development works. Treatment recommendations are completely dependent on what the research shows. You cannot separate them! In this case, there are hypotheses out there, that people with chronic Lyme may benefit from long-term antibiotic therapy. But we don't know if that is true -- we are ignorant. OK, how do I show if that is true or not? It is going to cost a lot of money, and that money must be spent carefully, and step-wise, with lots of go/no go checkpoints built in. Each time I take a step and have success (a "go") that is scientific validation to take the next step, and the success on that step gives people confidence to give me money to take the next step, which is generally always more expensive. Each time I have a failure (a "no go") I have to re-evaluate something I have done, maybe do the last step over, maybe go back to a prior step and head in a different direction. New drugs that make it all the way through the drug development process are shown to be safe and effective enough for some specific use and get approved by the FDA. In the case of repurposing existing drugs for new indications (or seeing which of already approved drugs work better for a given already-approved use), it is the same process, but the outcome is not necessarily FDA approval - more often the results get embedded in a treatment recommendation guideline. And that is the case here -- for chronic Lyme and antibiotics, a successful clinical development program will show that some specific course of treatment is safe and effective in a given patient population - and only after that is achieved, should that treatment be recommended That is how it works, and that is why the IDSA is so deadly opposed to the ILADS recommendations - they are not based on solid clinical studies. They are not good medical science and from the perspective of medical science (which is our only tool to know anything about medicine!) those recommendations are incredibly irresponsible. We don't know if long term antibiotic actually helps, nor who, nor do we know how much it will hurt people. This is the gap that Fallon has tried to fill - this is why he is respected by the "mainstream" and his efforts to help are why he is respected by the chronic Lyme folks. The things you have written above, seem to me ( and I am sorry if i am wrong) to come from a place that is "top down" - I think you believe that patients should be given long-term antibiotic therapy, and it seems to me that you think about all this from the perspective of power and politics and gamesmanship that either works to enable that treatment to happen or prevents it. I think that is where you are coming from, and may be why you write things that surprise me. I might be wrong and I am sorry if I am. Jytdog (talk) 13:39, 3 January 2014 (UTC)

I can't tell you how my I am enjoying this conversation, appreciating your interest, and learning a new way to think about things. Because you asked (I appreciate you did) about motivation and approach, I will provide 1-2 paragraphs more on my experience, 1-2 paragraphs on my OR and opinion first. I am smart enough to know the difference between OR and RS. Then I will carefully go through your points and see if I can do better at bridging the gap. I do not think I am doing what you think, and I would like to debate some of your points.

I have known for four years that my severe urinary and genital pain, infection and dysfunction were similar to research related to Lyme disease. I had no interest in either side of the argument. I self treated with DMSO and tiny amounts of antibiotics with amazing success. I have an amazing employer and insurance, and have a key role, so was asked to do a deeper medical review which discovered a cancer that was in an 8 year old urology surgery. I had a major (and I still won't look at it, totally freaks me out) surgery that sent me into a mental tailspin, but not entirely the first. I have late onset Tourette's (which does not formally exist) and repeat words have tics and little executive control (for example I try to fix Wikipedia errors suddenly). I had tried extended antibiotics and the experience is brutal and somewhat effective. I can say the same thing about chemo-therapy. The LLMD world has some fringe elements, and I have gotten mainstream people to work with me cautiously, which is why I have opinions about the fear/opinion. I also had dementia and memory loss. I have not a lot of memory of it, but went to the emergency room and then refused treatment because I thought nobody believed me. The irony on that story was that I was medically correct, but presented as demented. I also took care of my mother in her last years of life dying from amyloidosis, and who had a life-time of chronic inflammatory diseases, and worked closely with Ivy league medical professors. That is enough for now on me. I provide this to help you understand motivation, but have no reservation about exposing more.

One more quick clarification, I do not want to name the people who are involved in my care, but they are some professors and definitely mainstream. I may go on extended IV antibiotic care to recover my brain. Neither they or I have fully ruled out all other causes, nor have I gotten any where near willing to face that hell. I am an extraordinarily privileged patient, and this paragraph has nothing to do with my broader feelings because almost nobody gets to the place I have reached in medical care.

My opinion and OR is that long term antibiotics are brutal and expensive which would justify the IDSA position. Most of my friends growing up were children of professors and some of them med professors at Dartmouth. I also got to know some of the newer ones at Dartmouth during research on amyloidosis, and after that at several at Harvard because of inventions I was collaborating on regarding sleep apnea. I have immense respect and awe for every single person on that list, and extend that to this crisis. Despite being more conservative than my Dartmouth/Cornell/Yale/Harvard friends, I was a bit radicalized by the bank bail-outs, and have done enough research to be able to reasonably assume regulatory capture. Lastly in my actual job I am doing some work in an area I call Informationalism, which is where the changing philosophical constructs that have happened since the start of the internet have put pressure on the Materialistic preference for fact and control. Physics and growing food are perfect areas for research based on Materialistic constructs. My area, helping people who are now facing information overload get reliable and useful information has been in direct conflict of Materialism which has typically seen information as property, and used the flow of information to incentivize outcomes. I am of the belief that medicine is much less of a science than we let ourselves believe, but I always prefer higher reliability information. I also believe that the Lyme wars are a classic example of the role of informationalism, and interestingly I am a not a victim of the wars per se, but am in a unique position to understand those victims.

My belief is that the ultimate solution for chronic lyme disease will come from three areas: Better diagnostics, Treatments that disrupt biofilms, and genetic-focused immune support. My observation is that these are areas that are getting attention from ILADS not IDSA, and that a lot of effort is spent on both sides defensively. It is also my opinion that de-legitimizing ILADS is a central component of the debate. I also see classic signs of capture while simultaneously am unwilling to believe this class of scientists could participate in capture. Please ask me for more if the previous three paragraphs do not resolve any questions on motive. I am not withholding opinion so much as trying to separate opinion, OR and RS.

Ok, now to each of your points. " "research to prove points" and your separation of treatment guidelines from research". If you start from my position that there is a war, and that the ILADS (ILADS = shorthand for all pro-chronic folks, including GBS+Columbia+Sapi+Tulane) crowd spends a percentage of its time on defensive research. This is my OR. You have helped me realize this, and I did not do a good job separating the two. I think I can translate my OR into RS by first retracting the comment that this paragraph is about. There is no longer "research to prove points." Instead I point to quotations directly from Fallon in our previous comments. See "3,000 patients for the research, wound up studying only 37" and "The Columbia team and the National Institutes of Health wish to make sure that in four years the results of this study (whatever they are) will be believed by everyone." I think it is rational to conclude without OR that believability was very important to Fallow and that he therefore used a very narrow definition of chronic Lyme.

(edit conflict -- I was responding to the above, while you wrote what is below.. which I will now go read!) thank you for sharing all this. You have been through so much, not only with your own health but with your mom's. It sounds like you have really grappled with our system of providing health care, which (IMO) is on the one hand broken beyond belief, and on the other hand populated with many people who are trying to do good in those constraints (and quite a few jerks). I stand with you 100% that "medicine is much less of a science than we let ourselves believe"; our knowledge of biology - while much deeper than it was just 20 years ago - is still really shallow and fragmentary when it comes to actual human health and disease, and there remains as much art as science in the actual practice of medicine. We still don't have good to technology with which to interrogate the human body (especially the brain); surgery remains pretty medieval, and "magic bullet" drugs are still more fantasy than reality. So yes, better diagnostics are hugely important as a starting point for almost everything, including Lyme. With all that said - especially with all that said - I am huge believer in separating about what we know is true in medicine, and what is our "best guess", and saying as much possible how reliable that guess is. I really think that is where Fallon is coming from too - he is trying to be as rigorous as he can. It is good science and yes, in the context of the "war", it is also wise. But I am dying to ask you - when you say "Materialism" and "Materialistic" what are you talking about? Ditto "informationalism"...? I want to think more about what you have written, and respond, but this stopped me. Jytdog (talk) 01:48, 4 January 2014 (UTC)

You should read about Samuel Johnson health, that is me right now. I will probably never finish the book because my mind may decline. My doctors are telling me that I should hope for Lyme because that is the only reversible dementia I might have. In which case I should assume good outcomes. I think of "Materialism" as in the 1805 take over of Harvard by the Unitarians (I am not a historian, so be careful about assuming expertise) where the form of rational thought in the US shifted to the point where slavery could be exposed as wrong on a set of constructs that were more scientific and human. The sciences world wide grew from this trend (not just the Harvard example, which was certainly an imitation of something started earlier in Europe). I have a lot of family history documented from this era, and my great grandmother was in the first few years of Radcliffe forming. Materialism if fact base, but it is also property based. The world has limited resources, and there needs to be a system to manage this. Capitalism is one form of Materialism. Communism is another. Informationalism is my own construct, and I have been trying to use language deconstruct the ontology. In my current state I will not get far, so can only project theories. It is very useful for identifying societal frictions and transformations that are occurring in plain sight. It helps me look at the Lyme wars without presuming bad intent.

You will find "bottom up" and "top down" occur in some of my writing on informationalism. I argue that there is a point when 'facts' become less reliable, and then I use the metaphor of neurons seeking for each other to find a plausible optimum. In other-words bottom-up does not find solutions, and top-down does not find agreement. So all informationalist discovery starts with the assumptions of perspective, imperfection and common goals and seeks a plausible optimum. In concrete terms, when 'facts' are 'property' rather than uncontroversial, then you need the dislodging influence of top down. This in no way undermines my secular preference for bottom up. I am by nature a materialist, not informationalist.

I spent a lot of the day yesterday reading about harvard and unitarianism, which was interesting, but ultimately didn't help me understand you better. I am still not getting this Materialist vs Informationalist thing you are posing and it seems important so if you will humor me I would like to dwell on it a bit. It seems to me that on one level you might be talking about the differences between data, information, and knowledge. But that seems a bit red-herring-y to me.. it seems to me that you might be smooshing together issues concerned with epistemology (how do we know things?), ontology (what are "things", exactly?), heuristics (how do we apply what we know? how do we make decisions?) with, for lack of a better word, eudaimonism (what is a good life - what values should we have and use?) This opens up very wide and to maybe keep this more focused, perhaps we could just discuss "informationalism". This seems to be primarily a heuristic for you - a way to try to reach optimal decisions. It seems to me that you are trying to sort through all the facts and opinions that out there (which I believe you intend to give different weights to!) as well as looking at societal structures in which those facts and opinions exist and which itself give different weight to various facts and opinions, to try to figure out what you should do, and what we should do, and what are the best strategies to get there. Is that accurate? Jytdog (talk) 19:52, 5 January 2014 (UTC)

"The most likely subset of the "chronic Lyme" population to respond to longer-term antibiotics." My opinion is the opposite. This is the least likely population to respond, and I am in the least likely population to respond to long term antibiotics. I do not have RS at hand, and if you ask I will work on this. But I think you were asking first about perspective and then we can get back to RS. It is my impression that LLMDs have a very good track record. The longer the infection, the worse the odds get. I think there is some RS on antibiotic effectiveness across critera, but am certain that polling LLMDs randomly is impossible, but again ask what you want me to find so I can keep this a part time job. This paragraph is currently all OR.

This is very confusing. Antibiotics kill bacteria. The most likely subpopulation (within the larger group with "chromic lyme") to respond to antibiotics would be those patients in whom we can prove there was a Borrelia infection. How in the world can you say it is the least likely? Jytdog (talk) 19:52, 5 January 2014 (UTC)

I anticipate your next question "why would fallon choose the worst population". I would refer you back to the 'believability' quote and the significant and often ad-hominem attacks in the literature about chronic lyme.

"Despite the alleged frequency of chronic Lyme disease, clinical trials funded by the National Institutes of Health (NIH) were hampered by a lack of patients who met evidence-based medical criteria for Lyme disease. A third trial at Columbia University had to modify its patient entry criteria in order to find enough patients to carry out the study. The reality is Lyme remains a common bacterial infection that is antibiotic-responsive, nonfatal, non-communicable, and geographically- and seasonally-limited in range. " Anti Chronic Lyme article by Edward McSweegan. Note the 'evidenced based criteria' point.

"why the IDSA is so deadly opposed" I study this question a bit as well, and find that human opinions are very hard to change once established, and the art of managing conventional wisdom is a central part of human existence. I do not believe that the IDSA is working in bad faith (maybe sometimes when my brain is delusional I do). There is a competition for scarce research dollars, and I think it is a political necessity to use personal influence to create optimal outcomes. It seems most likely that an incorrect assumption was made early by a clique that started a war. The war is the problem, not the clique. It seems likely that the IDSA would be taking a far more productive tone had it not been for the activism on the side of ILADS. But this IDSA group is made up of great men who have responsibility for escalating the war, and for allowing the best research to come from a fringe. ILADS is responsible for making the mistake of branding the IDSA as a regulatory body and agitating against it, and by allowing themselves to be guilty by association with loonies.

"New drugs that make it all the way through the drug development process are shown to be safe and effective enough for some specific use" This feels more like a useful (and usually true) statement that an actual understanding of the sausage. Drugs development processes are optimized for approval. It is a common misunderstanding to assume that regulatory approval means much more than regulatory approval. There is sample bias because of the high costs of development, so it is expected that an antibiotic would be deemed safe for a cold, but never would be economically enough to get approved for Lyme disease. This is why there are off-label rules that are both necessary and abused. Also it is the states jobs to regulate doctors. But I will grant use that your statement, though flawed, is usually true. I also believe that people work in good faith through out the process. Bias comes from economics, not prejudice.

"They are not good medical science and from the perspective of medical science (which is our only tool to know anything about medicine!) those recommendations are incredibly irresponsible." There is two statements here (only tool) and (incredibly irresponsible). I will take them one at a time. First 80% of medicine is clinical (i.e. practiced outside of objective evidence/medical science). One may have studies about the effectiveness of treatments in a narrow range of circumstances. But a physician still has to apply judgment. There is not a study of the inter-reaction of all possible drugs. There is not a study about appropriateness of particular treatments with age, sex, weight, and comorbidities. Many common medical practices are done through common sense not study. A large part of the profession is informational, not scientific. The rejection of case studies as information is a fairly new phenomenon. In the case of cancer treatments there is an incredible amount of variance in the practices across people in the profession and they share their notes with each other. That is not science, that is medicine. Medicine is not physics.

"recommendations are incredibly irresponsible" So let me give you a hypothetical. A group of doctors discover a lot of people with cancer are living miserable lives, and they discover that drinking DMSO (legally used in a very narrow set of cases, but proven safe) and observationally believe it cures 30% of them over a sample of 10,000 patients. Research will take 5 years, and is blocked by higher priorities. Is it irresponsible to keep treating? If one assumes bad faith (snake oil) it is irresponsible, but I do not assume bad faith. I do see bad actions, not bad faith. It seems the question can be broken further into three parts: 1) good faith, 2) reliability of information, 3) regulation. I am assuming #1 across the board. #2 there is an obligation to do research and share notes and quickly discover if you are wrong. #3 The states regulate doctors, not the medical societies or the federal government, and the rules support the clinical-doctor-patient model of medicine, not the proof-policy-delivery model.

"you write things that surprise me" Please highlight them. It is possible with my neurological conditions I need to revisit what I have said. This is of great help to me, and in any case I am interested in the reliable and verifiable truth.Bob the goodwin (talk) 01:35, 4 January 2014 (UTC)

Informationalism

Copied from earlier section to make it more readable.

I spent a lot of the day yesterday reading about harvard and unitarianism, which was interesting, but ultimately didn't help me understand you better. I am still not getting this Materialist vs Informationalist thing you are posing and it seems important so if you will humor me I would like to dwell on it a bit. It seems to me that on one level you might be talking about the differences between data, information, and knowledge. But that seems a bit red-herring-y to me.. it seems to me that you might be smooshing together issues concerned with epistemology (how do we know things?), ontology (what are "things", exactly?), heuristics (how do we apply what we know? how do we make decisions?) with, for lack of a better word, eudaimonism (what is a good life - what values should we have and use?) This opens up very wide and to maybe keep this more focused, perhaps we could just discuss "informationalism". This seems to be primarily a heuristic for you - a way to try to reach optimal decisions. It seems to me that you are trying to sort through all the facts and opinions that out there (which I believe you intend to give different weights to!) as well as looking at societal structures in which those facts and opinions exist and which itself give different weight to various facts and opinions, to try to figure out what you should do, and what we should do, and what are the best strategies to get there. Is that accurate? Jytdog (talk) 19:52, 5 January 2014 (UTC)

It would be unethical for me to talk about my work, but Informationalism I can talk about as if I were a hack, which in this sense I am. The theories have informed me on some other important work that I an qualified for, and are being taken seriously. I will also say that I have reviewed my 20 or so pages that I have written on the theory, and it needs a lot of work, and the actual research I want to do (and am in a particularly unique position to do) seems beyond me while I am sick. With those disclaimers done, now...

Ironically, my perspective is similar to Samuel Johnsons in that studying language is the key to studying a culture. I did not discover him until I was researching Tourette's. I was interested in Noam Chomsky linguistics when I was young, but cannot say I have read that much, but did play with deconstructing English sentences in the 70s using his constructs. I came up through information theory and data analytics. It is my observation that there is a noticeable change in the language as information availability has grown. I am not going to put 20 paragraphs in here to show how.

I went back and tried to compare the writing styles between Johnson and Melville because I believed both were primarily intellectual writers who were trying to use the styles of the day to deepen understanding. I would not recommend the exercise as I found it hard to create actionable conclusions, but it did reinforce my belief that the 18th century was still filled with 'spiritual' language constructs that were rapidly being replaced with what we are familiar with today. This is not the basis of informationalism, but informs my opinion that we still retain a lot of the 18th century constructs that are repackaged and sit side-by-side with more modern materialistic constructs. When I add the newly forming informationalist constructs I see three language paradigms sitting amongst each other. I emphasize, I am observing (perhaps with imprecision and bias) the language, not defining what 'spritualism', 'materialism', or 'informationalism' actually mean to anyone. So please assume my use of the three words is neutral.

When I look around our modern language, I will say that spiritualist language is used to express compassion, loyalty, belonging, responsibility, ethics, destiny, sense of self. Materialist language is used for almost everything else. I also have a theory (which is not mine, but I don't know who to ascribe it to) that most human collaboration is done within the constructs of language. In other words, language is the medium of negotiation, so all cultural, institutional and collaborative efforts must be framed in the context of contemporary language. I further believe that most (70% ?) of people are primarily 'language' thinkers. They can be found as the people who have an 'S' in the Meyers briggs personality profile. They would also be called 'linear thinkers'. These are the people who build and maintain our civilization. You can also find linguistic differences between the two groups.

So now enters informationalism. What happens when 20th century knowledge is exposed to 21st century information? It is explosive and fascinating. Generational influence is about 30 years, so we are seeing the first round of acceptance already, and the 1805 example shows what happened in 2 generations to the civil war.

I will posit two expressions which I think are examples of the Copernicus of the 21st century: 'privacy' and 'anti-science'. Human existence has never known privacy, it is a materialist (language not money) myth of property. 'science' is not a physical thing. 'god' is not a physical thing. You can no more stand at the gates and defend science than you can stand at the gates and defend god.

I can go much deeper. But I will say that informationalism is observation based, and the language is absorbing the language of statistics in daily use. Remember the 20th century "lies, damn lies, and statistics"? Todays language is more familiar with context, correlation, causality, perspective, inaccuracy, multisystemic, probabilistic, optimum, bias, feedback, incomplete information, etc.

The cultural ramifications comes from conflict of interest. That is, after all, why we have society in the first place. More information can allow for more sophisticate solutions, and therefore Informationalism will eventually win wherever it creates advantage (which is less than 40%(?) of society). But it takes generations to sort it all out, and the new negotiations show up in the language. Spiritualism used entitlement, materialism used ownership. Spiritualism used truth, materialism used fact. What does the language of informationalism show us?

Informationalism weakest link is that it is observational and observations can conflict, so it does not seem to have truth and fact. But it does seem to "observe" truth and fact, and seems willing to observe the value of truth and fact. There is an observation that incarcerating violent sociopaths improves the society for the rest of us.

It is the distrust of ownership of fact and truth that is most disturbing to some. "Shall we repeal Newtons laws?" In the concept of the Lyme wars, I try to look at this as 20th century leaders with good intent of the materialist mind-set trying to shape fact and ownership for the benefit of the world. Lesser men (Burrascano is no Steele, Fallen is no Auersomething) used informationalism and exposed aspects of materialism as manipulative which undermined the assertion of fact that is central to materialism. Physics and growing food are perfectly materialistic fields. Medicine is not. Many other areas are not. I see many many more dominoes yet to fall far beyond the Lyme wars.

I sure hope I am doing better with this explanation. It is a radical observation, I do not have much research done, and I have a broken brain.

Oh, and I forgot to mention, that Wikipedia is a gorgeous experiment in informationalism, and I bet I draw almost exactly the opposite conclusions about it than you might expect. But I would like to have more time before I write about it.

thank you for taking all this time and writing all that! however i still don't understand what you mean. Could you maybe just provide me a kind of "dictionary definition"? "Informationalism is..."Jytdog (talk) 23:14, 5 January 2014 (UTC)

You are helping me so much to be precise. I don't think the following is very good. I am comfortable with what I see in the language. I am less certain in how to write about it.

ma·te·ri·al·ism [muh-teer-ee-uh-liz-uhm] the philosophical theory that regards matter and its motions as constituting the universe, and all phenomena, including those of mind, as due to material agencies.

informationalism the philosophical theory (specific to early 21st century American linguistic observation) that regards agents. their memory, observations and conclusions and inter-agent communications as constituting the universe, and all phenomena, including those of the mind, as due to informational agencies.

Informationalism belongs to the class of pluralist ontology. It believes only that something ‘is’ only what is perceived by an observer. It believes that perception prevents monism, because perception is a form of communication which first requires a pre-existing (and thus separate) ontology, such as materialism or spiritualism. Informationalism rejects the monism of materialism, perceives that while materialism may have simply rebranded spiritualism, it is still relevant and necessary today. Any other ontology that is a useful vessel for Informationalism is equally valid. Informationalism seeks collaboration between humans, and thus prefers any popular ideology.

Thank you!! It is now pretty clear to me what you are trying to capture with that term. When I was in college I had a life-changing experience (trivial in reality but deeply affected me). I was walking along a hedge, and just out of the corner of my, as I was passing, a squirrel leaped. Trivial. But what struck me, was that for me, if the squirrel hadn't leapt at that instant so I noticed it, it would not have existed for me. To a great extent, reality is what we perceive. (where that went, is a realization that life is made of choices, and a good life is created by making good choices. To the extent we want to make good choices, we have to remember to really open our eyes to see what choices are available to us... so the more aware you are, the better). Now that only goes so far. If I am unaware of a cancer growing in my lungs it is still going to kill me. If i walk mindlessly into the middle of the street without looking, i can still get run over by that car i didn't see. So a big part (for me) of being aware, is being aware of facts (materialism). (this fits into the messages of "On Bullshit" and "On Truth"). And nothing gets done without collaboration, and collaboration relies on communication, on sharing a vision and a story. So yes putting your story out there (framing) and really selling it, is really important. Power lies in great communication. The only really key thing missing here is values. What is important - what goals do I have; what qualities am I trying to maximize? As Martin Luther said, "Reason is a whore." You start with assumptions and you have goals, and reason can pretty much reliably get you from any A and B you choose. Values matter. To the extent that your informationalism doesn't acknowledge and incorporate material facts (the cancer or car that kills you whether you pay attention to it or not) and forgets to interrogate values, it is an incomplete construct... but I think I hear you. Do you think I do? Jytdog (talk) 23:54, 5 January 2014 (UTC)

YOU JUST REACED MY AHA MOMENT. Informationalism DOES recognize values and materialism. Informationalism DEPENDS on spiritualism and materialism, it has no frame of reference without them. You may not observe you have cancer, but you do observe opinions that others have about cancer. You observe them through language. You observe them through materialism language. But then you decide, and have other discussions that are informationalist. What information correlates with my experience? How do I weigh this? How do I negotiate with my ethical beliefs and family ties?

Infomationalism is radical because it is not monism.

not sure what you mean by "monism" (sorry)  :) 00:26, 6 January 2014 (UTC)

monism means that there is only one construct that can be used in discussions/philosophies. "If is not scientifically proven it is not fact." for example.

pluralism informationalism weak example: There is no proof that legalized abortion is a form of eugenics, but is ethically wrong, but I feel I need to do it to live a full life.

Also informationalism moves the focus back to the human, (or spirit) while materialism was a collectivist view.

I think, that your "monism" is kind of a strawman. science can only address some questions (questions that can be tested with some kind of replicable experiment that involves measuring something); science has nothing to say about whether God exists or what values i should have. People make mistakes all the time, trying to use scientific methods, or the products of science, to address non-scientific issues, and vice versa. Sloppiness and invalid arguments do not, however, invalidate the authority of science in scientific subject matter. And there is a sociology of science -- we know that scientific method is practiced by humans and that the theories we build as we interpret experimental results are always subject to change, and that the dominance of one theory over another is subject to irrational forces. None of that is surprising or revolutionary to say. And when it comes to medicine - to discovering new treatments and diagnostics and getting them put into practice... people in the field (like me - and I think perhaps like you some!) know that while you need solid science, there are many MANY other factors involved in successfully getting new medical products to market and widely disseminated, and that it is even more complicated, and long and arduous, to try to change clinical practice when there is not some new product being marketed. In medicine it is never just about science, but you ignore science to your great peril. That is true of medical innovators as well as everyday people. Jytdog (talk) 18:10, 7 January 2014 (UTC)

Here is an example of future informationalist trends: 16-20 year old girls in a region of upstate new York had sudden onset tic disorders. materialism does not stand a chance at quickly reaching conclusions. Informationalism will drive action despite opposition. 15 girls with late onset tics

With regard to your two entries above, I allowed myself to think I understood you too soon. In your discussion about cancer (let's say lung cancer), you either have lung cancer or you don't. We have imaging technologies that we can use to see it. If you notice some symptoms and go to a doctor who orders a CT scan, it will be detected. If you don't go to the doctor, the cancer is still there. It doesn't matter what anybody's opinions about it are. So I don't understand what you meant when you said "You may not observe you have cancer, but you do observe opinions that others have about cancer." Jytdog (talk) 13:45, 6 January 2014 (UTC)

I think a lot of our topic threads got tangled together, but I think we agree. On the 'observe' side let me make a simpler example. "You can't observe that you will get cancer in the future, but you can observe that a lot of people seemed to think it is a big risk and precautions are warranted." The comment I was making was in response to yours: "If I am unaware of a cancer growing in my lungs it is still going to kill me.". I was making the point that materialism and spiritualism are still the core (or were the starting point). So materialism will tell us best practices to avoid cancer. These get transmitted to us media and parents and schools. That part is not new. What is new is how younger people and the language in general is formalizing this, maybe not in cancer per se, but there is much different way that people talk. There is more qualification and nuance. To me this is not about a fad, it is about an evolving culture and an evolving was to collaborate and negotiate with life.

Retract the above paragraph. I think you meant your question differently. I don't think Informationalism has any problem with saying "I observe that my doctor is telling me that a cancer has been imaged, and the my experience is that imaging is accurate, and cancer is dangerous." While that sentence is easy to translate to "I have cancer", and you and I would do that, it is no less powerful to let the fact be implicit in a bunch of partials. "Went to doctor", "freaked me out." "Picture of my gut with big blob", "mastatesized hemocroidatic stage II he called it", "looked it up on the web", "Lots of sick and sad people on the web", "good survival if caught early" "often misdiagnosed." I think I have screwed up the example, because I don't mean that informationalism is about twitter feeds. I am saying that the English language is changing at a rate faster than 1750-1850, and maybe as fast as the Normandy invasion. In 1945 it would have been "Got cancer. Doctor said I need surgery next week. Has to run some tests first to be sure."

I predict the society will sort it out something along the lines of 40% informationalist, 30% materialist, 30% spiritualist. I think the spiritualist language is already there, it just has gone into disrepair and has been rebranded, and so will be easy to revert. We may not go back to "god bless", but I am certain we will find something warmer than "good bye". Gold, land, atoms, engineering, production, science and mathematics have perfectly good language. So does accounting and wealth and debt and taxes. I am pretty sure that medicine will move away from materialism and I also think government will as well. Laws don't work very well. We don't want to send the wrong people away for life, we just want a civil society. Information allows nuance. The ideas can be mixed together in a single sentence. " (A) It is inhumane and lacks a respect for the dignity of each man not to treat each patient with (B) whatever medicines are available given the best judgment of a physician, a full appraisal of medical data and symptoms and the informed consent of the patient, as it has been (C) proven that policies based on science and consistency produce worse medical outcomes and distort incentives away from the patient. A=Spiritual, B=informational, C=materialistic. I don't know where this is going, but I think it will be very much richer with each generation. I think we will also have a much higher percentage of "unattached" working age adults following "spiritual goals" such as writing poetry for years at a time, and maybe lifetimes. That has been the norm in history, it is not true mostly in the age of materialism.

I need to thank you for something. It might seem strange, but with some of my challenges it is hard to interact with people in person because of being self conscious, but also because the physical movement is painful and can only be stopped with intense focus in a screen. Somehow reading and writing is much more comfortable and you became a social bridge for a few days. I went to work today and participated significantly for the first time in many months. Perhaps coincidence, but I appreciate your interest and inquiry. I hope I didn't get too incoherent and scattered along the way.

very happy that you had a productive day! if i had some part in that, that is wonderful, and you are most welcome. As for the rest of what you wrote, some quick thoughts:

• about this " I think we will also have a much higher percentage of "unattached" working age adults following "spiritual goals" such as writing poetry for years at a time, and maybe lifetimes. That has been the norm in history, it is not true mostly in the age of materialism. " From my perspective, this is hogwash. If you look at most of human history, and most of the actual people who have done the actual living and working and reproducing and dying, most people have lived at subsistence level and did not have the luxury of pursuing goals like writing poetry. There have been places and times where you had social structures like that of Europe from say 1600-1900 where a sliver of the people were aristocrats who had accumulated enough wealth and power that the few among them who were so inclined could pursue a life of writing or "amateur" scientific inquiry and not have to worry about money. Darwin was a member of the landed gentry who spent whole afternoons staring at plants and watching them follow the sun or in the case of vines, watching them grow and seek grasping points. Literally, watching the grass grow. Not the norm. Thomas Jefferson was a guy like that too. We may get something like again if the world of Star Trek ever actually comes true, which would require a) we develop super abundant and super cheap energy and b) the economic and political revolutions that cheap and abundant energy get worked out for the good; imagine a world where every house has a "replicator"! Nobody has to work. People can pursue whatever interests them. So crazy. So sci-fi. Jytdog (talk) 18:10, 7 January 2014 (UTC)

I agree with your statement during the period of serfdom and in the region of serfdom. I also agree there was a lot of subsistence for all of time. Subsistence is not inconsistent with being independent and having time to explore, even within a tiny clan. I big part of the human experience is exploration. I argue that our general conformity is an extension of medievalism, not in contrast. I do not think that stone age people wrote poetry, Their independent inquiries might have involved just having a relationship with a stream, I don't know. If I am still wrong I am open to your comments, but I think I just poorly explained.

Your argument about sci-fi is a common rhetorical false equivalence. It is that rhetoric which limits what we allow ourselves to envision and create. I do not build replicators, but am constantly being accused of professional idealism and professional future fantasy. But I did successfully integrate video and computers together in the 1980s and built a business in research labs, networking test equipment and military trainers. People would say, "I see, you want to make a Dick Tracy watch." They were right, but did not mean it as a compliment. So I am particularly sensitive to that class of false equivalence. But I am willing to give you some graphical trends and physical capabilities that I am comfortable with that most would refer to as futurism.Bob the goodwin (talk) 22:50, 7 January 2014 (UTC)

it is a great thing to envision the future and reach for it! the material substrate (the technology) will get there eventually... hopefully there are visions to teach us how to use it.Jytdog (talk) 04:54, 9 January 2014 (UTC)

Money is materialism concept. I could give you scenarios where money will play an evolving role, as it always has. This is the area where I am least willing to write Science fiction because every scenario will seem to expose that I am a communist, or a fascist, or an anarchist, or a wanna-be god, or something. I want to be an observer, and an inventor. I don't want to push my agenda, and in any case I am so uniquely capable of taking every side of every argument I would be hard pressed to agree with my self on any agenda. But I have a standard agenda I usually live by personally which is quite inconsistent with my findings on informationalist changes in our culture.Bob the goodwin (talk) 22:50, 7 January 2014 (UTC)

Bob the goodwin (talk)

• "(C) proven that policies based on science and consistency produce worse medical outcomes and distort incentives away from the patient." is really surprising (flagging this since you asked about it earlier) Are you aware of the field of Evidence-based medicine? This statement is really fringe-y, my friend. Jytdog (talk) 18:10, 7 January 2014 (UTC)

You can see the trap I keep falling into. I don't believe that statement either, I was trying to construct a sentence that showed that todays informationalist language is not monist, and that a single sentence can have all three constructs. Although I was amused that you took the materialist side right away. I agree with that side, but was still amused.Bob the goodwin (talk) 22:51, 7 January 2014 (UTC)

:) but at the same time, if informationalism really has materialism as a foundation, it cannot actually contradict reality can it? (this is what i was driving at, when i wrote that we can talk, or not talk, about that car going the street all day, but if i step out in front it, it is going to kill me. period. unless that is you are reaching toward some kind of Richard Back Illusions kind of world. Jytdog (talk) 04:54, 9 January 2014 (UTC)

• as i wrote above, i think the practice of medicine is, and has always been "informationalist." i don't understand what you believe is new or emerging in this regard. medicine has always been as much of an art as a science. it is very true that the science part has gotten much stronger in the past say 20 years, but there is still a huge need for a doctor's judgement. the IDSA guidelines are the product of judgement. they are based on science, but the guidelines themselves are not science. Jytdog (talk) 18:10, 7 January 2014 (UTC)

There is a difference between an 'art' and 'informationalist' Even as an 'art' is was a trade. My parents might say "And so you are a doctor now?" And the methodologies of the art were drive to 'facts' as much as they could. Early materialism had a lot of 'art' that was slowly transformed, such as the modern idea of the science of education. Materialism (in language and culture, I mean the philosophy of how we think and decide) tries to find homeostasis through 'fact' and 'control'. That is not inconsistent with being an art. But at some point in 1980's medicine a doctor decided, informed and acted, and did so in clearly delineated ways. Informationalist medicine at its worst might be what we find on the internet today in quack-watch. At its other equally absurd extreme it would be every person with a built in health monitoring chip with all data public about every person. A person seeking healthcare would simply discover the provider with the best metrics, and nobody would control anything. I have to be careful here I AM NOT SAYING that informationalism is anarchy. I am saying that information undermines control and fact, and that in some cases informationalism with improve systems.Bob the goodwin (talk) 22:51, 7 January 2014 (UTC)

I am really confused here. my wife went through some major abdominal surgery a couple of years ago that led to her being in the hospital over a month due to complications. the surgeon in charge - a really experienced and well-trained doctor, talked constantly about just trying to manage things that arose so that her body could heal itself. he was absolutely not a hippy or new agey guy. but he was acutely aware of the limits of what he could do as a surgeon, and what any medicine could do. the judgement was whether to intervene, and if so how intensively, at various points in her roller-coaster journey. that is mainstream medicine. and i believe it has been that way a long long time. it was probably even more so that way in the past (say just twenty years ago) when we had poor-er technology and knowledge. i think the "controlling doctor" is an old patient-facing myth.. i don't think it ever matched the reality of the doctor confronting the body of a patient. Jytdog (talk) 04:54, 9 January 2014 (UTC)

Then how do we explain that 50 doctors were investigated for practicing medicine in a way that had been accepted for much of the previous 20 years? Doctors always gave antibiotics until the infection went away. Different pathogens have different lives. I agree that doctors have discretion, especially surgeons in hospitals. But I think the move towards guidelines and repercussion are unmistakable in the Lyme wars. And may be a necessary trend to contain costs of treating chronic diseases in general (which your wife may not have had).Bob the goodwin (talk) 04:22, 10 January 2014 (UTC)

• I am sure that a patient who was diagnosed with cancer in 1942 felt many of the things that you ascribe to a patient today, and articulated them to his friends and family (used language).. except for the web/internet part of it. But surely was aware of other people's experiences. Back then I don't ~think~ (but am not sure!) that patients were as suspicious of their doctors and of authority in general (we have been through such an erosion of trust in institutions since the 1960s) and they didn't have access to as much textual content (much of it complete bullshit, some of it interesting anecdotes, some good emotional support!) , as people do today. Those are the biggest differences from the patient side, I think Jytdog (talk) 18:10, 7 January 2014 (UTC)

I read my family history in quite detail and have letters, etc. There was good knowledge, but for lack of a better word there was "community and family conventional wisdom." That I see less evidence of today. I think what is most interesting is that the ontology has changed. We think of the Scopes Monkey trial all wrong. In 1900 an Animal wasn't part of some hierarchy of biological forms. There were people, work animals, food, and critters. So "thinking" changed, rather than people got "smarter". Yes the peak of materialism was when people trusted their institutions, but I think it is more subtle than combining the 60's and the 90's into a single phenomenon. There was far less trust in institutions in the 1910s than there is now. I will dig for the graph I saw of institutional trust over time. I think it was 2X what it is right now. Bob the goodwin (talk) 22:51, 7 January 2014 (UTC)

nice. thanks. i would be interested in seeing that graph! Jytdog (talk) 04:54, 9 January 2014 (UTC)

On your point of "Some of it bullshit". 1945 did not yet have antibiotics, but they only recently had sanitation, quality food distribution, low infant mortality and far fewer accident related deaths than their ancestors, which were by far the three largest health accomplishments in 300 years. So I think they got their priorities pretty good.Bob the goodwin (talk) 22:51, 7 January 2014 (UTC)

all these things you mention are very materialist gains! Jytdog (talk) 04:54, 9 January 2014 (UTC)

we are kind of off track here.. i am still (!) trying to get my head around what this construct of "informationalism" means to you. Related to that are questions of whether you think this is some kind of paradigm that we (or some of us) are living in, or if it something you see coming. The reason I wanted to get my head around it, was that it seems to be a core concept to you and I have wanted to understand you better so that we can work on content more efficiently. And so the final, utilitarian question, is the following: does content that arises from an "informationalist" perspective have a place in Wikipedia? "informationalism" seems to be a kind of epistemology as well as ontology - there is a notion that there is a strong subjective component to what any of us sees as reality (informed by our values/spirituality as well as just age-old subjectivity); a social component to that as well (our reality is shaped by the culture or language-world in which we live); and of course the material component. But even the material component is not immediate accessible to any of us - we think and feel about that through the veil of culture and language. yes? And since "reality" as far as we can touch it is composed that way, the way we come to know it is through language and culture. something like that. i hope i have that about right now. several times you have said you see this as something new, and in some of my remarks above i tried to make the point that a) i think this is pretty close to way i see people knowing and learning (which may be getting in the way of me actually understanding you) and b) i think people have pretty much always operated this way.... i don't see much that is new here. I have this notion that you see this as something new, and emerging a lot from out access to the internet.... hm. i am missing something. Jytdog (talk) 16:26, 9 January 2014 (UTC)

Still having fun?Bob the goodwin (talk) 22:51, 7 January 2014 (UTC)

Is Informationalism really something new, and does it have a place in Wikipedia

we are kind of off track here.. i am still (!) trying to get my head around what this construct of "informationalism" means to you. Related to that are questions of whether you think this is some kind of paradigm that we (or some of us) are living in, or if it something you see coming. The reason I wanted to get my head around it, was that it seems to be a core concept to you and I have wanted to understand you better so that we can work on content more efficiently. And so the final, utilitarian question, is the following: does content that arises from an "informationalist" perspective have a place in Wikipedia? "informationalism" seems to be a kind of epistemology as well as ontology - there is a notion that there is a strong subjective component to what any of us sees as reality (informed by our values/spirituality as well as just age-old subjectivity); a social component to that as well (our reality is shaped by the culture or language-world in which we live); and of course the material component. But even the material component is not immediate accessible to any of us - we think and feel about that through the veil of culture and language. yes? And since "reality" as far as we can touch it is composed that way, the way we come to know it is through language and culture. something like that. i hope i have that about right now. several times you have said you see this as something new, and in some of my remarks above i tried to make the point that a) i think this is pretty close to way i see people knowing and learning (which may be getting in the way of me actually understanding you) and b) i think people have pretty much always operated this way.... i don't see much that is new here. I have this notion that you see this as something new, and emerging a lot from out access to the internet.... hm. i am missing something. Jytdog (talk) 16:26, 9 January 2014 (UTC)

Thanks for your very good and refocused question. To recap I said that I had a theory that had come from some research that I cannot share ethically because of my employer work, and that the real research might never occur because of my health problems. So I stated it as a theory. I also stated that the theory was an observation, not a personal belief, and that I though I personally represented the previous generation mode of materialism. I reinterpret your question more broadly is: Isn't what Bob describes as Informationalism exactly the same thing as Materialism and Bob is simply misinterpreting new symptoms as a new disease. And second, is Bob really saying that we should lower the standards of proof. I took liberties, because I too want to get to the bottom of this, and sometimes taking liberties and getting called out is a quicker way to get to the point.Bob the goodwin (talk) 21:43, 9 January 2014 (UTC)

I agree with the epistemology point, that Informationalism allows for all points of view to exist simultaneously, but I think the language is already sorting out the proper heuristics. For example I don't see the language saying that "Newton's laws are immoral." It is accepted that Newton's laws are materialistic and are extremely useful and respected for the value they bring. Subjectivity is a materialistic word for that means non-materialistic. Yet Materialists somehow create facts from consensus (global warming?). So the word in itself is mischief. But is useful when studying Newton (It doesn't feel like we are moving fast!)Bob the goodwin (talk) 21:48, 9 January 2014 (UTC)

The last point is that people are persuaded by 'subjective' and vignette. Materialism fights back. They often win. Sometimes they are wrong. We both want the right answer to win whether it comes from Materialism or not. I will put up a link later on something very subjective in my initial argument. I challenge you not to be influenced by it. I challenge you to tell me why it should not be influential. And then I ask you to tell me if this could have been influential in the pre-informationalist era.Bob the goodwin (talk) 21:54, 9 January 2014 (UTC)

on youtube there is a girl: rodeocowgirl131. Watch her stuff from the beginning and chronologically, don't skip to the end. This is pure and unadulteraded and unmoderated information. It also has high informative value.Bob the goodwin (talk) 21:57, 9 January 2014 (UTC)

Is this the link you mention above? Jytdog (talk) 00:19, 10 January 2014 (UTC)

It is a related link, but tries to highlight the informationalism of a single datum, to see if I can at least get you to understand my point, if not agree. I was rushed earlier, so will do a better job now. cowgirl video #1. This is an experiment I am suggesting. I was hoping that it would make it easier to see the evidence I am seeing in the 'English language' that you questioned might be a new symptom, rather than a new disease. Is Informationalism really just a new vocabulary for pre-existing thought processes? It is my bias (which is why your question seems fair) to believe that rapid changes in language represent rapid changes in thinking. So I may have incorrectly assumed a correlation. In any case it is hardly black and white. Arithmetic was practiced by a minority for a century before it began its integration with language. The experiment that I hope you have time for, is a two year diary of one girls experience with a set of symptoms and a set of diagnosis. It is at most information, maybe only data. There is selection bias, there is no double blind, There is no context, no hypothesis. But there is a visual diary. I think that even hard hearted scientists like you and I will find this compelling. We may not be willing to overthrow science, but it probably creates suspicion. If you can watch this an not be impacted I would be surprised. That in itself is not my point. That may still be part of materialism. Except that in the olden days this never happened. Now it happens all the time. And that is changing the way we think and the language we use. I am not (yet) trying to prove the theory (I don't think you asked me too), I think you asked me to explain it enough detail so that you could understand why I had that theory. I can't supply some of the data I have, but this is the kind of example that has caused me to rethink a number of my beliefs about how we collaborate, how we decide and how we think.

If a critical mass of people forms an opinion based on information rather than evidence, does this help or hurt them? Which is easier to manipulate? Which is more likely to be right? As a researcher and observer I don't have to prove or explain any answers, but they are easy enough to observe. My opinion (I have no data) is that 'Evidence' is falling in perceived value, primarily because rodeo girl is demonstrably not manipulated by an agenda, and there is increasing distrust in the institutions that declare which things are facts. Young people like this new dynamic. So they soak up information rather than wisdom. But it is not just young people, I see it in other demographics (middle class suburban house wives are moving almost as fast as young people). I am stretching the reliability of my data, but you get my point.

If I am smart enough to figure out how to communicate this idea, I can then show you how subversive it is, and what the backlash looks like. Until then, my arguments look like a straw man.Bob the goodwin (talk) 04:14, 10 January 2014 (UTC)

When we come to agreement on 'what' it is, then I would enjoy the conversation 'should' we allow it to influence?

OK, I watched them. first -- some random impressions. i gotta say that video is a very inefficient way to communicate. argh. seems like a sweet girl afflicted with something terrible for sure. the videos taken by her mom of her symptoms at worst, were hard to watch for sure. terrible. so she had these unexplainable neurological symptoms; nothing helped until she found Lyme doctors, went on long-term antibiotics, and now seems all better. So crazy to see her at the end compared to the beginning! In general it is hard to make judgements with such slim facts - without labs etc. Everything is filtered through an ignorant teenage consciousness and mixed in with babble about stuffed animals. It is so great that she is better. Her certainty that a) it was Lyme and b) the antibiotics cured it, is so, so flawed. Jytdog (talk) 21:20, 11 January 2014 (UTC)

In one of the early video, at about 4 min, she says: "All the doctors, I don't know, it's not fair.. they push me away, they say my case is too complicated, they don't know what to do, they don't know what medicines to try.. well at least one did, with the clonidine. But they will figure it out soon!" This is where every day ignorance about what medicine in the 2010s can do.. with neurological stuff we are still very much in the dark, both diagnosis and treatment-wise. (What is that old saw: "if you can cut it and see it, it is neurology. if you can treat it, it is psychiatry" that is still pretty true.) She was so offended by the psychogenic diagnosis... as though that meant she was just making it up. ("give me one reason why I would fake this...") Ignorance is hard to deal with. Her hope is inspiring for sure. Jytdog (talk) 21:20, 11 January 2014 (UTC)

In the Diagnose Lyme! video, at about 3:30, she says "also dr trifoletti and dr daniel cameron, they have been awesome, helping treat the lyme disease, they now know what is causing all these problems and are able to further my treatment. also all you people who are going through things like I am..... if they are telling you it is all in your head, do not believe it, unless they have done more blood work, just keep fighting and pushing through because it might be lyme. you just never know. ... all the regular doctors cannot be trusted, because they have no clue what they are talking all the time. if you don't fit a description, they are going to say it is all in your head and send you to a psychiatrist, and say it is conversion disorder... and try to find a specialist, someone who cares. you don't want to have someone tell you its in your head. that hurts a lot. they don't know what they are talking about. i have lost a lot of trust and faith in them." This is where the arrogance of the Lyme doctors is so dangerous. They give patients like this, who don't understand how hard medicine is, The Answer that they so desperately want and that is not necessarily obtainable, they erode trust in the mainstream along with so many other things in our society (e.g. Fox news which is always spinning conspiracy theories and is now the #1 "news" outlet... so, so much bullshit churning. it is a hard time to be human). Jytdog (talk) 21:20, 11 January 2014 (UTC)

talking about bullshit conspiracy theorizing, you have this kind of stuff going on about these poor girls too .. http://www.youtube.com/watch?v=Xbdic9MaED8 too, btw. Jytdog (talk) 21:20, 11 January 2014 (UTC)

her mother's video is so.. incoherent http://www.youtube.com/watch?v=v9VQdLebJtM "just because you can't see it doesn't mean that its not there". "doctors think it is easy, but it's not." "we need understanding, we need to fight, we need to bring awareness to these medical mysteries, like lyme, or Pandas, or pans, or toxins in your system" This is so, so much babble. Heartfelt for sure. babble. and dangerously flawed. Should we as a society spend money on cardiovascular disease on cancer or on Lyme? What would she be saying if her daughter had some rare cancer? Jytdog (talk) 21:20, 11 January 2014 (UTC)

not sure what you wanted me to take away from this. while i am really happy for Lori being better, it is a sad story, over all. ~maybe~ the antibiotics actually killed spirochettes and this made her better. maybe. this is an anecdote, and pulling generalities from it is not valid and is dangerous. Jytdog (talk) 21:20, 11 January 2014 (UTC)

I Did NOT expect you to change your mind. I did NOT expect you react any differently than you did. The purpose of what I was talking about had nothing to do with Lyme or Tourettes (which I also have). I have had email exchanges with two people on the ILADS group (fish and Auwaerter) and the editor of NEJM. I can send their responses to you if you want. I am NOT trying to advocate the Lyme clinics!!! I was trying to point out informationalism which you ask about. You believe in science, and even medical science although you agree it has limits. You believe in Lyme science from the main stream because it is science and mainstream. You believe the outlier studies are less reliable, and are legitimate to see as fringe. I have conceded all those points, and really respect your opinion, and do not want to change your opinion. What I thought we were talking about was why I saw things differently.

The video's were about informationalism NOT about Lyme, although I consider it higher value information than you do, I suspect that younger people would consider it higher value than I do. I only asked you if it moved you, and if you thought it was authentic. I now ask you if you think it strange that I give it any informational value? And this, I think, is where informationalism drifts from materialism, and I see it in the language. As you successfully did, it was possible to dismantle the entire premise you thought I was making. She is a teenager, she has a weird mother, she has feelings, she is manipulated. This is all true. Materialistic thought discounts non-controlled experiments. But a large amount of life has not controls. What controls are created are fantasy's. Without facts we are aimless. Once IDSA loses control there is anarchy. Can you not see why it is rational to look at IDSA as a political organization (they are not, and I am not saying that, this is a hypothetical) and Lori as a controlled experiment?

If you think that no rational person could give a set of authentic datum value higher than an official organization then I can understand your frustration with me. But remember, I was not talking about Lyme or Wikipedia. I was talking about informationalism, which you asked about.

I have asked myself how this relates to Lyme and Wikipedia. IDSA is losing the Lyme wars. I am not sure they deserve to. That is why I have been in email conversations with them. I have said to them that I have studied it deeply, am inclined towards the opposition view, and want to understand why their opinion is backed by credential and conviction, but still doesn't seem compelling. Maybe I am the one to help them learn to use the skills of informationalism. If they are right, they should win. If they are wrong, they should understand why it looks this way.

As for Wikipedia, it is a fascinating case. It is pure informationalism in principle, with pure materialism as a set of rules. And this is where these consensus stalemates come from. It was a first experiment, and really successful. I imagine, for example, something differently structured than WP for individual research, with some form of expert review, that is open. I imagine collections of private medical data used for machine learning, and also used by people like you and me to "out" stupid practices.

I am very sick today. So am stopping now. Thx.Bob the goodwin (talk) 03:39, 12 January 2014 (UTC)

I am really sorry you are feeling poorly today. I am sorry. And I appreciate you taking the energy and attention you have available to talk with me. Thank you for that. We are talking about so many things!

• So, I don't think Lori's mother is weird, at all. Nor do I think Lori is weird. Lori has suffered terribly and her mom, too. They have been on a very hard journey and Lori is better now. I say pretty often that ignorance and passion are a pretty dangerous mix (a very human one), and what is unfortunate is that the pain they went through have made them passionate about something they barely understand.

• Is IDSA treatment guidelines ignorance and passion too? I keep trying to see where you draw black and white lines in a sea of dark-dark-grey.Bob the goodwin (talk) 06:28, 14 January 2014 (UTC)

• To the extent this is happening a lot, (which is what I think you mean when you say "IDSA is losing the Lyme war") this is a sad thing. However, I am not sure what you mean when you say that IDSA is losing the Lyme wars - what the basis for the statement is in reality. I have spent some time online in the chronic lyme boards and websites, and is certainly a vibrant language world. But I don't know how big that that language world is.

• I have never studied the language of Lyme. I have studied the language of the world wide web over years. As for 'sad' I am not sure if you mean lori (yes sad) or you mean Lyme treatment. My rough metric of losing the wars is the articles in reliable newspapers and magazines. The trend has been towards more balanced articles (rather than strong emotion on one side of the debate or the other.) And also the trend has been more towards pro-lyme articles. I also have seen a trend over just 3 years in the MD world towards a lot more moderation of views. Bob the goodwin (talk) 06:28, 14 January 2014 (UTC)

• I don't think it necessarily the case that "once IDSA loses control there is anarchy". On the one hand the practice of medicine is highly regulated; on the other hand doctors that mind things like informed consent are going to remain pretty free to prescribe approved drugs as they see fit. However, insurance companies are not going to budge until there is clinical evidence. What I hope the chronic lyme community will do is continue to raise money for clinical trials and prove whether long term antibiotics are effective or not, and for whom. There are significant risks!

• Herxheimer reaction might have occurred and been involved in the fatal outcome yes plus these risks. But in honesty Lyme is not fatal in the way HIV is - especially the treatment. But it leaves you miserable and suffering. And there is risk everywhere in life.Bob the goodwin (talk) 07:33, 13 January 2014 (UTC)

• To close the circle.. it is possible to find out if long-term antibiotic use is efficacious enough, and safe enough, and for whom. The experiments just have not been done. What I see IDSA saying is "stop recommending long-term antibiotic use for anybody you judge has CL -- hold your horses and wait for the data", not "No it will never work." (there is some "it is hard to see why it would work" mixed in there for sure) Good data will win the day. I know that when you are suffering, "I don't know" is a shitty, unsatisfactory answer. But it is a true one. If I came down with chronic lyme, i might try long-term antibiotics. But I would get very very informed about the risks firsts, and do everything I could to mitigate them. And I would run away from any doctor who wasn't willing to have a very frank conversation with me about the risks.

• I have never seen a doctor who was not frank in my life. Maybe I am lucky. Ooops. one exception, mainstream medicine avoids the word Lyme. they are not frank about that risk.Bob the goodwin (talk) 07:33, 13 January 2014 (UTC)

Information that I value on this subject, but don't expect you to have the same opinion:

• Lori has the same symptoms as me, and the literature says it "rarely happens" (late onset tourettes)
• I did not discover I had lyme from any malipulative doctor. I found papers about a urinary tract disease that eventually gave me cancer, and found 2 (now 3) papers linking in the Lyme.
• I did not go to the doctor. I self treated using my own theories. Information. Original Research.
• I went to one of the top doctors in the field(mainstream professor), who did my post cancer operation, and he confirmed my case was very advanced, and that it was no longer active, and that he had never seen that before.
• Neurological symptoms are well documented, even if specific conclusions are cautious. Harvard educated neurologist said I showed classic Neuroboreallis, and absent all other diagnosis, I should be assumed to be Neuroboreallis. I should be careful, nobody in mainstream medicine uses the word Lyme unless they have to, and then they speak in codes. He said something more like (still paraphrasing, I don't want anyone in trouble), "we first rule out all other possibilities, because we know Lyme cannot usually be detected at your stage. After that we can discuss."
• Actions that appear political in the research and treatment world, and not scientific.
• Rhetorican mischief on the part of the people I had always believed we near gods.
• I experienced something called "Herxheimer" which is ridiculed in mainstream.
• I experienced the feeling Lori says about 'discounting you' and the blame of patient/dismissiveness implied in 'in your head'.
• I have had email relationships with a few people who have gone through lyme clinics. Some from beginning to end. None are beautiful stories. But more than most got their lives back like Lori did.

But I remain completely 100% committed to the truth. I am spending most of my time right now trying to convince myself how the IDSA could be right and yet appear so scientifically defensive. I am trying to convince myself that auto-immunity is possible in this case, or if fractured bacteria can remain semipermanently in tissue and trigger ongoing immune response. I am trying to convince myself that a placebo effect plus the anti-inflammatory value of antibacterials is sufficient to explain the percentage of people that seem to be helped by Lyme clinics.Bob the goodwin (talk) 04:09, 12 January 2014 (UTC)

Found another interesting informationalism datum: this is current work from one of the pro-chronic lyme guys: "His current areas of interest include his ongoing project, The Lyme and Associated Diseases RegistryTM which follows each selected patient from the beginning to the end of their illness, to try to divine out what the various symptoms mean, which tests are worthwhile, to identify the medications and treatments that have the highest likelihood of curing the illness, and to uncover any possible drawbacks to treatment."Bob the goodwin (talk) 05:16, 12 January 2014 (UTC)

Love that last point! Data is what we need. So it sounds like you tried long-term antibiotics! What is going on with that? Would be very interested if you care to tell. I take it that you tested negative on the standard Lyme tests. True? It may be that any of these hypotheses you state are correct - that dead (I assume when you say fractured you do mean dead) bacteria can lodge in tissue and cause ongoing immune response. It may be. Human illness is something that is still very mysterious to us - something we don't understand. Likewise human health. Human biology over all is still a sea of ignorance in many respects. It is hard to stand on the shore and say "I don't know." It is even harder to be sick and hear "I don't know, it may be psychosomatic" Psychosomatic illness (and I would say health too) is in the Marina Trench of our ocean of ignorance. We don't understand placebo effect nor its opposite (some call it the "nocebo" effect) but they are undoubtedly real. We don't understand how many drugs work. Calling something psychosomatic is just saying "I cannot find any physical cause for your illness". Those are just the realities of medicine, which are so hard to face when you are actually sick. It was very hard to watch my wife suffer over the month she spent in the hospital. I am very sympathetic to you. Jytdog (talk) 06:46, 12 January 2014 (UTC)

The short answer on my personal OR is that I don't know. Absolutely either side could be wrong, and they both could be wrong. I just see more lies from one side. I have actually been communicating with someone at IDSA (one of the big guys) to see if I can't figure out what this war is really about. It is the war that is killing us, not the IDSA and not the minority.Bob the goodwin (talk) 15:27, 12 January 2014 (UTC)

(edit conflict) :::::I went looking for the database - looks like there was an effort started in 2008 that appears dead now. I think this is the one you mean. Interesting in that it is a self-reporting database. There has been lots of talk about such things - John Wilbanks is a leader in the field of open science especially through his work at Sage Bionetworks. Here is a TED talk he gave that is well worth watching. He talks about self-reported clinical studies. I like much of what he says, but there are some things I think are dangerous that he says - like at about 8 minutes in, when he is showing his genome, he says "our genome isn't dispositive, it just gives us clues, but I have an 33% chance of getting prostate cancer, a 22% chance of getting psoriasis, and a 14% risk of alzheimers." That is such an abuse of science - those percentages are very very far from certain and this was a wildly irresponsible statement. Now, when he talks about "data" he is actually talking about real, objective data. St about 7:30 he talks about an app to track what you eat, that involves taking pictures of your meal, not just verbally reporting it, and he notes that people generally that "the pizza i am eating is significantly healthier than the pizza other people eat." So I am not sure that the self-reported database - the registry - that you mentioned is going to be very useful.....Jytdog (talk) 15:39, 12 January 2014 (UTC)

But you know these databases have to be mined. They lack controls. Judgments are made. Informationalism is best if it is open, so that peer review becomes crowd review. It is okay to make a generalization of "I can only make this work if I assume that gender and race can be ignored" and then show your homework. Someone can come back 2 years later and the assumptions and the outcome and make new assumptions. There is no 'fact' or 'proof' ever made. Even data is mixed provenance. That is the life we are learning to master.Bob the goodwin (talk) 07:33, 13 January 2014 (UTC)

I want to ask you something and please forgive me if it seems dick-ish somehow. But have you put the following two questions to any of your doctors: "Why can you not figure out what is wrong with me? Why can you not heal me?" I am very interested to know if you asked (and really asked, not asked rhetorically) and if anyone really answered, and if so how. Jytdog (talk) 15:42, 12 January 2014 (UTC)

The question is fine. I have two problems, first I am neuropsychiatric, inconsistent and not self-objective. So I try to refrain from blurting self referential nonsense. The second problem is high have tried to be transparent about OR but not push OR to keep a more honest discussion. As humans we tend to be invested in people we like. I think the Lyme wars have frozen conversation, and I think specialization has closed perspectives. I am a very fortunate patient. Late stage neuro-lyme is my best case diagnosis, and it is not great. I happen to think the diagnosis is true, and even then have doubts about the rest. So I study the reliable source data, and people like you help me keep neutral, and I keep seeing the War, and not seeing any science. Then I get mad.Bob the goodwin (talk) 22:13, 12 January 2014 (UTC)

umm answers to the questions? :) Jytdog (talk) 22:33, 12 January 2014 (UTC)

No I did not ask that exact and clear question. I assume when I see a doctor that he is going to give me information about what he can do for me. I can't ask a urologist about cancer, although he might do the research for me. I do not think there is anything called a chronicologist. I did take my Mother to a place that researched amyloidosis (a chronic inflammation disease like mine) and in that clinic they had every discipline in one place and they all saw you on the same day and then met at the end of the day about all the patients. The neurologist and LLMDs are probably the closest two types of doctors. LLMDs tend to be cash only so don't spend time with patients and order a lot of tests because the insurance companies will pay for those and that is how they monitor for risks. My understanding is that they are slammed 24x7 with people coming through and if they see consistently elevated inflammation and normal symptoms of Lyme and a reasonable exposure to a tick they will try antibiotics. But they will stop them quickly if there is no Herxheimer reaction. Only syphilis and lyme have strong herxheimers. The neurologist is only interested in my brain. If he wants to do intravenous antibiotics his hospital may have limits and I may have to go to a LLMD. We will see. I am trying not to think too far ahead.Bob the goodwin (talk) 07:33, 13 January 2014 (UTC)

I wanted to come back to the main topic of this section, which you have been urging me to do. I want to take another shot at definitions: "Informationalism" takes as its base, what people say about the world. This is a key thing, since the base is not, say experimental data, but rather, but rather expressions (video, writing, etc) in words (so what matters is not the data, but what people say about the data). Text (and transcriptions of videos) becomes the data that can be mined using mathematical techniques to look for discourses, trends and themes; summaries (expressed in text) of what others are saying can also be created and these too become part of the base. Various discourses can be analyzed on the basis of what kinds of authority they claim and what authority the discourse relies upon, but informationalism itself doesn't make judgements what is authoritative. Informationalism is a tool to capture and understand the zeitgeist and is useful for understanding what decisions individuals are making and why. (end) what do you think of that? Jytdog (talk) 16:26, 12 January 2014 (UTC)

I think that is very good. I try to be more observational than you did, and more constructionist in the sense of how it is used rather than why, and more literal in how the language puts stuff together. But if I were pressed to agree with you, I would come close. You also use the word 'say (about the world)', I would personally prefer 'hear what people say' I also would prefer universe to world, because much of informationalism utilizes spiritualism. Bob the goodwin (talk) 22:26, 12 January 2014 (UTC)

OK I am glad I am that much closer to understanding what you mean by the term! Jytdog (talk) 22:33, 12 January 2014 (UTC)

Thanks I think we have used up that topic. Are you interested in an article I got published about my experiences on Wikipedia/Lyme and another I that is about to be published (It is a 'speaking to power' website that I have contributed to over years that has 40K visitors a day or so.) Because of it I was contacted politely by some on the IDSA committee, and I am hoping the second one will continue the conversation. I am moving from learning to teaching: "informationism activism" the Bob theory...Bob the goodwin (talk) 07:33, 13 January 2014 (UTC)

Sorry I missed this reply! I would be very interested in seeing that, for sure! Jytdog (talk) 19:40, 16 January 2014 (UTC)

Now that I kinda understand what you mean by "informationalism"... shall we address the actual subject of the section you created here? With respect to, "is it new?" I think the answer to that is "kinda." Couldn't get there without Heidigger, post-modernism, and the internet, for sure. :) Jytdog (talk) 19:40, 16 January 2014 (UTC)

Note

I saw your article at the Yves blog. A lot of information in your sandbox is reasonably well-referenced. If there is a reluctance to adding it all to the Lyme Disease article, a separate article on Lyme Disease Controversy can be created, and such controversy can be treated in detail. However, this all may require a significant investment of time. Contact me by e-mail, if you want to discuss this further. The Sceptical Chymist (talk) 15:48, 8 January 2014 (UTC)

Hi, I'm Carriearchdale. Bob the goodwin , thanks for creatingLyme "wars"!

I've just tagged the page, using our page curation tools, as having some issues to fix. Please add some categories to the article. Thanks!

I have started doing some general copy editing and fixed the cites up a bit. The article looks very good, and contains quite important information. I would like to help you with it as far as copy editing, and whatever other help you might need.

The tags can be removed by you or another editor once the issues they mention are addressed. If you have questions, you can leave a comment on my talk page. Or, for more editing help, talk to the volunteers atthe Teahouse. Carriearchdale (talk) 07:29, 3 February 2014 (UTC)

a volunteer

I am volunteering to be the tertiary editor here if BobtheGoodwin thinks that is okay. I understand the SkepticalChymst guy/gal (not sure on that) is going to the the primary role.

I did find and put in already the reference for the senate hearings of the 103rd Congress that occurred in... I think maybe 9,3 that Senator Ted Kennedy chaired. I also after finding the file of the actual GPO printed congressional record of the hearing at archive.org have taken the time to upload the file to the commons and they have accepted it. I still need to send up the file or image of the front page to be used as the thumb image. I think that it is supposed to appear down in the references near the cite. I am not sure. If we don't like the image on the page we can always take it out later. I hope everyone is having a fabulous sochi kind of weekend!!!

I thought the congressional record was an awesome inclusion. I read the whole thing tonight. Burrascano's reference to Tuskagee (twice!) was very inflammatory and that event was very much a watershed in the escalating war. In the remaining 20 years there has be virtually no progress in the science, diagnosis or treatment. It appears that all the energy went into the war on both sides. Let me know if I can help with any research or if you need any summaries/ideas. Bob the goodwin (talk) 09:28, 13 February 2014 (UTC)

ciao!

Hi BobtheGOODWIN,

I do apologize my plans took at a dramatic change and I had to fly to Toronto. I did not want you to think I had deserted you. That was certainly not the case. I have some other projects gearing up to launch in the last quartes in 2014, so I am going to be pulling way back here at wikipedia. I have decided thought that am going to stay on here with you to get article all finished up. btw, I read your sections on Informationalism and you should go ahead and put that up as a single article. You were wrong when you said you are not a good writer or creator of articles.

ciao!!! Carriearchdale (talk) 07:45, 14 February 2014 (UTC)

Carriearchdale (talk) 20:39, 9 February 2014 (UTC)

I would greatly appreciate it. I am not good at writing the articles, mostly good at researching and finding balance.

I will put a comment in the talk page about the second paragraph. It has a couple of problems I am not sure how to handle.

Thanks!

Bob Bob the goodwin (talk) 21:24, 9 February 2014 (UTC)

BXO sources

Hey Bob, I saw your edit regarding BXO get reverted, and Doc's reply to you on his User Talk. Don't get discouraged, just pay attention to the WP:MEDRS sourcing guidelines. Here's a quick rundown of the issues with the sources you pulled: Kizer 2003 (PMID 12602705) was a relatively old primary study; same for Mallon 2000 (PMID 10724196). The third source you pulled, Clouston 2011 (PMID 22085120) actually looked fine to me, it was a recent MEDLINE-indexed review article. See if you can find another source for the other parts of your edit. For example, have you seen PMID 24295833 or PMID 21307992? It takes some practice identifying good medical sources, but it's very rewarding once you get the hang of it! As always feel free to ask first if you're unsure. Zad68 05:48, 11 February 2014 (UTC)

Informationalism new summary

Induction and Deduction

• Definitions

• Induction: Every day the sun came up, so tomorrow it will come up again.
• Deduction: The earth rotates around the sun, so there is a formula for sunrise.

• Induction involves observation and sample size. Deduction involves falsifiability.

• Both induction and deduction have strong historical and philosophical standing.
• Deduction has higher standing in materialistic culture. Materialism prefers fact and control.

How materialism promotes deduction

• Finding of fact

• Falsifiability requires consensus that something has been properly falsified.
• Experts are formally assigned the task of finding facts.
• This is done in law explicitly where falsifiability is not scientific.
• This is done politically to coordinate activism.
• This is done implicitly when dissent fades.

• Discipline (enforcement of fact)

• Property rights (right of control given to some)
• Limits to participation for those who don't respect consensus/property
• Rise of the 'expert' class.
• Force (anger, law, etc.)

• Language

• Civil society of fact and control.
• Marginalization of induction

False Narrative of Deduction and Induction

• Pro-deduction

• Deduction is a small amount of high reliability data.
• Deductive facts lend themselves to construction of complex reasoning.

• Anti-induction

• Induction is a large amount of low reliability data.
• Doctors saw that mothers of mentally ill children were icy personalities and concluded that refrigerator Moms caused mental illness.
• Most failures of science were inductive.

False Dichotomy of Deduction and Induction

• Finding of fact is a form of induction

• Most medicine has no deductive basis
• Tradition has become fact.

• Deduction has limits

• Biology is too complex for falsifiability
• 95% probability is substituted for falsifiability.
• 95% rule is easily manipulated.
• Experts rule on fact.
• Fact is controlled.

• Expert finding of fact is political. Politics can undermine deduction.

• Most believe that climate change is caused by humans.
• This theory is not falsifiable.
• Experts are declared, consensus is claimed.
• Politics are obvious. Facts are contrived.
• People still believe in climate change. But people stop believing in deduction.

• Deduction and Induction are layered

• Social decision making requires reason.
• Complexity must be broken into hierarchy of questions and answers
• facts are simpler to reason about that probabilities.
• Expansion in language and digital communications are facilitating more complex reasoning.
• For example: murder is less tolerated because it is no longer common to have to kill in order to protect yourself.

Exposing materialism

• Misuse of law now obvious

• Financial crisis.
• Civil society uses great force against the marginalized.

• Control of fact is exposed as political

• Fact discovery process cannot be kept secret
• Finders of fact are found to have conflicts of interest.
• evidence of falsifiability cannot be suppressed.

• Mobility prevents consensus

• US facts collide with EU facts.
• Wall street facts collide with silicon valley facts.

• Evisceration of punditry.

• Rhetoric of expertise is being destroyed.

• Evidence of one

• Induction by vignette is ridiculed by materialism.
• Consensus cannot exist if too many people object by reason of vignette.
• People believe their friends, and their group of friends. More than the experts.

• Big data

• computers outperform experts in many areas

• Big information

• Innocence project is exposing weakness of fact finding.
• Half life of facts is decreasing
• The aggressiveness of Wikipedia editors to protect fact.

Information

• Deduction produces information useful for prediction

• Is better able to isolate variables and predict
• Is useless when variables cannot be identified, much less isolated.

• Induction produces information, and mass information elevates induction

• The sun does come up every day.
• Big data is a 'fact' for many inductionists.
• We can keep video histories of observations so that they retain information through communication path.
• The art of statistics is rising in our language and culture.

• Weighing evidence by point of view.

• Discounts political experts.
• Gives personal point of view primacy.
• Allows new organization of society which itself gives fluid weight to information.

Informationalism

• The English language is changing.

• Words around fact and control are fading.
• Words around expert and rank are fading.
• Observational rhetoric is common.
• Reaching conclusion is a more formal language construct.
• Probability, point of view and correlation are more explicit.

• We are welcoming a new form of induction.

A barnstar for you!

	The Citation Barnstar
	You are t00 an article writer!!! congratulations!!!!!!!!!!!!!!!!!!!!!!!!!!!! ciao!!! Carriearchdale (talk) 07:47, 14 February 2014 (UTC)

hiyas,

I left a comment regarding you on that guy jytdogs talk page. So sorry to have been there during that lengthy discussion

I had a really serious emergency occur and needed to be elsewhere. Please bring me up to speed on what happened to the Lyme wars article.

We really should exchange emails, because I am not sure how much longer I will be able to stomach this place.

I remain quite sincerely, Carriearchdale (talk) 10:17, 19 February 2014 (UTC)

ANI

WP:BOOMERANG. I see other editors there pointing out chapter and verse of how your version of Ronan Farrow is biased and goes against Wikipedia policy. I'm speechless at your actions. Fortunately, other editors are not. --Tenebrae (talk) 15:05, 4 March 2014 (UTC)

I just now have seen that you've only been here since December 28. You're defending disruptive OR and POV biases when you've been here barely two months, rather than try and learn from longtime, experienced editors? And then starting what appears to be an ill-advised ANI when you're the one violating policy? Wow. --Tenebrae (talk) 15:08, 4 March 2014 (UTC)

I do not believe that you are violating any policy regarding the stuff for the Ronan article. Continue to stick up for what you believe is right Bob the Goodwin! The bullies and gang mentality styled users/editors/admins, and others around here are too far down into the swirling pit of cultural rot I call wikipedia. These persons are not ever going to go away since they are being pulled farther and farther down into it. Their eyes have become very muddied on their way down into the oblivion near the bottom of the pit. They can't see right or wrong, and they will continue to not ever understand the meanings of the words neutral, unbiased, biased, fair, consensus, discussion, civility, incompetence and competence.

Keep up your earnest and thoughtful work here, and maybe wikipedia won't die as son as it appears it will right now. Bravo, Sir, bravo!!!

Have an exquisite night Bob the GoodOne!

ciao!

Carriearchdale (talk) 05:02, 8 March 2014 (UTC)

A barnstar for you!

	The Real Life Barnstar
	Congrats!!! The Real Life Barnstar is awarded to editors who make contributions both online and offline. Happy Mardi Gras to Bob the Goodwin!!! The Mardi Gras' slogan is "Let the good times roll," which is translated literally into French as Laissez les bons temps rouler!!! ciao!!! Carriearchdale (talk) 01:34, 5 March 2014 (UTC)

Investigation

I have filed an investigation against your for sock puppetry due to your involvement with user:Carriearchdale in the past. I view the investigation as being precautionary, and I apologize if it is made falsely, as it well may be. To contest and contribute to the investigation, please go to the investigation page. Thank you for your cooperation. Flip^andFlopped ツ 14:48, 11 July 2014 (UTC)

All I did was closing a case that was withdrawn. My decision did not involve evaluating the claims made by any parties. OhanaUnited^{Talk page} 03:23, 7 September 2014 (UTC)

Revert

What was this?--Bbb23 (talk) 23:13, 12 October 2014 (UTC)

Arbitration

Please note that you are required to notify all persons that you name as involved in a case. AndyTheGrump (talk) 01:10, 13 October 2014 (UTC)

Thanks. I did not bother to name you as you had already responded so quickly I did not need to inform you. Bob the goodwin (talk) 04:13, 13 October 2014 (UTC)

Your recent edits

Hello and welcome to Wikipedia. When you add content to talk pages and Wikipedia pages that have open discussion (but never when editing articles), please be sure to sign your posts. There are two ways to do this. Either:

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This will automatically insert a signature with your username or IP address and the time you posted the comment. This information is necessary to allow other editors to easily see who wrote what and when.

Thank you. --SineBot (talk) 01:31, 13 October 2014 (UTC)

Declination notice (you withdrew, so not a surprise, but notifying per rules)

The arbitration request involving you has been declined by the Arbitration Committee The comments made by arbitrators may be helpful in proceeding further. For the Arbitration Committee,--S Philbrick(Talk) 17:17, 14 October 2014 (UTC)

Orphaned non-free image File:Parallax Graphics Logo.gif

⚠

Thanks for uploading File:Parallax Graphics Logo.gif. The image description page currently specifies that the image is non-free and may only be used on Wikipedia under a claim of fair use. However, the image is currently not used in any articles on Wikipedia. If the image was previously in an article, please go to the article and see why it was removed. You may add it back if you think that that will be useful. However, please note that images for which a replacement could be created are not acceptable for use on Wikipedia (see our policy for non-free media).

Note that any non-free images not used in any articles will be deleted after seven days, as described in the criteria for speedy deletion. Thank you. Stefan2 (talk) 00:54, 3 December 2014 (UTC)

Talk pages and noticeboards

Glad to see you participating a little here again, but please make sure you are not changing anyone else's posts, as you did with your last edit at Wikipedia:Administrators' noticeboard/Incidents. Less importantly, please sign your posts: if you're on a device that doesn't have the ~ key, there should be a button marked with a squiggle or a pencil or something that you can click on to insert the 4 tildes. (The section has been archived but it wasn't closed, so I'm going to mark your post as unsigned and removed the 2 additions to others' posts.) Yngvadottir (talk) 18:56, 20 July 2016 (UTC)

Answering your questions

Semi-protection is explained here. I believe you are right about there being no list of reliable sources or, conversely, sources considered unreliable. So, yes, consensus would be determined on a case-by-case basis. KalHolmann (talk) 02:31, 20 May 2018 (UTC)

Speedy deletion nomination of File:US Newborn Circumcision Rate (%) 1900-2010.pdf

A tag has been placed on File:US Newborn Circumcision Rate (%) 1900-2010.pdf requesting that it be speedily deleted from Wikipedia. This has been done under section F10 of the criteria for speedy deletion, because it is a file that is not an image, sound file or video clip (e.g. a Word document or PDF file) that has no encyclopedic use.

If you think this page should not be deleted for this reason, you may contest the nomination by visiting the page and clicking the button labelled "Contest this speedy deletion". This will give you the opportunity to explain why you believe the page should not be deleted. However, be aware that once a page is tagged for speedy deletion, it may be deleted without delay. Please do not remove the speedy deletion tag from the page yourself, but do not hesitate to add information in line with Wikipedia's policies and guidelines. Pkbwcgs (talk) 08:09, 24 August 2018 (UTC)