Shannon, why has Steve Carr's post been shifted to general health?

I would have thought his post to be very much on topic although it has nothing to do with ablations, if you know what I mean.

Hi Colindo,

Shannon is traveling this week and won't be able to respond until Monday, so I gave him a call and we talked this over. Neither of us can remember which one of us moved it, but we're in agreement on why it was moved.

First, let me say that having a post moved to the General Health forum isn't a demotion or negative in any way. That section is every bit as important as this one. And note that we did leave a link here pointing to its new location, so it's still in the thread index and not deleted from here.

Our general thinking is this forum is where people new to afib come first, so it needs to be tightly focused on afib solutions that have at least some degree of scientific backing, or at least have successes reported by many people, and they need to be practical things mere mortals can achieve without hurting themselves. Steve's approach is very far out there, and potentially even harmful. So until a dozen people try his approach and report equally positive results, we don't think it's the sort of thing someone completely new to afib should be presented with first. That's particularly true when claims of "cures" are made. I know Steve didn't use that word, and he even specifically admitted his theories were speculative, but a newbie desperate for solutions isn't going to see the "unproven" and "speculative" parts. They're only going to see the "7 years with no afib" part and they're going to think CURE! We want them learning a little more before they see highly speculative treatments with a clinical trial that consists of one person.

So we left it up for a few days so people could see it, and then moved it to GH. If you hadn't already noticed, there's a difference between the two forums, with GH being more liberal about alternative medicine, speculative solutions, etc. That doesn't make it any less of a valid forum. It just makes it the second place we hope newbies visit, not the first.

An alternative would be to "Flag" the Post, with an Administrators warning. Traffic is much less on the General Forum.

Anti-Fib said:

An alternative would be to "Flag" the Post, with an Administrators warning. Traffic is much less on the General Forum.

You are missing the point -- which is the post was speaking to AF which is this Forum. I read both forums but apparently there are others that come here don't. Doesn't seem to be a lot of traffic here.

L

Look at the "views" column in the forum index of both forums. Hundreds of people visit this site every day. This topic alone already has 70 views and many others have 200-300 views in just a week or so. The GH forum has a fraction of that viewership.

That's an important thing for people to understand. For every person who posts here regularly, there are probably 100 other "lurkers" who read but never say a word. Those people are reading and absorbing what we say, but we never hear from them so it's easy to forget they exist. But they do, they're the majority, and they're just as important as anyone else, so we need to be aware of the influence we have.

Carey,

As you point out there is very little viewership in the general health forum. Steve's post and his success should be shouted from the roof tops not hidden away, as you have done. How is he going to get 10 people to try his protocol (which is pretty much harmless) if his posts are hidden away.



Edited 2 time(s). Last edit at 12/10/2019 12:38AM by colindo.

I would suggest shouting it from the rooftops when more than one person has produced the results.

And his approach isn't harmless at all.

And it hasn't been "hidden away."

And like I said, neither Shannon or I could remember moving it, so if you're going to pick someone to blame then please try to be fair.

Well, that explanation will cause me to check into the General Health section daily. I dont disagree with Carey's explanation. These groups need to have some boundaries and controls in place for good reason. Of course we do understand that the scientific facts to back conventional medicine is anything but curative also and is a symptom reliever.

Just my 2 cents;
When someone writes a Book on a Forum it becomes very hard to follow,read, comprehend etc. This has been addressed before and I understand why. Get to “your point” without writing a book.
Just my opinion. Keep your post short, nice and in layman’s language. This is basically a layman’s forum.

Smackman::

Some people like their posts short and sweet, some don't care, so why not carry on as before. If you look into this phorum you will find longer posts than what Steve Carrr posted, his post was mostly his words, many of the other posts of which I am speaking were copied. I liked Steves posts and hope he continues.

Liz

Quote
Elizabeth
Smackman::

Some people like their posts short and sweet, some don't care, so why not carry on as before. If you look into this phorum you will find longer posts than what Steve Carrr posted, his post was mostly his words, many of the other posts of which I am speaking were copied. I liked Steves posts and hope he continues.

Liz

Quote or not, Way to long IMHO.
Anyway Life is Good in NSR

To be clear, the length of the posts had nothing to do with the decision to move it.

LOL... If length of posts was a factor, I'd have to move all of Shannon's posts to GH.

I’m very sad that a post like Steve’s has been banished to the General Health Forum. Yes banished. I write this because when I first joined here in Aug 2004, I got the impression that it was possible to do what Steve has done. I did not think it would be easy or that any single person’s approach would fit me. Because I thought it was possible, I read nearly every post on the board to that time. I read Hans’ book, “Lone Atrial Fibrillation Towards a Cure.” I read every issue of the Lone Afib Report. I spent an inordinate amount of time in PubMed reading all kinds of obscure papers, trying to come up with a plan for myself. When my approach showed some early promise, Peggy Merrill (who still posts occasionally) tagged one of my posts with a tagline: “The List.” I did not know what “The List” was. It turns out it was Peggy’s way of being able to track success stories. In December, 2007, she compiled all these stories here: SESSION 61: Protocols for reducing/eliminating afib (November 5 -December 15, 2007)

Had there not been a tenor that what I’ve accomplished was possible, I would have never spent the considerable time and effort I did to work it out for myself.

I am a moderator on another board and I understand you don’t want to lead people on, but there must be a way to put caveats in or change the title or whatever to allow work such as Steve’s to be posted on the afibbers board. Steve has obviously and generously put a lot of time into compiling and documenting what he’s done and how he’s done it for the benefit of all. In my opinion, discouraging this is a shame and ultimately detrimental to the board.

I understand and agree with Carey and Shannon's concerns. Although I follow a low Calcium diet myself with some success, there is a risk of newly arrived and/or less informed readers being misled about claims of a cure for AF, even if they are mostly implicit and are specifically warned off of. Also, there are some statements which are clearly false, for example there is certainly not 100% agreement in the medical profession with regard to the safety of megadosing Vitamin D.

However, the main forum allows similarly presented content on what is arguably more risky diets and treatments, which can for example result in clinically dangerous levels of hypoglycemia and hypothermia, as well as discussion of substitute anticoagulants which have not been rigorously evaluated for safety or efficacy. If this is the policy, then it seems only fair that Steve's posts should allowed.

I would agree with all those who feel Steve's post should definitely be on the Afibbers Forum.

Looks like a good compromise would be a caveat by the moderators included in Steve's post. Not trying to be a SA, the forum isn't a democracy, is it? Nevertheless it is an immensely helpful resource and of great comfort and hope for new afibbers - at least it was for me,
For myself, i don't care where posts end up because i look at all new posts.

I agree with what George said and the others. A complex issue, but the Post should be allowed. There are many other sources of info on the Internet, Many Websites written by Doctors, and other Forums. These other sources are usually if not always more basic. Ultimately intellectual advancement should not be held back by worrying about how a newcomer perceives the information presented on the site. In addition a lengthy or complex Post is self-limiting, in that a novice or even an experienced AFIBer would probably not buy into a Post if they did not understand the basic concepts involved, or if they thought it was to advanced in relation to their understanding or position. Any User new or old can and should ask questions if they are considering implementing advice if they have any uncertainty, in addition to running things by their Doctors.

Quote
The Anti-Fib
Ultimately intellectual advancement should not be held back by worrying about how a newcomer perceives the information presented on the site.

I agree with that in principle, and I believe Shannon does too, but I think it's quite different when the information is extremely attractive to people who are desperate and it's potentially harmful. (And I include "didn't work" as being harmful because it means they wasted time on an unproven remedy that didn't help them when other things proven to be helpful were available.) It's kind of like the legal principle of the attractive nuisance doctrine.

Specific example:

I used a self-devised protocol of preventing and terminating my atrial flutter for two years using potassium-sparing drugs and potassium chloride. Most of what I devised was based on information I obtained here. It was very successful, but also potentially very dangerous. I knew the dangers and dealt with them sufficiently to convince my EP (but not my PCP) to write me the prescriptions I needed. Later, I was asked to write an article for another web site describing what I did. I declined to write that article precisely because it is potentially harmful, it was tested by only one person (me), and I couldn't be sure people reading it would be as rigorous and follow my instructions as carefully as they needed to. They would just see CURE! and grab on to it, and I didn't want to be the guy who gave well-meaning instructions on how to kill yourself.

Anyway, Steve's posts weren't "banished" in any way. They were simply moved to the other half of this forum where more liberal views are entertained and a link to them was left in place here. Nobody should have a problem finding it. As I said before, it's just the second place we want newbies reading, not the first.

Things sure have changed on this forum in the last 20 years. The main thrust used to be about trying to find out what causes LAF and alternative approaches were very warmly embraced by former mod Hans. Now it's increasingly ablation-focused. Not surprising given both mods here are very pro-ablation and to be fair with good reason. And ablation techniques and EP experience has improved a great deal this last 20 years. And its true most folks won't have the self-discipline of the likes of Steve and George N. Hans didn't go the ablation route so readily but headed there regardless in the end. Anyway good to know that Steve's post and thread are still there with link provided at least. If nothing else this episode has got me looking at the General Health Forum when I never had previously and there's a lot of good stuff on there!

Carey, your decision to move Steve's post and your explanations of why you did it seem bizarre to me. I haven't had an ablation and don't take drugs, and have managed to reduce the frequency of my afib over the past 9 years (though the overall burden has stayed pretty constant as the average length has migrated upward), while basically eliminating previously chronic ectopics.

I don't consider myself a "success" story (or the opposite), and I am very interested in well-thought out, and in Steve's case, pretty simple to accomplish ideas that could help. (as opposed to the incredibly burdensome regimens that some posters advocate, or ones that are totally unworkable for my body like taking thousands of mg of magnesium).
His post makes lots of sense, and I for one am grateful for his experimentation and clarity.

Basically I interpret the essence of it as follows: get your vitamin D level slightly above what is generally considered the high end of normal range, stabilize it there, and during this time stop eating dairy and calcium fortified products for a while - see what happens for yourself. To suggest that that is dangerous is a bit like saying you shouldn't go swimming because you might drown.

I am left believing that your and Shannon's belief in and advocacy for ablation leaves limited room to support people in finding their own way on this deeply personal issue.

Hi Ralph,

You're blaming the messenger. Please don't do that, okay?

Calling us ablation advocates is a bit insulting, actually. We are patient advocates and we invest a lot of time with no pay doing that job. Show us something that works for more than one person and seems safe and credible and we're on it. But if you label your one-person success story as a "cure" or imply that it is, then we're going to be more critical and expect a bit more to back up your story because... we are patient advocates. We advocate for all patients, not just super-aware patients who engage in esoteric treatment regimes they invented that are beyond the average person's abilities and have no supporting data.

Moving the post to General Health was just a trivial administrative action. It's like moving a report from file A to file B. There was no censorship involved and none intended. The post is still there and available to everyone to read. I don't really understand why people think the GH forum is some sort of censorship. It's not.

It appears to me that Shannon moved the Thread, along with another one recently about Dental Cavitations.

Ralph Post is fairly spot-on, and appreciated. I don't consider labeling someone an "Ablation Advocate" in this context insulting, or inaccurate. It does not exclusively define anyone.

Excess Calcium has been discussed here before as contributing to AFIB going back many years. Steve Carrs approach is just much more extensive. Getting Calcium bio-available into the Body by Vit D supplementation vs consuming exogenous Ca, is nothing new or exotic.

After I read some his Threads 4 months ago, I implemented a simplified version of his strategy, and just merely cut out obvious sources of Calcium, primarily that being Dairy products. I had recent Vit D labs performed anyway, so I had a Baseline to work with, and I was already taking enough VIt D to maintain myself at high normal levels, so I just continued on normally with Vit D supplementation. I have been AFIB free for 3.5 months now, after being in and out of AFIB all summer. I changed 3-4 variables at the same time, so I cannot say how much reducing exogenous Ca helped.

I am thinking that most people, even if they did buy into Steve's idea's would only end up doing a much more simplified version of it, and that simplified version would pose less risk of adverse effects.

The Anti-Fib : I have just added a new post to the original topic, some of which relates directly to your very interesting info.

As the coined phrase from my neck of the woods says, It is what it is. Its a popular post now, no matter if its tucked on the last page of the Warren report. General Health is possibly the correct title for alternative treatments now. As for this site, its one that is most popular to refer patients from alternative sites who are seeking medical or great ablation advice. It is what it is.