This has been a crazy week here at Camp Other.
I was originally going to post my usual Friday Four science column, but it may just slide to the Saturday Six or something like that.
I have something else to say now, and I'll post more science later.
This post isn't about being banned from a forum, if you were expecting to hear more about that... Yes, I was puzzled why I got banned, and so were others. It happened, I wrote about it, and then I was going to move on.
However, I can't completely move on without saying a few things about the comments I've been receiving.
Right now, what I'm hearing and seeing is that people have been asked on the forum to not even mention the name, "Camp Other".
Not to speak about it, and any attempts to discuss it will lead to the thread being closed. A request was made to PM the moderators about anything having to do with Camp Other instead.
And I'm also getting comments and reports about other people who think they've been censored, and think censorship on various groups has gotten out of hand.
Why I'm being censored now, I don't know - I consider this the hallmark of absurdity.
First banned, now censored?
This is a blog about science and social issues surrounding Lyme disease and other tickborne infections.
Mentioning this blog anywhere really shouldn't be that controversial... I don't think anything I've said anywhere online is that particularly controversial, other than occasionally I mention the somewhat-controversial-to-mainstream-medicine-IDSA-guidelines idea that Lyme disease might be a persistent, chronic infection.
But I want to say something about the people left behind, because what is happening there is controversial:
People shouldn't have to be in fear of what they say getting taken out of context, or be afraid to ask or be asked a challenging question - or be afraid, perhaps, of not saying something quite the right way using the right words.
What we need to do when people disagree, or challenge assumptions, or ask for more information is to simply respond to that: Have a dialog. Talk. Discuss.
A lot of misunderstandings that people have can be cleared up when they have a meta-discussion - which is a discussion about how we discuss things and why we discuss things the way we do.
Shutting people down, kicking them out, closing the door, and putting earplugs on doesn't make them go away. They're still out there, saying something to someone - maybe even about you - only now you can't hear them.
Even if you can't hear them and they are far away, chances are the ideas they hold dear and the values they possess may be found in the next person who comes in the door, a stranger who greets you, or a random person who shows up on an online forum.
And then you will have to deal with those same ideas, same values, and other things you may disagree with or be challenged by.
People will also have an effect on those they leave behind whenever they go away - there are always ripples in their absence, whether they left because they were banned, left of their own free will, left because their computer died, left due to poor health, or any of a number of reasons.
Because when it comes to being amongst other patients - we all ultimately share in the same suffering and want the same things. And we notice that absence.
What makes a support group what it is is the patients, more than anyone else. And the needs of patients are what is paramount: building community, research, safety, understanding, proper diagnosis and treatment, and support. And just knowing that we're reaching out to others who are going through - or have gone through - the same things we have.
Maybe how each of us express our needs for those things differs, and maybe how we hope to achieve it differs - but the bottom line is that through dialog we can discuss those differences rather than deny them, or push them away.
Censorship is not the way to go. More communication is, in my opinion. Even if it's somewhat messy and misunderstandings take place. That's what compassion and forgiveness are for - allowing mistakes and accepting apologies.
If someone is truly being egregious in their behavior on a forum, that's one thing - and I think one has to draw the line somewhere. Somewhere reasonable.
I may have only been on this one forum for a few months, but that's enough time to see how things went - and it's particularly telling how things went after I've been gone. When people voluntarily leave due to censorship and people try to leave because they want out, that's saying something about the atmosphere they're in.
I don't like it.
I want anyone who posts comments to my blog to know that I will do my best not to censor any of you and let you speak your mind. Obviously you have to follow Blogger's terms of service - I have no control over those - and I have a rule that when you're discussing personal physicians, that you do not use their name or initial (use "my doctor" or "a friend's doctor"), unless it's in relationship to something they said in the media or a published paper.
That's it. I really don't have any other rules, other than don't spam my blog or phish for information.
I think the time is ripe for more meta-discussions that I don't see anyone having, and those are the discussions about discussions which get shut down before they even start.
My main question is: Have you been censored and what can we do about censorship on patient forums?
If you are a Lyme disease patient and you want to discuss being censored or being banned online yourself, please leave a comment. You can still be Anonymous or use a username - either way, I'll post your comment after it clears my spam filter.
If you are a Lyme disease patient and you want to bring up the discussion of censorship in general - especially in what changes you'd like to see in the way discussions online are handled - please drop me a comment.
Let's open dialog up, and see what happens.
This work by Camp Other is licensed under a Creative Commons
Attribution-NonCommercial-ShareAlike 3.0 Unported License.
I haven't been banned yet from the forum of which you speak, and I don't understand why. I've been banned from every forum I've ever been on, been fired from every job I ever had, and really, I take the Groucho approach, I really wouldn't want to be a member of any club that would have me as a member.
ReplyDeleteThat being said, I agree with you, with everything you said, and I think that I would have to work really hard to be banned here.
Did you notice that after they closed the first thread about you someone opened a 2nd thread asking the Administrators to be more reasonable, and the mods immediately shut it down? Why? The suggestions there were very reasonable. Why can't members discuss what is going on on the site? What's so wrong with that?
What is wrong with these people?
That is a rhetorical question. I think we all know what is wrong with them people.
The question asked were not offensive. The thread was called something like, "Banning Members and LymeNet terms of Use."
Really, (my favorite word today), if you look at the posts, you really have to pick and choose among them for many, the vast majority, are so "out there" that they only reinforce the opinion that Lyme patients are the "wacko undesirables" of the medical world.
What the site is good for, really good for, is locating LLMDs. You really can't understate that value.
But, Man,com'on, it's a site predominately for and by women, and you men, you better check your balls at the door. My wife would have none of it. She is bimbo adverse, has the same opinion of wacko women as I have of wacko conspiracy theorists.
I know, I know, I'm not being politically correct, so ban me, alright, but I'm just telling it like it is. Feel free to try to castrate me if you want to, and good luck with that.
I say good riddance to 'em. I'm looking at them now in my rear view mirror.
Bye bye Ms LymeNet pie, drive your Chevy to the levy and ban the sky, tilt you head up, that's cute, now ask me why, will this be the day that you lie, or will this be the day that you die.
Strictly a rhetorical question, really.
You weren't banned and you don't understand why, RJ? That takes doing - keep up the good work?
ReplyDeleteI'll be honest in saying that I stopped looking at the site shortly after I left. I didn't even bother after a while, because I knew it would only aggravate me more if I saw threads I wanted to post responses to and couldn't - on anything from one where I was talking about topics I'd been researching and interested in to ones where I was helping people.
I didn't have to look directly to know what was going on, though - other people told me via messages and email.
Re "wacko undersirables": Those are your words, not mine - I don't know what behavior constitutes being wacko undersirables in your view, so you'd have to say more about that to understand your perspective.
Why do you think the site is predominately for and by women? Why do you think you have to "check your balls at the door"?
In a general way this is interesting, because I recall reading statistics some time ago which indicated men and women were about equally infected with Lyme disease. (I'll have to look for that citation again to support this.)
And yet, I have noticed that it seems the majority of patients I come across on online forums and mailing lists seem to be female - with the forums being more heavily female than the mailing lists.I actually get the sense mailing lists are more balanced, at least in terms of those who actively participate - more seems to be guys.
What's up with that? Do you think men aren't interested in the boards because they already come with a certain vibe - or is it something else?
What do you mean by your wife is "bimbo adverse"? That's a pretty strong statement to make - probably going to offend some people - so I'm trying to see the basis for it.
I'm not going to ban you - you haven't broken any rules here. Say what you're going to say and talk about this stuff. It might be politically incorrect at points, I might disagree with it - but the point is to talk about it and talk about censorship.
RJ, do you think you've ever been censored on forums, do you find yourself changing your behavior a lot when you get on them as compared to mailing lists (if you're on any)? Have you seen other people be censored, either directly or indirectly?
***1) Have you been censored and 2) what can we do about censorship on patient forums?***
ReplyDelete1. Yes
2. Nothing. Either leave the forum or help people using only P.M.s which negates the reason for a forum. :(
If this blog is to try and change human nature using reason and logic, lemme know how that works out for you. :)
RJ---- I wasn't offended at your 'bimbo' remark. And anyone who is needs to get a life. :) I think I'd like your wife. I'm bimbo adverse too.
And if this blog is going to all 'all P.C.' I probably won't be around much. Said in all fondness, but 'P.C. talk only' is a form of censorship, which I'm against except for really egregious statements or filth.
And I get to determine what is 'egregious' and 'filth' to me. But I understand that this blog owner might have different standards, and that's o.k. by me.
cave76,
ReplyDeleteThanks for your comments.
Why do you think it's leave the forum or only use PMs? I'd think there is some way to have a forum where people can discuss topics with less censorship and have it be a good place to talk and get support. I do think sometimes those things can be diametrically opposed, btw - that is, some kinds of talk are *not* support.
I'm not PC. You can say what you want. I made a general statement that I thought RJ's statement could be viewed as offensive, so I pointed that out.
I am pretty hard to offend, and after having been sick for several years with Lyme disease and coinfections, I figure that condition has done and continues to do more damage to me than what anyone says. I'm offended when I see treatment I think is unfair and unreasonable, though - and this isn't just about me - this is about everyone.
If censorship is getting in the way of people talking about important issues and making progress, that's not right.
I was banned from LymeNet after a few weeks membership and only a couple of posts. My posts were replies to a original poster in pointing out blatant factual errors in chemistry, fact checking, and general misinformation in a Townsend Letter article about Lyme disease by the felon "Professor" Robert Bradford, who had injured and defrauded Lyme patients. The article was deemed "excellent information." I was immediately attacked by a poster named "Looking" as a troll, and told I sounded like I was from LNE. I was then immediately banned without any warning.
ReplyDeleteI'd like to add that before being banned, I received PM's thanking me for my posts and not to let the attacks from rabid members stop me from posting there.
I don't know if my posts were removed because not only was I banned, but unable to view the forums any longer.
DaisyJane
Thanks for your comment, DaisyJane.
ReplyDeleteI am aware of the Robert Bradford story, and think that warning people about someone who is doing something illegal or harmful to patients is useful information to share. There are probably more and less effective ways to do so, but censoring that information outright can lead to patients being taken unfair advantage of or worse.
Why do you think you were attacked as being a troll? Reflecting on what you said, could any of it have been not what you said but how you said it? Maybe a misunderstanding of what you said?
I've noticed that there tends to be an almost immediate removal of threads where someone mentions negative press about someone - anyone - even when what is offered is from reliable and verifiable sources that anyone could find elsewhere.
And I see that as a form of censorship in its own right. If there's a good reason to not post about such things, then a meta-discussion about that seems to be in order, along the lines of, "What should we do about posting negative press about x or y topic in *general*?" without mentioning specific cases.
And if that discussion seems touchy, somehow - then filter it, maybe - as in make it members only and not open to the public for view? One of the concerns I've seen mentioned by others is to not mention certain topics because they would serve to give information to detractors, so it's made me wonder how many discussions would go on if that concern were less of an issue.
Blogger and many forum platforms allow owners to filter posts to members-only, and other groups do this. The only concern you have at that point is vetting members to see if they are genuinely patients or their allies - and that could become a gnarly mess in a short while - especially if one wishes to protect their anonymity, such as if they are a celebrity with Lyme disease.
I think the powers that be there at LN view anybody that joins the forum already having some knowledge about Lyme disease or the Lyme community with instant suspicion, and that this mentality over time gets picked up by many of the highly indoctrinated followers wanting to protect the hive. The only new LN members warmly welcomed with open arms and supported there are total newbies, just beginning to want information about their illness and Lyme disease. I think that's because the newbies are so easily brainwashed into this closed, controlled LN culture where one must be a true believer of all things the "Tincup" herself stands for and believes in, or it's some kind of sin against or sabotage of all Lyme patients everywhere.
ReplyDeleteTheir detractors have many valid points, whether or not they allow themselves to see that.
As you recently found out, there is no tolerance for the middle ground or "camp other," questioning or any kind of skepticism -- it's an all or nothing group-think, you are either with us or against us as the saying goes. The insanity is that rational, logical, factual thinking and info is censured and attacked in order to protect this controlled hive-mentality and every crazy notion, ridiculous and dangerous treatment, conspiracy, or quack is promoted and defended to the hilt.
DaisyJane
I often write with a lot of levity, try to adopt a breezy style to tickle people's funny bone if they get it. That's why some of the things in my previous post should be taken with a grain of salt and a wink of the eye.
ReplyDeleteYou made an interesting observation about how more women seem to frequent the forums, and that jibes with my experience.
You can tell the women, over there, by their user names, many times, and again by how they write and how they argue.
Women seem to be less confrontational than men, but they still try to insist that they are right, and they seem to want to have the last word.
I was watching several threads there where two women are in disagreement with a third party about some study, and they call the study majorly flawed because it was done in vitro. The other said the study was probably fake and probably funded by Big Pharma. (It was study from the University of Pittsburgh, I think, or U of PA.)
If confronted with something that conflicts with their beliefs they simply label it fake or part of The Big Conspiracy, or as in this case, try to equate in vitro with bad unreliable, science.
When these things get pointed out to them they get flustered, and keep repeating the same thing over and over, and always trying to get in the last word and end the discussion. They seem to want to win the thread.
I picked up the term "wacko undesirables" somewhere and thought it had a good ring to it. It was used,I think, to describe the way that many doctors view Lyme Patients, especially one that go by CDC guidelines, but I can imagine some of the higher priced LLMDs sharing the view and maybe even justifying their high charges. Many LLMDs start around $600 to $750 for an initial visit and $300 for each follow up visit. Some are much higher from what I've read, with initial visits being billed at $1000 to $2000.
I don't use the term as a put down of Lyme patients, but I don't appreciate it when some of us feed the perception of being way out there on the fringe. Some of the things I read on the forums make me cringe, like the thread where you were discussing chem-trails . . .ouch.
When I said my wife is bimbo averse, I meant it in the same way as saying, "He doesn't tolerate fools well"
I definately have been censured and have even censured myself, trying vry hard to pull my punches and not be so agressive. I try to gently disagree with a person because many of them get mad or hurt if you disagree.
There's one there that talks about pendulumn dowsing to find out if certain herbs will work for her! I'm not kidding. That's like asking a quji board, isn't it.
I'd like to hang around longer but I gots to run before it's too dark for our walk.
I'll check back later.
DaisyJane,
ReplyDeleteIs that always true, or does it matter how someone goes about discussing the knowledge they have? If anyone cops an attitude or has a sense of superiority, that might be enough to turn some people off and lead to complaints - I can easily see that when it's supposed to be a place of support (see my comment upstream, about how not all discussion is support, and some of it is diametrically opposed to that aim).
Being polite while you disagree may be more likely to keeping you on as an active participant, but I'm not sure how far the definition of "disagree" applies here. I know I challenged people on what they posted, and disagreed with the evidence they provided. I may characterize the evidence in some fashion.
I try not to characterize the poster, because I don't know everything about them and online communication has been shown to be pretty flawed for communicating tone and attitude... only when someone says something so obviously insulting in an ad hominem attack does it become clear what someone else is like - at least in that moment.
From what I noticed, there were some posters who posted numerous citations and references - with varying degrees of reliability of evidence - and they all had different perspectives or personalities. It's not clear to me on which criteria people who post citations and references get to stick around and which are shown the door.
Why would you say they're being brainwashed by this one person? I'd think anyone could decide to accept or reject what they read on their own - unless I'm missing something.
I don't understand why there can't be tolerance for the middle ground?
It's about looking for the truth, not what anyone else has told you - and about going directly to the source for information. It's about asking questions about something from many different angles and drawing your own conclusions. And for me, it's about seeing the subtle nature of facts and nuance that gets left behind when I get emotionally engaged in something - passionate about it because it *is* all about my life being on the line, and how it changed overnight due to illness.
It's not about this group or that for me. This forum. This publication. It's something beyond that.
Well, I must have pissed off somebody, broke some written or unwritten rule, to have been banned and blocked, right Camp Other??? Since I can't cut and past my posts from there, all I can say in my defense is that I have never been banned from any other group or internet forum Lyme or otherwise, fired from a job, or lack for long term friendships and close family relationships, LOL. In fact, I was voted Nicest and Best Personality in my high school graduating class for the yearbook. Yay me, true story. But I guess you can't please all the people all the time.
ReplyDeleteAs far as "always" goes, I thought we were having a general, 'your thoughts' type discussion. I try to stay away from the words always/only/never when it comes to human behavior. But I have a sense that some LN forum members complaints weigh more than others.
"Why would you say they're being brainwashed by this one person? I'd think anyone could decide to accept or reject what they read on their own - unless I'm missing something."
Because the "blacksheep" and "troublemakers" are culled from the herd like you and many others in the bannings of people who express their rejections and lack of blind acceptance on the forum. Also the threat of banning of those that support the banned, even mention their names, the censorship, the deleted threads. Over time the end result is a climate of opinion that permeates and is nurtured by who and what is allowed to remain and who is a "good soldier" for the LN cause.
DaisyJane
RJ,
ReplyDeleteYou said, "Women seem to be less confrontational than men, but they still try to insist that they are right, and they seem to want to have the last word."
I've seen that, but I've also seen women who are equally 'confrontational' as men are, right from the start. My experience may be different from other people because of the line of work I've been in - and women who enter research and the sciences or law or education often have to be more direct and 'confrontational' in order to do their job.
I've seen *many people* want to get the last word in, in an argument. I don't know if men or women have the last word on that.
Continuing... You said, "If confronted with something that conflicts with their beliefs they simply label it fake or part of The Big Conspiracy, or as in this case, try to equate in vitro with bad unreliable, science."
If they say it's fake, I think they need evidence it is, and if they say there is a Big Conspiracy, they need evidence of that, too. Evidence found in vitro is just that - evidence found in vitro, found in that one particular study, by that one particular group of researchers. If one doesn't like that particular group of researchers or thinks they have conflicts of interest that interfere with producing unbiased research, then that's something to include and present in one's discussion - even better, show someone else without those conflicts and biases who did the same research and had the same results. Or different ones.
Science and the scientific method has brought us a lot of advances and improvements in our quality of life. At the same time, a lot of people distrust it because they've seen the conflict of interests, the bias, and studies like John Ioanndis' research on evidence-based medicine. The truth lies somewhere inbetween, though - just because there is some research which lays bare these conflicts and biases, doesn't mean it's time to throw *all* science out and the scientific method. That's like throwing out aspirin and antibiotics because Vioxx was a problem.
(more later, I need a break...)
RJ, responding more to what you've written above:
ReplyDelete"I picked up the term "wacko undesirables" somewhere and thought it had a good ring to it. It was used,I think, to describe the way that many doctors view Lyme Patients, especially one that go by CDC guidelines [...]"
When do you usually use the term, "wacko undesirables"? In private, between friends - or openly on mailing lists and forums?
Do you think use of such terms should be censored or kept out of online forums - or that they're acceptable?
Continuing you said, "... but I can imagine some of the higher priced LLMDs sharing the view and maybe even justifying their high charges. Many LLMDs start around $600 to $750 for an initial visit and $300 for each follow up visit. Some are much higher from what I've read, with initial visits being billed at $1000 to $2000. "
I don't know who sets the prices on appointments for medical services and why they are what they are - I know that without insurance, specialists can run $900 an hour and more in fields like neurology. Anesthesiology is the most lucrative medical profession one can be in - but consider the risks, and consider the potential malpractice suits there. It is a high stress job. I don't know if I could do it.
Doctors in general have to deal with a lot of things outside of doctoring that make their jobs difficult.
You said, "I don't use the term as a put down of Lyme patients, but I don't appreciate it when some of us feed the perception of being way out there on the fringe. Some of the things I read on the forums make me cringe, like the thread where you were discussing chem-trails . . .ouch."
I don't like feeding negative perceptions about anyone if I can help it - unfortunately, sometimes someone does something that genuinely *is* wrong and there is evidence for it, and at that point the fact of it has to be mentioned. Even when I don't like it.
Someone posted about the history of patient abuses in clinical trials over the past 100 years and that is something I do think needs to be written about - even as I support clinical trial research. Uncomfortable truths need to be discussed... I think they can be discussed without being conspiratorial about them, though.
Regarding the chemtrails? Same thing. I think people can discuss the possibility of anything without having to be conspiratorial about them. Speculation is fine. It's when one starts treading into the area where speculation = fact, and 'this is really the way the world is' where it begins pushing my ability to discuss the topic.
I just want to add here that I think my LLMD has been worth every penny so far - s/he has been good at answering my questions, keeps up with research, and has been supportive of me.
ReplyDeleteI think the care I've received has been very beneficial, and I don't think I would be able to type this and think well enough to write all this without help. I really don't want to think where I'd be right now if I hadn't had treatment... I only wish I knew what the deal was with my remaining symptoms. It's a puzzle.
The last thing I have to say about LN, I promise:
ReplyDeleteStarting a month or so ago I started realizing that my time spent on LN was amounting to very little -- no new information learned, little good advice going around, etc. etc. and I feel this culminated with your whole banning episode. I just discovered LNE and have found it very amusing to read the back and forth between what I assume are the proprietors of the two sites. So much hating going on there... they should just go about it all east coast vs. west coast style and make a 'dis album.
The folks at LNE seem very smart and level-headed, but their disdain for ILADS makes me a bit uneasy. If it wasn't for ILADS (and me getting lucky in seeing a doctor for my "CFS" who was educated about chronic Lyme) I would most likely be on Valcyte or Rituximab, without giving a thought to Bb or Babesia. (Although who knows, TBI treatment might not make me better, we'll have to wait and see.)
The censorship really becomes apparent when you browse the LNE archives and find some of the reports there that have been censored from LN because they are defamatory of the blessed LLMDs. Of course libel should not be tolerated, but when someone presents proof along with their claim, or if that person is only linking to a news article outside of the forum, I for one would like to read what they have to say without being "protected" by some moderator who wants to control flow the information.
-Adam
Hey Adam,
ReplyDeleteThanks for your comment... This is probably my last response for the night because it's late here and I need rest...
More tomorrow, maybe - provided I don't get dragged away from my computer from well-meaning people who are concerned about the drool forming in the corners of my mouth.
Did I say it was late?
I'm sorry your time on LN wasn't working for you. I think some of the discussions going on were interesting, and I would have liked to continue those. I admit I don't relate to or agree with everything that was said there, but that's true of every site I've been on.
I have seen what's going on at LNE. I like their science forum, and the top-level Lyme news section and information is good. There are a lot of intelligent people, and posts tend to be more on-topic and ramble less - the latter mostly due to how its moderated from what I see thus far... but I'm fairly new to it so this is just a first impression.
I suspect that just by posting there, some people think I committed an act of heresy. "How could CO go there, knowing LNE's attitude towards ILADS?!?" might have been whispered at one point.
Well, that being what it is - see it as you see it so far. I have the same issue you have with them about their discussions about ILADS - there's a lot of negativity there about them.
I saw a lot on their dissection of the guidelines - I have yet to see if they've dissected *both* sets of guidelines - that would interest me if they have. So far my response to that has been, "How would you rewrite these guidelines?".
Maybe they can do a better job? I don't know. It's an interesting challenge if anyone decides to take it up... and it's easier to criticize something than make something new.
Personally, I've had immense help through ILADS and think my LLMD saved my life. I, too, would probably be on other drugs that wouldn't work for me if I didn't get treated for coinfections.
(more below)
(To Adam - continued)
ReplyDeleteSometimes I think a coinfection is what has caused many of my problems, but proving that is not easy. I can only speculate about it? Ninety percent of my problem is not knowing what exactly is still wrong with me; ten percent of it is not knowing how to treat; 9 out of 10 statistics are made up. =) Something like that.
Anyway, you would think that my position in this would lead to my rejecting LNE. It doesn't, though.
Instead, I'm trying to understand where they're coming from, because the viewpoint *is* so different. The cultures and health care systems in the EU are different, so I expect the patient experience is different for them as well. How do they find treatment, and where? What are they willing to try? It's good to get another perspective. I know content doesn't totally apply to me - it's named LNE for a reason.
Just because I disagree with some things that people say about a certain topic doesn't mean I disagree with them about everything else. That's just how things are for me... I try to learn what I can wherever I go, and try not to shy away from things I may disagree with. I might still learn something new I benefit from even if I don't change my original position.
You said, "Of course libel should not be tolerated, but when someone presents proof along with their claim, or if that person is only linking to a news article outside of the forum, I for one would like to read what they have to say without being "protected" by some moderator who wants to control flow the information."
I agree with you, Adam. I think if it's officially in the news and there is proof to back a claim against any doctor - then one must carefully scrutinize the reports and make a wise decision based on it. Patients need to watch each other's backs and keep each other informed - I think this is a big part of offering support to one another.
The control of information was originally put there to protect both doctors and patients - it's not that it's inherently a bad idea, I think the intent going in was good. But the issue then becomes figuring out how to protect patients when something bad happens - they need to be informed.
When it gets down to it, one has to look at the stack of cards in front of you: Protect the patient's access to treatment; protect the doctors so there are more doctors available for the patients; pass the legislation to protect the doctors so the patients will have more access to care. If the link fails at any point, patients have fewer doctors to treat them.
And the thing is, those are only three cards. There are more.
If we had more research that proved persistence first - then if it were proved that longer term courses of antimicrobials were needed, we wouldn't need legislation to protect anyone. With solid evidence, it would have to be acknowledged the standard of care widely used needs to change and everyone would be approaching tickborne illnesses using a different model.
There are a number of possibilities here. I think it's important to consider them, and look for more than one path that takes people to the same goal. People are trying to do all this, bit by bit. It's a huge task, though... How do you direct your energy? How do you prioritize it all? Not easy.
It's Saturday, and everyone's comments have given me a lot of food for thought - thank you for participating. I'm not sure where to take this discussion next - some of you may have some ideas of topics you'd like to see discussed more and/or take specific ideas from this thread and talk about those.
ReplyDeleteGiven it's the weekend, I'm going to try not to spend all my time here and let people grab me by the arm and take me out of the house for little while... I'll check back later for any more comments.
Thank you for the long reply; I'm amazed at the time you take to reply to all the comments. I think writing is tedious and hard for most of us, so your thoroughness is very impressive.
ReplyDeleteAnd yes, I fully support getting out of the house and getting your mind off of this shit if you can. it's a bit harder to do so when you don't leave the house, but English football and shitty cop dramas have helped me much more than the therapist that my folks wanted me to see.
As for topics I'd like to see discussed, I emailed you a couple ideas. Obviously no rush, and I'm happy to read whatever you decide to write about.
Cheers,
Adam
Hello Camp Other
ReplyDeleteDid my email to you go to your spam box?
Well just in case it did, here I am weighing in with my two cents!
Please know that I posted to the original thread in which your being banned was discussed...that I have found you to be very gentle, that if any rule was broken (I can't see evidence of any, FYI) that it must have been inadvertent especially coming from you, etc.
I am the one who had the nerve to mention that dreaded topic, chemtrails and I am so sorry that it ended in the fiasco which resulted in your being banned.
Perhaps you prefer to close the topic about the chemtrails and as I have no intent of diverting the community from the true purpose here----lyme recovery----I will not bring forward any links or further explanation about what informed my thinking here, unless you ask me to.
Suffice it to say, however, that I myself thought this was conspiracy theory until I researched it further. I can fully understand any skeptical reactions and am not even the slightest bit offended or taken aback.
Further I understand the concern that we lyme patients not be regarded as conspiracy theorists.
That said, at the same time I believe we must expose crimes for just what they are, otherwise they just plain continue.
Quickly and then let me leave this topic behind, unless of course you ask for more links and info which I am happy to provide, but only if you want it.
I did mention legislation drafted by US Representative Kucinich about this, and testimony by former FBI agent Ted Gunderson, to reflect the reality of the matters at hand. But I did not provide links and that may have been a mistake on my part.
The one link I did provide also had some questionable credentials even for my own satisfaction fyi, but based on "talks" with people on the web who had been exposed and symptomatic because of chemtrail spraying, I also believed the statements on that site. More explanations later and again only if you ask.
I just wanted to say that I regret that I did not peek in on the thread later to see your requests for further info and did not mean to ignore that all too reasonable request.
Enough about that.
Above and beyond all else, I truly am just sooooo sorry that you were so unreasonably banned and without any explanation. This is wrong. And any moderator (whom I really like personally, by the way but can still respectfully disagree with) who says that this should not be discussed, is wrong. "OFf with your head!" "Why?" "Don't you even ask!" Well I think the message is obvious that this just can't work out to the best of all involved. Good management means good communication, not lockdowns on truths and human needs being expressed.
I also think that they have no business peeking at your site and censoring what you say here. That was wrong of them and if they were banning you for having said something here about what occurred there, so long as it was/is accurate and not defamatory, then I see no reason for them to react the way they did.
Okay maybe they were concerned about your mentioning that someone said "I just don't care" but that was not what I think this person truly meant, FYI. I think they said "I am tired!" Misunderstandings happen, you know.
I also think that one person was right in pointing out that they are doing us a service on that other forum (just as you are doing here) and we need to be grateful instead of demanding. True.
But I still don't see that as an excuse for violating boundaries. And that is just what occurred, at least in my eyes.
If they want to ban me for saying that right here, then let them.
Again I think you have been very kind and gentle to work with, I respect your scientifically inquiring brain, and want to say thank you and kuddos for all that you are doing!
Sincerely, Chiquita Incognita
Thanks, Adam, for your comments so far and compliment. It's good to see discussion on this and I think your comments on different forums has been useful in looking at the bigger picture of how forums for patients differ in emphasis and moderation.
ReplyDeleteIt is physically demanding to write here after a while. I don't get much swelling or pain in my fingers so far, I'm finding - mainly my thumbs, wrists, and elbows get the brunt of it from typing, but if I'm tensing up or don't have much back support, the shoulders begin hating me, too.
In terms of fatigue, that too becomes a problem. The later it is or the longer I've been reading and writing in one big block of time, the harder it is for me to continue concentrating. I think my last round of treatment helped brain fog a lot - otherwise there would be no blog - but I still suffer from a number of symptoms that prevent me from living what I'd call a normal life.
So I do have to take breaks. My friends insist on it after a while, anyway... so don't expect me to be glued to the computer all the time.
I'm all for English football and shitty cop dramas, especially if they help more than therapy - cheaper and a lot more fun. Are you a Man United fan? I had a friend introduce me to Reno 911 and that is... well, not a shitty cop drama, but at points it was so wrong it made me laugh.
Chiquita,
ReplyDeleteThanks for your message of support. I'll check my email in a little while - I have been pretty busy between replying to comments I've been getting on the blog (some sent with a note not to post them but just to read - guess people decided that was better than email) and things I have to deal with in real life - so I'm not always getting around to my email... Still didn't get anything explaining what happened, in case you wondered.
I don't want to get into the entire chemtrails issue in great detail right now. I'll say this much and may revisit more later:
I didn't see enough evidence to support it while we were on that thread, and was looking into it more while researching many other issues discussed on the board. I found some of the material you mention about Kucinich and government documents, but still need to know more.
Looking at the speculation people have made (not your specific speculation, per se - but that of many interested in chemtrails), there are many factors to consider, such as how much atmospheric and ground pollution we can attribute to pollution from other sources including winds carrying chemicals from countries with less industrial environmental regulation - and evidence that bacteria is already on plants and in soil which is being picked up and widely distributed. I don't have to look long or far to see evidence the planet is already being polluted and our health is being affected by it.
Also, I want the answer to a more general question: If what people speculate is true, why would people want to pollute the same water and air that politicians, celebrities, doctors, EMTs, professors, soldiers, and others are drinking and breathing? Those engaged in such experiments could not avoid being victims themselves.
(more in another comment)
Chiquita wrote:
ReplyDelete"Well I think the message is obvious that this just can't work out to the best of all involved. Good management means good communication, not lockdowns on truths and human needs being expressed."
I agree. Somehow there has to be a way to talk about things we are passionate about and may even disagree on, without having to be censored. The value of moderation, to me, comes from keeping posts out which are off topic, obscenity, violations of an ISP's terms of service and regional laws, ad hominem attacks, direct threats on people or their property, posting addresses and phone numbers that could be used for phishing attacks, and spam. I think the role of moderation is to keep the board safe as well as focused on topics people want to discuss.
You said, "I also think that they have no business peeking at your site and censoring what you say here. That was wrong of them and if they were banning you for having said something here about what occurred there, so long as it was/is accurate and not defamatory, then I see no reason for them to react the way they did."
The censoring of discussing this blog does strike me as absurd on top of what's already happened.
I try to be accurate in what I write and admit when I don't know nothing or I'm learning more. I also do my best to speak my mind without hurting anyone's feelings, and if I have at any point, it would be good to know so I could apologize to them.
That said, I don't apologize for disagreeing with someone's view. I disagree on occasion. It doesn't mean I don't like someone - it just means I disagree. And I might find I disagree with someone on some topics and agree with them on others. Doesn't mean we can't have interesting conversations or be friends, or offer support to one another.
You said,
"Okay maybe they were concerned about your mentioning that someone said "I just don't care" but that was not what I think this person truly meant, FYI. I think they said "I am tired!" Misunderstandings happen, you know. "
I don't know? But you can't sort out a misunderstanding unless you work on sorting it out. Which is the point I was making in this blog entry above... More communication is needed, not less. I'm that afraid sometimes in an effort to keep people safe, one can be quick to want to silence any disagreement or head off a thread where people are passionate and heated about a topic.
You said,
"I also think that one person was right in pointing out that they are doing us a service on that other forum (just as you are doing here) and we need to be grateful instead of demanding. True."
They are, and I value the service they provide in helping people get references for doctors, educating people on activism and bills and organizations, supporting people who are new and scared by it all, and a number of other things. I've said as much earlier.
The board itself wouldn't exist if patients weren't there to participate in it. If a number of people want to discuss something and are courteous to one another even if they disagree - but the entire discussion is shut down - how does it serve you? Here is where I begin to be concerned, and continue to be even if I can never participate there again.
(more)
To Chiquita:
ReplyDeleteYou said,
"But I still don't see that as an excuse for violating boundaries. And that is just what occurred, at least in my eyes."
I thought what happened wasn't fair and at the very least, discussion was needed beforehand. I wouldn't be having this exchange with you at all if things happened differently. Two entries wouldn't be on this blog if things happened differently.
You said, "If they want to ban me for saying that right here, then let them."
I hope you aren't banned. If you are, then your basic freedom of expression is being affected.
You said, "Again I think you have been very kind and gentle to work with, I respect your scientifically inquiring brain, and want to say thank you and kuddos for all that you are doing!"
Thanks, Chiquita. All I want sometimes is to ask some hard questions and find answers - and get back to focusing on science and research, because I think that there is where I may find more answers that help me and other patients.
Hi Camp Other!
ReplyDeleteThank you for graciously taking the time to read all so thoroughly (as usual) and respond in such a thoughtful and detailed way (again as usual). Kuddos and appreciation!
I agree with you that the solution is open talking and not banning or censorship.
I can understand on the one hand that some things are confidential and have to be treated that way, and other things just plain affect the whole community and should be discussed openly.
I pointed this out in a pm to one of the moderators, who responded in exactly the same way to my pm as to the open threads:
This is not open for discussion.
I am annoyed by this approach and find it irritating and wrong.
I let this person know that several people have pm'd me saying that they are planning to leave the forum, and that I myself have thought of it too.
It is just plain wrong to inflict what would appear to be an injustice, expect others not to be concerned that they too are walking on eggshells, and not to be able to say a word about it.
I think this approach is a way of people avoiding responsibility.
If it threatens the ego to be responsible for doing something wrong, if it makes us deeply uncomfortable to be wrong, then somehow, somewhere we need to either silence the dissent or to blame others for our own wrongs. Even if that doesnt' make any logical sense.
Or even do both. Silence dissent, blame others for what we ourselves did wrong.
That is at least my perception of what is happening here.
As the moderator pointed out, I don't know everything that happened. True.
I also responded to her in a pm that I can't imagine you Camp Other being in some weird "Other Camp" and I repeated that I have seen you be nothing but very gentle and very kind.
I perceive you as having absolutely very good character, so far.
I hope this thought about dealing with self-responsibility (on the part of the moderators) and their discomfort (perhaps? I am guessing here, just wondering) with this process, is helpful to you.
It's much easier to point fingers at others and to shut the doors of conversation than it is to face oneself, Sometimes.
Very best wishes to you, Chiquita Incognita
PS no further mention hereafter. But I did want to address your questions about the chemtrails. I hope I am not breaking any barriers, on the one hand I understand that you prefer not to talk about this and yet I don't want to ignore your questions.
ReplyDeleteI do not perceive this as censorship, I understand that you are concerned about lyme patients not being regarded as conspiracy theorists. A very valid concern, even if my own private thought is that exposing crimes is critically important. Hereafter, there is no need for this topic to come up again.
I linked one rather weak source because it was the only one that I could find which listed the ingredients in the trails. I myself asked the question: This person has a PhD. In WHAT? And while Mayan spirituality is a valid path which "speaks" to many people, it doesn't "Speak" to me personally, even if it may be a valid path for many. And I would have preferred a source that clearly identified if this PhD was in...environmental chemistry, etc.....
The reason why I linked it however, was because the information about spray ingredients was not available elsewhere. Further, and very significantly, I had "talked" online with people who yes, saw the trails and X's in the sky and thereafter saw fish dying and themselves became symptomatic...with exactly the same illnesses that had been listed on this site, and based on the long list of noxious items said to be confirmed in the chemtrail sprays by laboratory analysis. This was why I believed the source.
If I had seen this link just out of the blue and out of context, I want you to know that I too would have questioned it and that I can understand if anybody else did.
I also would not have researched this to begin with, were it not for the testimony of *several* people I "conversed" with, online.
As for politicians themselves being hurt, you had better believe it. I don't understand the craziness of this either. I had read that this was a way to test and see if chemical warfare would work in other countries, but why this continues here on US soil doesn't make any sense to me either. I asked the same questions you did, and still do.
If this all turns out to be true, and my research/"talks" with others leads me to believe that alas it is, I think this may have *a lot!* to do with lyme if it is contained in the sprays. But it may or may not be, and I don't know for a fact whether or not it is. So that is just speculation. And could admittedly be, yes, one more conspiracy theory (even if I now am convinced that the chemtrail sprays themselves are not just theory).
I think it' s hard for us all to believe that people are capable of certain things, so we don't believe it and in fact, we ridicule it. A way to ward off the painful reality. Alas, people are capable of evil, even if also capable of great good.
Enough about this, I will hereby wrap this up. Again I understand why you prefer not to go into this at length anymore, but also since you asked a few questions in your messages above, I wanted to address them. No need to bring this up again in the future.
Thank you for such motivated research and for taking all the time and care.
I will follow this site with interest and look forward to some fruitful conversations with you and other readers here, in the future.
And yes, good friends can and must have different opinions. That is how friendships are made and intellectual conversations are only what makes life more interesting, stimulating thought itself! And that is only a good thing.
Blessed be and thanks for all that you are doing.
Wiht best wishes, Chiquita Incognita ps please keep my email private, I was not necessarily wanting it to be posted. No hurry, take your time getting to it.
Hi Chiquita, and thanks for your comments.
ReplyDelete"It is just plain wrong to inflict what would appear to be an injustice, expect others not to be concerned that they too are walking on eggshells, and not to be able to say a word about it."
I agree with you. And I don't want to go back now, even if offered the opportunity. I'd rather write here at this point and other places where I don't have to worry about such things.
You said, "If it threatens the ego to be responsible for doing something wrong, if it makes us deeply uncomfortable to be wrong, then somehow, somewhere we need to either silence the dissent or to blame others for our own wrongs. Even if that doesnt' make any logical sense."
It doesn't make logical sense. That's the thing. I can accept being wrong, or say I don't know everything. I'll survive, it's not the end of the world if I'm wrong. But if I do something wrong, then tell me, and give me the opportunity to address the wrong.
In normal, face-to-face communications, when I've done something wrong and someone calls me on it, I own up to it, and we talk about it, and if it's clear I messed up, I apologize. If there was a misunderstanding and they took me the wrong way, then they apologize. And then, we move on. No hard feelings.
I realize the internet isn't the same as face-to-face communication, but at the same time, guess I thought when dealing with support groups it would be closer to it.
"As the moderator pointed out, I don't know everything that happened. True."
Heck, *I* don't know everything that happened, because there was no dialog about it. I've heard all kinds of rumors by now. I've guessed at my own situation. I've heard things about others' situations. I question those too, but under anonymity people have the courage to say a lot of things they otherwise wouldn't say. So I have to give them some weight, and try to find evidence elsewhere to back up their statements. It's not always easy.
You said, "I also responded to her in a pm that I can't imagine you Camp Other being in some weird "Other Camp" and I repeated that I have seen you be nothing but very gentle and very kind."
I try to be kind. But I'm not perfect, and I get angry, frustrated, and disappointed just like everyone else. When I am, I hope I'm not being an idiot, and if I am, that someone will tell me about it - otherwise other people might be walking around me as if they're on broken glass just like others are elsewhere now.
(more)
(To Chiquita - more)
ReplyDeleteYou said, "I perceive you as having absolutely very good character, so far.
I hope this thought about dealing with self-responsibility (on the part of the moderators) and their discomfort (perhaps? I am guessing here, just wondering) with this process, is helpful to you."
Thanks. I try to be the good guy.
You bring up a good point about self-responsibility here. I think that we're adults, and to a large degree if we have disagreements, we can sort them out on our own. If the way a difference of opinion is being handled online so far isn't involving ad hominem attacks or threats or any of a number of things which most people could point to and say, 'That's wrong', then let the discussion continue. I have faith that people will be able to sort things out more often than not - even if the end point is agreeing to disagree.
I've had more open conversations here in the past couple of days and my blog didn't melt down and blow up. It can be done. In defense of anyone anywhere holding down a job as a moderator, I think that the bigger the group is, the harder it is to deal with the *potential* of things going poorly, and it's probably easier to moderate smaller groups of people.
I think, though, that the difficulty of working with a large group can be overcome by having a fair and consistent policy and enforcing it equally for everyone. I don't get the sense that what was happening was fair or consistent, nor equally applied, if someone could post, "Chicken little, chicken little, the sky is falling!" on our conspiracy theory thread and that was okay, but my statements that I thought people weren't supplying sound evidence to support their theory was somehow worse. In someone else's shoes, I know what I'd find more insulting and what I'd think was more about mocking me.
Moving on to Chiquita's comments on chemtrails issue...
ReplyDelete"I do not perceive this as censorship, I understand that you are concerned about lyme patients not being regarded as conspiracy theorists. A very valid concern, even if my own private thought is that exposing crimes is critically important. Hereafter, there is no need for this topic to come up again."
I am very concerned about it. And you're right, I don't want to censor anyone on topics they wish to discuss. I just hope for more awareness on the topic of how Lyme patients can be perceived by the media and the greater general public, and if patients have some sort of stereotype or stereotypes which are not helping make our case.
Discussing conspiracy theories is not really even the concern - discussing is fine. Believing in them and encouraging others in that belief is where it begins to get shaky for me - especially if there is limited evidence, or the evidence that is supplied isn't verifiable and can't be validated.
I can see and understand where the belief comes from, when the IDSA guidelines panel for Lyme disease seems to have it in for chronic Lyme disease patients, and many mainstream doctors seem reluctant to discuss Lyme disease and miss or are slow to diagnose other tickborne infections. My thoughts on this are a bit complex, and my general thoughts are that the guidelines panel *does* have conflicts of interest and bias, and that mainstream doctors often have their hands tied.
Anyway, because of these conflicts and biases, my trust factor is lower, too - as it is for most patients I've talked to. However, I still have to take everything I read with a grain of salt until I've read enough and observed enough that the evidence is pretty strong if not overwhelming. This is how things roll with me.
(For Chiquita - more)
ReplyDeleteYou said, "The reason why I linked it however, was because the information about spray ingredients was not available elsewhere. Further, and very significantly, I had "talked" online with people who yes, saw the trails and X's in the sky and thereafter saw fish dying and themselves became symptomatic...with exactly the same illnesses that had been listed on this site, and based on the long list of noxious items said to be confirmed in the chemtrail sprays by laboratory analysis. This was why I believed the source."
Yes, someone posted this list of chemicals, but where did they get it from? How do you know it was a legitimate list from an actual study - or if they made it up? See, without further references with a real name attached I can look up, I don't know. And that's information I'd want to have. Anyone can post a list of chemicals online, so from here it's harder to verify what's true and what's not.
I hear what you're saying about other people telling you they said they got sick after they witnessed someone spraying near their house. That is disturbing to hear. It would catch my attention, too, and I hope whoever they are, they're doing better. If someone is doing something that makes people sick - regardless of intent, it requires further investigation.
At the same time, I can't be sure that the conclusions people have drawn are correct... One of the sites someone posted that I only just began to look at mentioned that scientists were doing atmospheric research that affected cloud cover. This confirmed something mentioned in the Discovery channel episodes I posted. The thought was that the particulate testing technology they were doing *might* have made some people sick, and it was unintentional.
I don't know enough yet, so I can't say this is the case. So far I see the evidence as being against intentional harm, and I'm mixed on it happening with unintentional harm. I find the idea of accidental polluting more plausible than the idea that there is a deliberate attempt to experiment and kill people by polluting the sky.
There are also already a lot of things that are polluting the earth and skies that require attention which *are* proven: pollution from cars, industrial pollution from factories, pesticide spraying, landfill waste, chemical waste, radioactive waste, and so on - and I've decided to put my energy (where I can) into reducing pollution from these sources *because* they're already proven.
Okay Chiquita, this is my last set of comments on this issue for a while, because I'm tired and because I want to move on to other topics:
ReplyDeleteYou said, "If this all turns out to be true, and my research/"talks" with others leads me to believe that alas it is, I think this may have *a lot!* to do with lyme if it is contained in the sprays. But it may or may not be, and I don't know for a fact whether or not it is. So that is just speculation. And could admittedly be, yes, one more conspiracy theory (even if I now am convinced that the chemtrail sprays themselves are not just theory)."
Why put Lyme in these sprays when ticks already contain it? And again, this all ties in to intent: What *intent* would people have for putting Lyme Borrelia in such spray?
Even if you think there's testing of sprays going on, why not do it with experimental animals in enclosed spaces in labs?
What I do know is we're already up against enough just coming across ticks and Borrelia the normal way. In other words: ticks already suck, in and of themselves.
The ticks have been on this planet for a very long time and Borrelia with them, and because of our changing climate, ticks are breeding longer and earlier in the season, and more animals and people are getting bit. Changes in our landscape have increased deer and rodent populations and bird migration patterns have meant more reservoir hosts for ticks in locations they weren't before.
To add to knowledge of this, we really don't know how bad things are. Where all the pockets of endemic infection are. There have been fewer epidemiologists working in the field, more unskilled ones having to learn on the job, and fewer higher-degreed trained epidemiologists working. Their budgets have been cut during the past decade.
Surveillance has gone down even as case numbers for people with Lyme disease and other tickborne infections have gone up. Most people - including scientists - agree more cases of these illnesses go undiagnosed and uncounted by the CDC every year.
There aren't enough people doing the research that would give us a picture closer to reality. All I do know is that the problem is bigger than many people realize and I am one of the walking, hobbling wounded.
I apply Occam's Razor here - the simplest explanation for something is probably the most likely one to be true.
On conspiracy theories in general: As one human being, I can't be investigating everything or address every theory there is. Just exploring one of these theories in depth could be someone's full time job and there's only one of me to go around. Which of these theories do you choose to focus your time on - conspiracy theories about the chemtrails, or mind-altering drugs, experimental spy probes, ufos, underground bunkers in Nevada, one small group of people who run the world? The list goes on.
You have to decide for yourself what is worth your attention or not, and what is a conspiracy theory or not. When it boils down to it for me, I'm going to focus on that which affects me most personally first and is proven. What makes a conspiracy theory a point of interest for others is that there *is* a shred of possibility in it, and with curiosity, people pursue it. But it won't pass over to true theory until there is significant evidence.
I've had to make my own choice as to where to put my energy, and right now that's on researching Borrelia and tickborne infections, taking care of my health, caring for those close to me, and around that - if I actually have the energy and am healthy enough - doing what I can to make things better for more people. Sometimes managing my own health really is the one and only thing I can do - and when that happens, everything else gets taken down several notches in priority. That's just how it is.
Permission to address Adam?
ReplyDeleteO.K.
You said:
****The folks at LNE seem very smart and level-headed, but their disdain for ILADS makes me a bit uneasy.****
The owner of that site is very smart. Level-headed? Not so sure.
LNE's distain for ILADS is understandable from certain points of view. I would have 'gone to the mat' defending ILADS many years ago when finding an LLMD (ILADS member) saved my life.
Now, years later, both the term llmd and ilads have lost their cachet for me. It's been watered down by too many non-science oriented members. I'd name some of them here, but C.O. might not approve.
C.O.said (of LNE)
***I have seen what's going on at LNE. I like their science forum, and the top-level Lyme news section and information is good. There are a lot of intelligent people, and posts tend to be more on-topic and ramble less - the latter mostly due to how its moderated from what I see thus far... but I'm fairly new to it so this is just a first impression.*****
Yes, the earlier LNE was very good with lots of science 'going on'. (Although most of the science was 'just' pubmed abstracts or articles, mostly posted by a very nice woman) But some of them were discussed in a very civilized way. C.O. would have really enjoyed it.
The admin saw to it that topics weren't allowed to stray.
Then Sir Real entered the fray. (He later became Spanky) He just loved to argue and another member also loved to 'argue'/discuss. The other member got banned, but Spanky stayed on. Go figure. Especially considering that the admin did not encourage people changing their 'names' there.
One woman in particular still posts there---- Claudia. You'd enjoy her posts also.
But now LNE is just a very faint shadow of what it used to be. I can't say what caused it to decline but it did occur about the same time me and another woman got banned. (!) Chicken or the egg.
Right now, LNE is not where I'd send a newbie looking for information. (Their initial posts are barely acknowledged, if even that.)
And if it's pub med articles you want----- well, pubmed is still operating.
cave76,
ReplyDeleteI'm going to respond to a few things you've said here until Adam shows up...
It *does* seem like fewer people have been posting more regularly about science lately than they used to... comments and posts under Science haven't been discussed in a long time. I'm still enjoying reading older posts a lot - you weren't wrong about me.
I'm not anti-ILADS. I just wrote that in a newer post. I think ILADS needs to change a few things - rewrite their guidelines and perhaps in doing so address the criticisms LNE had of them - that could only make the argument stronger against the IDSA's guidelines. I've also heard that being a member of ILADS and being an ILADS *doctor* are two different things, which might lead to the wrong impression... I don't know if that's part of your issue with "non-science oriented members"? You'd have to explain your position there, and if there are references you can point to, please do - names are okay as long as you post their own words in the media about them and why you agree or disagree with what's written.
I've got pubmed and oxford journal publications sitting here piling up everywhere. What I don't have are more people who seem to want to talk about them... and yet, understanding them is a key to getting more information and getting better treatment - if not a cure.
Cave76, thanks for the the comments. You may be right about some of the attitudes at LNE. Again, it's the same syndrome of overcompensating, in this case slamming alternative treatments when not all alternative methods should be seen on the same level.
ReplyDeleteSorry for not citing sources here, but I'm trying to not get very deep into the issues today. (I'm sitting here watching football right now actually, and Camp, to answer your earlier question: anyone BUT Manchester United!)
I'm not very familiar with the politics of the ILADS or how one becomes an "ILADS doctor", but I think one of the reasons that they're seen as outliers in the Infectious Diseases field is because they aren't as selective as they could be with their membership. I would really hope that no "ILADS doctors" peddle rife machines, colloidal silver, or recommend Salt/C to their patients, but that doesn't seem to be the case.
I think that ILADS needs to firmly state that they do not support these alternative treatments except in the case of antibiotic intolerance or failure.
And thanks for the history on LNE. Yes, I would not send a newbie there. Unfortunately, I still think the best place to send them would be LN, but I would want to monitor the advice given to them to make sure they weren't being told anything wacky. The other option would be to send them to a good Lyme doctor and tell them to avoid the internet altogether.
Sometimes I try to imagine what would have happened if I got the referral to my LLMD but never went online to research my condition. Is ignorance really bliss? For some people maybe, but I'm the kind of person that likes to know every aspect of what's going on.
Consider this quote from Steven Harris's chapter of Healing Lyme, "The people who tend to heal from Lyme disease are those who don’t know how sick they are. They are those who are out there doing things, living life and functioning amidst all of the adversity that Lyme disease brings into their lives."
For the first couple months of my illness that was me; I would force myself to leave the house and see my friends, force myself to keep riding my bike and playing football, etc etc. Unfortunately I just got sicker and sicker until I was truly unable to leave the house, but for those who aren't as ill as I am, it might be better for them to avoid the controversy all together and try to keep living their lives. For these people I would send them to a doctor I trust, and tell them to stay away from the internet unless they really want to get swept up in it all.
-Adam