February 19, 2010 at 9:54 pm #303547RBFVKeymaster
Below you will find a copy of the private message that was sent to Susan/Lyme and the specific statement in her post that we asked her to consider.
Our issue with this statement was the wording:
“You must believe that God…”
After some discussion with the RBF volunteer team, this statement was deemed to be a directive, akin to prescribing, rather than a sharing of personal experiences. The prescribing of medications, supplements, supportive adjuncts or even political, spiritual or religious directives must be moderated on a consistent basis. In such cases, members will receive a private message requesting that they edit their own posts in order to share what has worked for them rather than state the suggestion as a prescription for getting well. Susan is a valued member of this forum and she was contacted privately to share our concern. We did not receive any private reply from her that would have enabled further dialogue to prevent this misunderstanding.
Please be clear, RBF does not expect forum participants to exclude their experiences of healing measures related to spiritual or religious methods. However, statements posed as a directive such as these are considered to be outside of RBFBB Forum Guidelines. There are many examples of past postings related to personal experiences of religion and spirituality that the moderators have not found inappropriate.
We do not intend to censure the sharing of information or individual paths to wellness, but a middle ground is important to ensure all registered users will feel welcome and comfortable. This is not the place to give directives to others, which could potentially place the Road Back Foundation at risk of being charged with prescribing, prosthelytizing and/or giving medical or other advice, but a forum to share what has worked for participant's personally while discussing the therapy.
Finally, please know that all of the RBF Forum Moderators are volunteers whose primary goal is to keep this forum available to all as a free service to anyone who registers. In return, participants are requested to observe forum guidelines and policy. Moderators collaborate in all forum policy matters to attempt to balance participant freedoms with any potential risk to RBF. We hope this lends some perspective to Susan's comments on this thread.
Susan Lyme/RA wrote:
“The first thing you must believe is that God gave us a body that is designed to heal itself. It isn't God's plan for us to be sick. Believe you can heal and you will heal.”
Your post (as quoted above) on the following thread has been brought to the attention of RBF Admin:
As RBF serves users internationally, some of whom may have a particular religious or spiritual inclination and some who may not be of any persuasion at all, we must ask all users to kindly refrain from any form of religious or spiritual references or prescriptions for health. This applies equally to other hot button subjects, for example, such as politics, which hold potential for igniting inflammatory responses or just general discomfort amongst users who may not share the same beliefs.
Your informative posts are appreciated and your good intentions noted, but as per forum guidelines, RBF must respectfully remind you to please keep all posts focused on antibiotic therapy and supportive adjuncts. Thank you for your understanding.”February 19, 2010 at 9:58 pm #342042RBFVKeymaster
In an attempt to post the RBFV reply to Susan Lyme/RA's Thread titled “Goodbye”. The entire thread was accidentally deleted. Please be assured that it was not our intent to delete this thread and was a simple miss click of a button. When the error was made, a call was immediately placed to the RBF web consultant to see if the content can be retrieved. Until then, or if it is not possible to retrieve the posts that were accidentally deleted, please feel free to repost your comments.
The RBF Webmaster responded and said that the deleted thread was not able to be restored without going back to a prior back up which would have caused other threads and posts to be lost.
Thankfully, one member was able to capture and restore most of the deleted thread which is now posted further down on this thread.February 19, 2010 at 10:25 pm #342041spacehoppaParticipant
I feel like I've missed something here… Not sure I quite understand what's gone on? If it's the case that Susan feels she should leave the forum I would like to say please don't go.
Whilst I completely understand the RBF's point of view, I just want to say that as an atheist myself I was in no way offended by Susan's post. I understand that Susan's belief in God means that speaking in this way is just what is natural for her. I'm sure there was nothing more to it than that – just a natural way of phrasing this thought in her mind.
As an atheist, I just replaced the word 'God' with 'nature' in this sentence and entirely grasped her meaning and her good intention.
I certainly don't want to lose good people like Susan from this forum. We're a family!February 19, 2010 at 11:10 pm #342043
I'm not going to say what I really think here I just want you to know that I see nothing wrong with this post. It is a fact that if you want to heal you will heal and if you don't then you will sit on your ass and not.
You americans in the land of not so free would be a lot better off if you left the lawyers out of it.
If you decide this is a Goodbye thread then so be it.
Davit.February 19, 2010 at 11:33 pm #342044TrudiParticipant
Thank you, RBF administrators, for taking the time to explain your decision.
Susan is an extremely strong person and I can easily see her say “you must.” But I do recognize where the board is coming from in that we can only reveal what has worked for us and hope that it is of help to others.
I very much value your input, Susan, and look forward to your posts. I really, really hope this is not good-bye.
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?February 19, 2010 at 11:51 pm #342045
Sorry but even with the word must it still sounds like her point of view not a demand. And how do you interpret God. How do you interpret where a body actually came from and how. And the word you covers a lot of ground and often means I when describing something.
Davit.February 20, 2010 at 12:13 am #342046mkbeelieverParticipant
As an atheist, I just replaced the word 'God' with 'nature' in this sentence and entirely grasped her meaning and her good intention.
I certainly don't want to lose good people like Susan from this forum. We're a family!
AMEN! This hits the nail right on the head spacehoppa! I don't take issue with our diversity, your athieism, her Christianity, my Catholic Christianity or anyone's faith choice. We are a family and I doubt very seriously anyone brought anything to the attention of RBF Admin. (not sure if volunteers are “RBF Admin” if so, still love you Tommy's Angels!)
I speak and write naturally in a very Christian way. Others speak more technically, others in a spiritual, new age way, others in a FRENCH way (HI LYNNE!) and others in a vulgar way bleeping out their bad words. HOWEVER, I value everyone's opinions and views and embrace our differences.
And because I can't learn how to quote multiple people…:doh:
“Sorry but even with the word must it still sounds like her point of view not a demand. And how do you interpret God. How do you interpret where a body actually came from and how. And the word you covers a lot of ground and often means I when describing something.“
I agree with this also Davit!
PLEASE people. COME ON! I'm disgusted by all of this. This is a sad, pitiful state of events going on here. So disappointed. :crying:
Susan, I love you and am praying for your heart as I'm sure you are very hurt. Heart sick and physically sick. Gotta love it. Geeesh.
MichelleFebruary 20, 2010 at 12:50 am #342047sueraParticipant
I don't know what is going on here either, probably the same thing that is happening all over the USA, politcal correctness run amok. I agree with Davit, leave the lawyers out of it. Sad.:crying:February 20, 2010 at 1:12 am #342048
The RBF board has a responsibility to every member to keep this site unbiased, a place where all can come and share. While those of us who have responded to this post are not offended by Susan's statement, that doesn't mean that someone out there wouldn't be offended. Prior to this I think we've been given quite a bit of leeway with our comments relating to our beliefs. It's difficult for all of us to navigate thru this PC world and I do believe the board acted in what they felt was the best interest of the site.
However, we often have very strong feelings about our religious beliefs and I can see how Susan was hurt by having her post singled out. We all knew that she was not trying to force her belief on anyone else, but again, there may be some out there who don't know her and think that that's what she was saying. We get used to speaking a certain way or saying things that we have believed for so long that we don't give them a second thought, I myself have done this many, many times.
Susan you obviously have very strong feelings about your faith and I truly admire that, my own faith has slipped in the last few years and it is comforting to me to see your faith in the face of adversity. It really is too bad that we live in a world where we have to be so careful about what we say and do. But it is a reality and unfortunately the board had to be the bad guy and respond to your post. I think they felt bad about having to do that. (I goofed when I said that it was deleted. My bad.)
I'm a fence sitter on this one; I understand Susan's deep feelings and why she is hurt, but I also understand the board's position. I value both. Please stay Susan. :doh:February 20, 2010 at 1:40 am #342049
You americans in the land of not so free would be a lot better off if you left the lawyers out of it.I'm not going to say what I really think here I just want you to know that I see nothing wrong with this post. It is a fact that if you want to heal you will heal and if you don't then you will sit on your ass and not.
Davit, I admit there are those who have resigned themselves to the fact that they are never going to get better, and they do just sit on their ass, and you're absolutely right, they will stay sick. But please don't throw those of us who are actively trying to get better but still very sick into that group. I hear the same thing that you said from people who are healthy and can't understand our dilemma, I had to listen to it for 3 wks over the holidays from my father, but it's really tough to take from one of our own.
Davit, I want to heal so badly that it hurts. When this flare that is going on 10 yrs now crept up on me I was recently divorced and starting over, going back to school. The flare got so bad that I had to quit, it took a year and a half but I fought my way back with the help of a pain specialist. I was careful with my diet, went back to school and work, and exercised. I was positive and thanked God every day for helping me get back on my feet. I stayed in remission for 2 yrs, long enough for me to get my Associate degree and start dating. I had beaten it and was moving on with great hopes for my future.
Then the pain and fatigue gradually started coming back; I felt like I was standing on a beach and watching a huge tidal wave coming at me, it was far away and moving slowly but it was definitely coming and there was nothing I could do about it. I fought hard, tried to keep exercising and eating right, praying every day, staying positive. I was doing everything right, so I kept telling myself that this was short lived, just a blip. Well it wasn't, and I was devastated. I wasn't sitting on my ass, I was doing everything possible to prevent the relapse, but it happened anyway. I've heard numerous stories from people who used to run marathons, do triathlons, people who are highly motivated and disciplined who have been felled by this awful monster that we have inside of us.
I want so many things, Davit. I want to be financially independent from my ex-husband, healthy enough to babysit for my grandchildren when they arrive, date and find a companion, go back to school, get my degree in math and do what I love, teach. I want to hike and camp and learn line dancing. I would do just about anything to do these things that most people take for granted.
I apologize for the length of this rant but not for it's contents. Maybe you just caught me on a bad day. I'm on day 7 of a 10 day schedule of an antibiotic in the Levaquin family for pneumonia and I can hardly move. I'm probably overreacting but I've been fighting this war for over 25 yrs and each victory lasts a shorter time than the last; I'm slowly losing the war. I'm probably going to read this tomorrow and be sick of myself, but it won't be the first time nor the last. And as for those people who have given up and are just sitting around waiting to die, who am I to judge?:doh: There but for the grace of God go I.
Meaner than usual, lindaFebruary 20, 2010 at 1:48 am #342050Cheryl FKeymaster
the board had to be the bad guy and delete your post. I think they felt bad about having to do that.
Linda and all:
I do not believe that any of the moderators deleted or edited Susan's post, but it does appear to be edited. I assume that Susan must have done that on her own.
This really shouldn't have to have become such an issue, and I believe should have been discussed privately through an interactive dialogue. As was said in the RBFV posting, the moderators collaborate to determine actions of this sort. We do not delete posts, we interact with the forum member to attempt resolution. I personally will stand behind our option to privately convey a concern in a Personal Message on this system. The same people who are tasked with the job to make such decisions are the volunteers who give significant amounts of time to all of us on this forum. The Road Back Foundation has many ongoing efforts, this forum is just one part of what we do and it cannot become an undue burden to our volunteer moderators. We are doing the best we can to navigate this job to provide an open forum with the focus on the potential of Dr. Brown's AP.
If anyone would like to share their concerns privately, please send me a personal message on this forum, I would be happy to hear your concerns and consider your input.
Road Back Foundation PresidentFebruary 20, 2010 at 1:54 am #342051sueraParticipant
Amen to that Linda. (can I say Amen:?) I hope you feel better soon. After RA, I judge nobody on what they do or don't do for their health, it's only been 4 years for me but feels like a lifetime. You can have a bad day too Linda, get it off your chest and sometimes you feel better.February 20, 2010 at 2:16 am #342052
I think there will be more than just you and me looking back at this different tomorrow. I did not think there was anything any more that could make me react with such feeling. Normally I would sit on the fence and watch this play out. Maybe it's because I can no longer climb the fence. I'm in the same boat as you, maybe worse. What good is remission if there is no cartilage left in the joints? What good are artificial knees to me as a gardener if I can't kneel on them? What is keeping me alive for that matter? I've upped the Minocin and today is Friday so I don't have to tell you how I feel.
Susan, I am sorry if we are embarrassing you the intention was not that. Stay with us. By now it must be obvious how much we love you.
And for the rest of you remember that two hundred years ago you would have been burnt at the stake for saying any thing less. What is this world coming to!
A still upset Davit.February 20, 2010 at 2:17 am #342053KimParticipant
Let me just say this is a very unfortunate situation.
If all APers were as proactive as Susan has been we would have fewer sick people on this board. She has been faced with one challenge after another, but chugged along anyway. She hit the wall many times which only strengthened her resolve to figure out which way to go next. In addition to what she's done personally, she's been very generous in posting her successes in the hopes it might help someone else. I, for one, have been inspired and learned much from her posts and am grateful for her participation. Susan is a valuable member of our community and I hope she will reconsider her stance.
This board has grown considerably in the last few years and provides an invaluable service to some very sick people who have almost given up. The moderators work 7 days a week fielding questions and a lot more goes on behind the scene……numerous PMs and phone calls. We agonize when people struggle, such as Linda has, but also rejoice when things start heading in the right direction. In other words, we care!
If people want to start slinging mud it could ruin a very good thing.
kimFebruary 20, 2010 at 2:29 am #342054
My apologies, Cheryl, I mispoke when I said delete. I hope it didn't create more problems. I think I've already done enough damage today!
The topic ‘ Goodbye Thread’ is closed to new replies.