- This topic has 13 replies, 12 voices, and was last updated 14 years, 1 month ago by
.
-
Posts
-
Here is some private messaging that I have been receiving and answering. My reply is in the next post:
_____Original Message_____
From: lynnie_sydney
Date: 2010-03-17 19:14:33
Subject: prescribingHi superperro – your contributions to the Forum are greatly appreciated. We just wanted to let you know that your recent post on this thread http://www.rbfbb.org/view_topic.php?id=4041&forum_id=1&jump_to=37701#p37701 just crossed over the line into prescribing/giving medical advice, no doubt inadvertently.
Would you mind doing a quick self-edit? Something simple like 'you might want to consider' would work. Thanks for your understanding. Lynnie (on behalf of Volunteers)
superperro(RA) wrote Very happy for you. If the Relafen, which is an NSAID, starts hurting your stomach, I advise you to take prilosec or some other proton pump inhibitor to protect your stomach. (You can also take NSAIDs in suppository form to protect the stomach. That is what I do) If your progress stalls at some point, I advise you to add another antibiotic to the mix, like azithromicin. Finally, 5mg prednisone is a small dose, but zero would be even better. If the NSAIDs work well enough for you, they might be enough to replace the prednisone. You might also try out the anti-inflammatory MSM. Some people find it highly effective.
_____Original Message_____
From: superperro(RA)
Date: 2010-03-18 18:31:02
Subject: Re: prescribing[/color]This edit is being added to this post as an edit rather than a new reply so as to not elevate the thread to the top of the forum.
Firstly, some clarification is required regarding the use of Guideline and Policy Reminder PM?s by Volunteers. They do not comprise summary decisions or actions taken by any particular Volunteer. Breaches are discussed at Board level. Where appropriate, reminders are then communicated personally, amicably and privately by one of the Volunteers.
Secondly, using the Private Message function to alert Members when they have wandered (almost always inadvertently) into medical advice/ prescribing territory is so that these Members are not seen to be being publicly admonished. That is not our intent. We attempt to keep the reminder in the PM?s friendly and approachable and leave the power with the Member to self-edit the post. In general, these reminder PM?s stay private and are amicably resolved privately[/i], which is to the benefit of all concerned. Occasionally, as in this case, that does not happen.
[/i]About the Foundation and its Responsibilities
RBF is a Foundation that offers resources, information and advocacy for antibiotic therapy as a treatment option for rheumatic diseases. It does not engage in medical or any other kind of prescriptive advice. That has been the policy of Road Back for more than two decades; it is clearly stated both on our main site and as an announcement at the top of this Forum.Medical advice and direction is clearly the terrain of licensed physicians. The Forum was set up purely as a peer-to-peer free service for patients to support one another and to offer wisdom, experience and, in some instances, additional information. It is not a platform for patients to offer medical advice to others or to give directives of any kind.
Patients cannot know the full extent of another patient's condition and how peer-directed advice may or may not harm them.
Our medical advice disclaimer, in some measure, protects The Foundation from being seen to prescribe. The Foundation also recognises that it has a further role in protecting Forum Members from direct and prescriptive advice from others. Long-term Members who have travelled a long way down their particular road back to health are naturally respected by newer Members for their experience and wisdom. We need to ensure that this experience and wisdom is not phrased in terms of direct medical advice.
RBF does not have the volunteer time or resources to monitor and moderate every post that may be misinterpreted as medical advice. So we ask that Forum Members take care in their phrasing. You might consider, want to discuss with your doctor, what worked for me, it says on our main site etc are examples of very simple ways to make a post helpful without using prescriptive terminology. [/i]
In closing, this thread will be closed on Wednesday, 3/24/2010 to avoid distracting from the forum's purpose. If you have any questions or comments, please feel free to contact me via PM or email at cheryl@roadback.org.
Cheryl Ferguson, RBF President
Okay, Lynnie. I admit one mistake, and one mistake only, which was to blame you personally. My sincerest apology for that. I was very upset, but that in no way excuses me for hurting you.
I'm sorry, but I must take a stand on this, for reasons of conscience. I think this policy “though shall not prescribe”, is wrong and very harmful to this forum. This is why
(1)BOARD USES WRONG DEFINITION OF PRESCRIBING
Prescribing is what a licensed physician does. A prescription is something a patient is under strong pressure to follow because society says it's a bad thing, and harmful to your health, not to follow your doctors prescriptions.
Advice is something the average Joe or Mary gives, and the person who receives it can choose to either follow it or not. There is no pressure to follow the advice we receive from others in this forum. In the internet, we receive advice of all kinds, often contradictory, and we pick and choose what we like.
If I were identifying myself as a physician, then maybe a case could be made that I was prescribing. Since I am not a physician, and have never claimed to be one, I am not prescribing, by my definition (which is a sensible one, and probably the most commonly accepted one).
(2)BOARD'S BAN ON PRESCRIBING IS VAGUE AND UNENFORCEABLE IN A FAIR WAY
Because of its incorrect, vague definition of the word “prescribing”, the board's ban on prescribing is unenforceable in a fair way.
I really don't see any difference between giving advice and the board's definition of prescribing. Anytime anyone mentions any medicine favorably, isn't this *an implicit advice* to take the medicine, and therefore qualifies as an example of the board's prescribing? There is a wide continuous spectrum of possible ways to mention a medicine, from
“you should take this”, to
“you might take this”, to
“I would take this if I were in your shoes”, to
“the famous Dr. X says in his paper to take this” to
“when i was in your shoes I took this” to
“these statistics say that this medicine is the best”.Where do you draw the line, according to the board's harebrained definition of “prescribing”, and more to the point, should the board be in the business of drawing a line?
(3)BOARD IS MIS-REPRESENTING DR. BROWN'S NAME WITH THIS POLICY
This board is supposed to be representing Dr. Brown name and ideas. It seems to me that by enforcing this arbitrary policy, they are doing the opposite.If a person is a little too forceful in his recommendation of a particular medicine (or of religion, to include a previous, very painful episode), I don't think the correct way to proceed is to humiliate them (even if it's by private messaging). The board should just publish a “counter-post” saying that the board does not advocate that particular medicine alone, there are other choices, or please note that that medicine goes against Dr. Brown's philosophy. Period. They should not ask anyone to change their post under threat of excommunication (This, as long as the post appears to be well intentioned and devoid of hateful language, of course).
By following this policy, the board is hurting people. And what type of people is it hurting? D. Brown's children. People who give their advice freely and with the best of intentions. People who have suffered greatly from this disease–both physically and emotionally, and who are clinically depressed. It's not very nice to humiliate people in any state, but especially people in the RA state. And no matter what the lofty board says, this policy does humiliate people.
What would Dr. Brown do? I think, he would politely allow all well intentioned posts, and if he disagreed with anything, post a “counter-post” politely explaining his different view of the subject, and his reasons why. He would not say, you either retract what you said, or we will exclude you.
(4)BOARD IS KILLING DIVERSITY WITH THIS POLICY
If I were to continue in this forum, after this episode, I would, in the future, be inclined to keep my opinions to myself. In general, this policy strongly discourages, and in some cases outright censors some people's opinions, allegedly because they are not expressed in the politically correct language. As a reader of this forum, I find this very distressing. I want to hear ALL points of view, even those with which I disagree. Dr. Brown's point of view was suppressed by the RA establishment, and this board, with its threats of excommunication, is doing something very similar, is it not? I'm not a very religious person, I deplore homeopathy, but if someone mentions them in this forum, I just post a counter-post. I don't threaten. I don't humiliate.Superperro,
I can say that I really understand both sides.
I think that The volunteers are the greatest group that we could possibly ever ask for. I value their knowledge very much. I respect them for giving their time and always being here for all of us when we need help or just someone who understands. I think the hard part of their job is doing what they have to do to keep the Road Back site up and running and as “smoothly” as possible without hurting anyone in the process. Sometimes they have to make the calls, because that is their responsibility. I personally think they do a wonderful service for us all. I'm glad they are here.
I can understand, how this may have hurt feelings, as I am very sensitive and get my feelings hurt very easy. But try not to take it personal, just look at it like a misunderstanding and let it go. I know it seems like your right of speech is being cut , but it is not. It is just like every other part of life, we have to have rules.
Having” stuck” my neck out to say all this, I hope that you will not leave this site, we need you and your experiences. We are FAMILY here, so please reconsider.
HOPE YOU ARE NOT UPSET WITH ME!!!!!!!!
Judy
One thing I realized is email has no emotions. I am sure any misunderstanding is not intentional. If you ever met Lynnie in person, I am sure you would never want to write that stuff to her.
I met Lynnie in Sydney. She is such a wonderful wonderful soul you could ever imagine. We had a great conversation for over 2 hours, it seemed only 5 minutes. I really appreciate Lynnie more than ever because she is reaching out to thousands. Like other God sent angels who volunteer their time to help us, to offer their shoulders for us to cry on, Lynnie spent many many countless hours to help us. [/size]
Count on our blessings, you want to quit or not, keep helping others as we are paying those kindness forward.
Superperro- I think boards like this have to be vigilant to keep their credibility. If they are perceived ( even if it's just a perception) as taking a doctor's role, they cannot hope to gain the respect and confidence of the medical – and wider- community. We all know that we need to exercise extreme care with information we access on the net…and this makes caution for the Road Back board critical.
Don't take the “corrections” personally! The moderators have a big job here to get the word out in a way that puts the Road Back in a strong position.
Just my take on it!!
This immature outburst casts such a gloom over the board for me. It is quite apparent that no one is trying to “censor” your diverse opinions, you are simply being asked to stick to language that does not sound prescriptive. It?s really quite simple.
To further disrespect this forum and what it is here for, you have posted a PRIVATE message on the PUBLIC forum, as well as horrifyingly, personally and publically insulted one of our volunteers. How can someone affected by illness themselves not understand what this forum is here for, and what guidelines must be adhered to in order for the forum to exist? Also, how is it not possible to see how unbelievably LUCKY we are to have Lynnie and all the other RBF volunteers???
This thread is sad and unproductive, and I hope it can be removed soon, so we can concentrate on the things that matter.
Kats
Changing the word “advise” to “you might want to consider” does not seem too much to ask. I am sorry you got your feelings hurt. It could have been done completely in private, if you would have just slightly reworded your suggestions. No one would need to know. No public humiliation.
You have good suggestions to offer and I do hope you will reconsider. We are all walking a fine line when it comes to being accepted and treated properly by mainstream medicine. I am sure the forum is also.
The volunteers here are kind and thoughtful. They are taking their time to help people they have never met. When someone new comes on, they are treated warmly and welcomed.
Please take some time and reconsider.
Sincerely, Ann
I think a little bit of common sense is needed here … Having read the post it's my belief the words 'I advise you' may be where the problem lies, otherwise I think the post is ok. I wouldn't think that any volunteer or member on this board would deliberately go out of their way to upset someone .. it's how the member perceives the caution that seems to be the issue. As as matter of mediation I suggest both people chill & look at this from a different perspective it may give you some clarity as to what happened.
I hope as a member that no-one leaves the RB site & agree that we all have other issues far more important to discuss than you said, she said, he said. From my point of view the RB site & it's members have been a great help to me & for that reason I continue to be a member although I am right now asymptomatic.
Maz – Aust
Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)All off days Probiotics
I am really, really, upset by this post!
To personally attack a volunteer is uncalled for. Lynnie has been an invaluable resource to this group and generously given of her time and experience for years. To attack her for asking a poster to adhere to the guidelines that we all accepted when signing up to participate is a low blow. If you've ever been on a board that is un-moderated, you'll come to appreciate why these guidelines are in place. What you see on the board is only a fraction of what Lynnie does behind the scenes to further support RBF. She doesn't need to be here, she's doing well and has it figured out. We need her……..she doesn't need us! Posts like this make all the volunteers want to walk away and throw in the towel.
This was uncalled for and beyond hurtful.
kim
As a new volunteer for RBF, this deeply upset me yesterday. There is SO much that goes on behind the scenes, to protect everyone on this site, as well as to be able to offer this for FREE. Lynnie, and the rest of us spend countless hours talking with and emailing people to comfort them, make them feel at ease in their darkest hour, and give them the opportunity to help put them in contact with doctors who can treat their various, often complex illnesses. We don't do this to have status, collect a paycheck, or say “we know more than anyone.” We do it because in our hearts, we deeply care about every single person that crosses our paths here. We do it because we have been there, feeling scared, alone, and uncertain about what lies ahead. I know I don't just speak for myself, I speak for all of us when I say that it's an honor and a blessing for us to be able to do what we do. I have NO room for this type of personal attack on someone who has done, and continues to do SO much for this forum. Lynnie, I'm sorry this had to happen, as none of us, volunteer or not, needs to endure this type of behavior. In order for RBF to be available, there has to be rules–not because we want to censor or pick on someone. Please understand that ALL of us are sick (even if we're in remission), and this is beyond hurtful to have to read this on a public discussion forum, when the administrators tried to keep it private. If one new person saw this and decided this wasn't a supportive forum because of what was said, and we lost just ONE person, how sad and unfortunate would that be?
I'm sorry if you felt this was a personal attack because I can assure you, it absolutely was not. Have the maturity to address this privately. We all want a safe, supportive place to be able to come to. We welcome you to stay and value your knowledge. If you no longer find this site welcoming, please know that we wish you continued healing, happiness and peace.
Maria
[user=26]superperro(RA)[/user] wrote:
And what type of people is it hurting? D. Brown's children. People who give their advice freely and with the best of intentions. People who have suffered greatly from this disease–both physically and emotionally, and who are clinically depressed. It's not very nice to humiliate people in any state, but especially people in the RA state. And no matter what the lofty board says, this policy does humiliate people.
This was the last post I read yesterday before turning off the computer. I cannot tell you how horribly upset, to the point of shaking, I was to read your post. I actually hoped noone would respond and your post would quickly go away. Today is a new day and the well-thought out responses were really needed–by me and I am sure anyone who read the post.
I took the time to really read your post to understand what could have triggered this and see that you are clinically depressed. I'm not making excuses for you, but I can also see how easily you can be offended with all you are dealing with. I wish you well.
To all the volunteers–especially Lynnie, I am so sorry that this happened. You are wonderful! I have appreciated your knowledge over the past two years, the huge amount of time you take in responding to posters, and your kindness and compassion. Please don't “ever walk away and throw in the towel”.
Trudi
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?
[user=442]Trudi[/user] wrote:
To all the volunteers–especially Lynnie, I am so sorry that this happened. You are wonderful! I have appreciated your knowledge over the past two years, the huge amount of time you take in responding to posters, and your kindness and compassion. Please don't “ever walk away and throw in the towel”.
Trudi
Trudi,
Rest assured, Lynnie has a big heart which could contain the whole ocean of the earth. Otherwise, she would have left here long time ago. I am sure this is not the first time happened to our wonderful volunteers.
Send her words of comfort and encouragement through PM if you guys don't want to post your thoughts.
Look at it positively, we should be thankful for the volunteers' warnings, not taking it offensively. The rule protects our own interests and also protects this support group. We all mean so well, that is we are here to help each other to get better. We share our medical information with others. However, we would be in a very vulnerable position to get law suit if we are not careful, :angry: or this site could be permanently removed if we were found liable…After all we are not doctors.
Feel free to tell me if I cross the line, volunteers!
JB :blush:
Man, this post makes me sick too.. Why not just keep the matter private and work it out with Lynnie? To take this to the public forum is very very childish IMO.. The information and time the volunteers give is invaluable and to treat any of them like this is flat out disgusting..
Why is it so hard to understand why they have the rules that they do? It is a fine line between giving advice and what sounds like prescribing but when they nicely ask you to change something, just do it!
This thread needs deleted ASAP..
The topic ‘ Probably Goodbye’ is closed to new replies.