Whats the point of haveing a secure code why logging in here. If anyone can Goole a name:
example : NNNN NNNN livingwithtn.org and then read a lot of stuff who you thought was anonymous to other people then the members.
Check it out yourself and see what you find ?
Then we have a discussion, right ?
I replied to this - don't know what happened -- I messaged Red on this
I am a professional in real life and not always posting really professional - like language on here LOL -- soooo
Hope they can fix this! Thank you for figuring this out - I've been on here 2 years and Most People don't know my screen name from my real name but......
Anna, I am unable to reply to your PM as I am very tired after a ten hour workday and can only manage to sit on the sofa with my IPad and cannot switch on my PC.
Here is part of the draft letter I have written to send you later on this week as I have massive commitments at work over the Easter period.
I am sorry you are upset, but I do find this puzzling. LwTN has always been an open site, and I would hazard a guess that it always will be. Part of the ethos of Ben’s Friends has been to help and educate, and by being an open group it allows patients researching their illness, to fact find here. We have even sent out newsletters explaining this lately.
The reason you login, is to access your own page.
I doubt this can be “fixed” as we are a SOCIAL NETWORKING GROUP as it stated on the Homepage.
Please feel free to write to Scott Orn or Ben Munoz if you have further problems with this matter, site workings are not something I can alter.
Here is a direct quote from the the Mission Statement accessible from the link on the Homepage and indeed every page
Visitors should also be aware that our discussion forums and groups are publicly accessible and frequently searched by Google. Thus your speech here should be considered “public”.
This goes for most forums, once you put something on the Internet it’s in the public domain so to speak. Personally I don’t worry about it and would never put anything I didn’t want others to see on an open forum.
Let me add around the edges of Jackie's very apropos input... Double-X, your statements in our public forums are not traceable to you unless you add your identity to your postings. Likewise, your site mail is private and not visible to google. Finally, our Groups tab and the group discussions under that tab are visible only to our members. Thus I think your "horror" is a bit out of proportion.
There is a positive purpose in making our discussion groups visible to google and the public: this visibility helps us to attract people through google who need the assistance they can find here. If some of our members need or want anonymity, they can simply use their login handles without adding identity data. Alternately, they can have part of their discussions in groups which require a member login to access.
Regards and best,
Red Lawhern, Ph.D.
Resident Research Analyst, LWTn
That’s was screen names are for, you can choose to be anonymous by having leaving the avatar blank and choosing an ambiguous screen name.
Anna, what surprises me the most is the energy you seem to be spending being vociferous about a matter which has never been hidden.
I agree with Masi. Anonymity is the perogative of any member and in their control. If you have made a point of complaining about this before, then you must have been aware of this before.
Nothing but care and kindness has been shown to you here, I am at a loss to understand why you appear to have turned unkind to a group which always tried to help you.
I guess we can only do our best.
A message will be sent out to members to remind them about this matter.
Hi Double X, I’m the co-founder of the site. It’s always been an open forum since day one. I’m sorry you thought different. We have asked people to use screen names and take other privacy precautions many times.
You are free to delete your membership and sign up again with a clean slate. Google re-indexes the site every once in awhile so your discussions will disappear from google after their re indexing is done.
I only found this group existed while googling questions about my condition and medications, I wouldn't have found out about it otherwise. My neurologist also didn't know it existed until I told him.
It really has to be an open forum so all information here is accessible to everyone who needs it.
I think it's basic common sense that you should not use your real, full name on any site on the internet. Some might argue that even Facebook should be accessed with a fake screen name.
Additionally, if you go to the main page and read the site's mission statement and rules, it very clearly states that this is an open website. Do not blame the site if you did not read the information before joining. That's on you.
And instead of getting angry about it, why don't we work together to share knowledge on how to maintain privacy, not only on this site, but all sites? People have offered ways to solve this, yet instead of thanking them for their advice, people seem more interested in continuing the drama as opposed to solving the problem at hand.
If you go to the settings options, you can make your page private. That, combined with a screen name different from your real name should make a difference in protecting your privacy.
Yes, if you make your name "daffy duck", people can google it and see all the comments made by daffy duck. But how would anyone know that YOU are daffy duck? They wouldn't, hence the importance of a screen name.
I always try and remember that it is *my* job to protect my privacy, and mine only. Nowhere does this site say that it's private and/or closed.
Finally, this is a free site. It is a privilege for us to use it - NOT an entitlement. So be gracious and appreciate the free resource you've been given.
If I may add to Crystal's thoughtful and cogent remarks:
Double-X -- we do have private discussion forums. Our Groups serve that function. You have to be a member of the Group to open its gateway, and that means you've applied and been accepted by the Group owner/creator. Person to person email is also private and not indexed on google. The Forums, however, are public and frequently indexed by Google. It's certainly not "all about more members," but helping more people is a legitimate and positive goal. And we can't do that if we try to make ourselves invisible in the net.
Even in a public forum, if you use an Avatar that doesn't show your face, and a login name that doesn't reveal your personal identity by name, you are still able to preserve your anonymity as an individual and at the same time share your personal experience and issues with other people. This is a prevailing standard of practice in just about all health and medical websites and forums, and it works quite well for millions of people. If this response still does not satisfy you, then we'll be sorry to see you go. Your concern is largely not shared by others here.
Regards
R.A. "Red" Lawhern, Ph.D.
Resident Research Analyst
Double X said:
I have a Swedish group and none of them either belived this was an open forum or an open group.I think that for people to share their most private stuff like they do here......need some form of private forum. Dont you agree.? If its all about getting more members....
People sharing their illness often writes whats scares them most. I know. I am one of two starting a group and its closed. The members need support. Just as it says here. But they also need privacy.
Well I guess it will show in members losts....how many will choose a close group instead.
It does state , enter screen name ( do not use your own) when you subscribe, google pics up everything, most people know that, I found this site through using google, it’s not just here, it’s the whole Internet in general, nothing is anonymous unless using a screen name and either none or a standard picture. The usual these days is send a private message to someone if you don’t want it to be seen.
It’s a fair point you raise, some people may not know this , but most do. It’s akin to saying that CCTV can’t recognize you throughout the world with info off a biometric passport , anythings possible, so if you need to hide, wear a hat and glasses or at least a disguise 
But here is the thing Doublex, a newsletter is sent out on a very regular basis, at least once every six weeks, emphasising that this is a public forum, this being by way of information to new members and reinforcement to our long term ones. We simply cannot legislate for the members who do not choose to read them for any reason.
Double X said:
Well I am not alone in this and have become upset for other members sake. I am sorry if you felt my loudness were at the wrong time. Is it ever the right time to complain ?
I am not feeling unkind. I have made a point and started a discussion about if the members here are aware of that everything they write is public. I havent been rude or complained about the answers I have got here in any ways. I havent complained about any people in this group at all.
I have written a,ot of letters to you Jackie and I havent lied, been rude in any way. I have been so kind an gentle always. I have helped people that needed help so I cant find myself being rude. I have got upset because I read other members issue in this. If there had been a message in any form about this hadent wrote this at all. So I made a point and became the “houndhead”
I think it is ashame it isn´t more visible this group is open and I have never been asked or showned I should use a alias or not write in private. Well one women told me to think about what I wrote but she belived I lived in NY and was seing doctor NN so I didnt tace it siriously…
Many of the written blogs are also written in a way that I belive they weren`t written in public. Therefor I asked. I started a discussion and I clearly wrote so that everyone could see.
Is this is a group where you cant ask how it is loud and clear to all. Or complain. You shall tell that to everyone to.
Yes Its true I asked this before, several years ago but I have actually thought the “problems” with integrity was fixed. Therefor I was chocked when I recently found out others thought just like me. So either its us being stupid not understand all this was public or its The group not being clearly enough that we understand…
Jackie said:
Anna, what surprises me the most is the energy you seem to be spending being vociferous about a matter which has never been hidden.
I agree with Masi. Anonymity is the perogative of any member and in their control. If you have made a point of complaining about this before, then you must have been aware of this before.
Nothing but care and kindness has been shown to you here, I am at a loss to understand why you appear to have turned unkind to a group which always tried to help you.
I guess we can only do our best.
A message will be sent out to members to remind them about this matter.
I think if it wasn't for LwTN being an open forum I wouldn't have found out about this site. I'm a member on other health forums beside LwTN and it's possible for me to view all discussions I participated in on these websites when I enter my screen name+the name of website into google search engine. Whatever I share in discussion forums anywhere on the internet I consider to be public; private messaging is a different matter.
Personally, I am of the mind set if I do not want to risk the whole world knowing, I do not post it online.
That is what was going to say Anne. I only found this group because i googled a random question and i saw someones post. Its been invaluable to me and I personally feel that if you don't like the site, then go away! Its been the most loving excepting place and `i for one don't care who reads my posts. If it helps them one tiny bit then its worth it. You people that work so hard to make this a nice place for us suffers please don't allow this negativity to cloud your desire to help. You are all amazing for giving up your free time to help us.THANK YOU!!! xx
Anne said:
I only found this group existed while googling questions about my condition and medications, I wouldn't have found out about it otherwise. My neurologist also didn't know it existed until I told him.
It really has to be an open forum so all information here is accessible to everyone who needs it.
I am not sure what the issue is, so long as the person's forum handle and profile does not give any indication of their real identity.
Everything one puts on the internet is in the public domain and there is sadly no real way around this. If it is very sensitive/private, put it in a PM to particular members or don't post it at all.
if you add your REAL name as your screen name to anything on the internet it will follow you ! since the convos on this site as well 1000s just like it are open for ALL to SEE [ meaning the entire world ]! it is tracked back to YOU!! i suggest you open up a new acct here with something other than your real name as your screen name ! i also suggest you do not use facebook as a connection to this site or any others! if you are so worried about the entire world knowing your problems i also suggest closing your facebook acct all together! open a new one with another name and tell your close friends thats what you are going to be doing!facebook itself as far as im concerned is not a place to be telling the world [ 1 friend can lead to hundreds and then thousands if you let it!] about your problems if you dont want people to know! NEVER attach your real name as your [screen name] on any site on the internet and you wont have this type of situation!! your real name is attached to facebook and why a link was created on a facebook page without the knowledge of someone im not sure ! unless you possibly used facebook to connect to this site with your real name as your screen name here as well! theres no doubt in my mind you used facebook to connect to this site! it doesnt just magically appear ! use direct links to the sites you want to visit ! dont use facebook!
im not talking down to you! i dont know what the situation was at the beginning of this site! but if it was for public info it was somewhere on here that you did not read ! or it was changed after ! i do not know! all im suggesting to you [in all honesty] is to NEVER put your real name as your screen name at any time on any site that is on the internet! one REAL NAME links to another! plain and simple !! when i 1st got on the internet years ago i DID the SAME THING ! [ REAL NAME ] !it didnt take me long to realize it was a BIG BOO BOO !! again no harm intended by my last message ! i wish you the best !! i mean that !