This forum isn't private...horrified.

To be perfectly honest, if a complete stranger were to find anything of any interest in the workings of my MS raddled middle aged body, then they are welcome. I should think if people I know were to read this forum they’d probably figure out who I am just from the content of my postings plus the fact that my name really is Sue. Do I care? Not flippin’ likely. That’s why I don’t post anonymously, however potentially embarrassing the subject is.

Sue

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‘Sue’ as in Susan or Suzanne or Susie…?

Incidentally what is your mother’s maiden name and the three figure security code on the rear side of you credit card.

Best regards,

Your Bank.

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Call me an old misery but I didn’t join this forum to be made fun of. I have just blocked two people for making fun of me because of this post.

I have also updated my personal information to a load of rubbish.

No I do NOT want neighbours, friends, my MS nurses, doctors or people from support services thinking ‘I know that person’ if they google something so I have trashed my profile. I am now 116 years old and getting older…

This forum is good in that people that take the mickey can be blocked.

Flo

Hey Paolo

You forgot he “Don’t try this at home” warning.

Geoff

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Well, Flo, you have started an interesting thread.

Back in the day when I joined the old forum (something like about 7 years back) I did put some detail into my profile.
When the forum changed, I did not repeat any of the detail.
Now, I have been active on the internet for close on 25 years, and If anyone knows where to look, they can find out bits about me. But you made me think …

So I did a search for Doctor Geoff and Dr Geoff - and was both surprised and pleased when Google failed to find me.
Without my last name, and my initials, it would seem that I do not exist (down, Paolo).
I know where to find me on the 'net, and any old friends trying to track me down would of course know what name to use.

I think that you can assume that your secret is safe with us - but anyone searching on a topic may find you.
So I wrote that last sentence and thought again …
Looking at the forum using a different browser (which does not automatically log me on), I am relieved to see that no details of my profile are available, unless I (as a stranger) log on.
So, the only thing that could help identify me is the content of a particular post, and if anyone wants to search through many hundreds (probably thousands) of posts - good luck and you will need a lot of time.

So, just think about what you post, and stay safe.

Geoff

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The Forums have always been public facing. This is one of the reasons that we ask people not to use personal details, nor to reference healthcare professionals by name, discuss illegal activity or post content that’s:

  1. obscene, defamatory or libellous, vulgar, sexually orientated, hateful, threatening or in violation of any laws or good morals or practice;

Following this discussion (thanks for raising the issue!) we’re currently reviewing both our Terms & Conditions AND our House Rules, in order that this is made clearer to new users.

Best wishes Stewart (admin)

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The wonderful thing is that Ssssue can say that her name is really Sue just as Alison100 can say that her name is really Alison without anyone actually knowing whether that is so or, indeed, even whether ‘she’ is a she.

Alison

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It’s like looking into somebody’s house. Let’s peek through the window and see what they ar doing.

I have just sent off my esa forms and I shared that on this forum. Did NOT share that with the world.

Posted about no being able to wee. When I googled MS problems and not being able to wee. There I was! Phyllis at number 17 can now go and tell Agnes in the Coop that so n so can’t wee!

There needs to be a warning when people sign up. WHAT YOU POST IS NOT PRIVATE AND PHYLLIS FROM NUMBER 17 MIGHT FIND OUT.

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In response to the post above…what is your mothers maiden name, the three digit security code on your card?

I must be a very private person because nobody but nobody gets that information over the phone from me. Companies have lost sales from me becaue of it. Even my bank has been told where to go.

I buy my insurance over the counter from a broker.

Shopping is done in cash

On the odd occasion the bank has cold called me they are told to put it in writing and post it.

I’m old fashioned I suppose…but it’s safe that way!

Even charities have lost donations from me. Guide dogs was the last one…we only tke cards they told me when I tried to give them cash. You must sign up for a direct debit for a minimum period…etc. They lost a donation! No!

I suppose the answer to that is to close your curtains.

I honestly don’t understand why you’re jumping up and down about what you post being visible to the public. Genuinely.

Everyone knows that whatever is posted on the Net is there for ever and ever. This message is being sent out to youngsters all the time. However, these posts are (usually) anonymous and unless someone was to refer to where they live precisely, ie street name, town, county and country, how on earth can you be identifiable? I only know Paolo (real name? I’ve no idea) is from Canada because he said so. He may well be in Cambridge for all we know. I have said I am in Ireland, but am I? Is your real name Florence? Is mine Poppy? (No it isn’t actually).

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Hi Florence.

All I can say is when I googled self catheterising some 5 years ago I was horrified too that one of my posts appeared. I go very careful now as to what I actually post as there are certain things I would wish to discuss with friends on here but not have spread around the world. PMing is the answer I suppose.

Take care

Shazzie xx

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I really don’t see what the issue is here. A public forum is just that. We have the opportunity to post anonymously (although it can become rather confusing when several anons post on a given thread). We have the option to disguise our identity via user name. We choose what to share or not to share, bearing in mind this is a public forum. We even have the ability to have private ‘conversations’ with individuals if we choose not to post publicly. And lastly, no one reading this forum knows whether or not we are telling the truth.

I’m sorry that occasionally a web search brings up a link to this forum, but again, how identifiable you are is up to you. Obviously if one of my neighbours reads the forum and sees a picture of my cat next to a user name that bears some resemblance to my name, then they might conceivably find out some facts about my private life / health / drugs / whatever, that really are none of their business. But it’s my choice to be that easily recognisable or not and to share as much as I do. I actually can’t imagine why any of my neighbours would be in the slightest bit interested. And if they are reading this then I hope you’re jolly well ashamed of yourselves! But as for whether I’m bothered, I’m not.

Sue

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I dont think its worth getting so upset about. We`ve all learned something we may not have known.

Enough already!

pollx

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Didn’t mean anonymously, should have written disguised, as in hidden identity.

… wheras there were LOTS of animals hurt in the making of THIS email, especially small, cute, defenceless ones. whaa ha ha.

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i agree with your comment above, poll.

florence- in my last post, it was an attempt to lighten the mood, not poke fun at you. i also wrote it before i had read how upset you were in your above post as i wouldn’t have written it otherwise. i think we can assume that all comments that are light-hearted attempts at humour are just that; if they were anything else (abusive, personal or nasty), the moderators would act on your behalf, as would most of the other members. i have seen some really caring supportive responses from other members when someone has been the target of posted attacks via the forum pages. conversely, i have also heard of some nasty cowards sending abusive personal private messages, but thankfully they were blocked by the recipient, and the moderators acted when they were informed.

i have found this forum to be really supportive, human, good-natured, and very good-humoured; i hope you have as well

take care, fluffyollie xx

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Quite obviously I haven’t blocked you. There were posts found derisory and the block button sorts that ou so don’ be concerned.

Flo

I post under a real name but post under this pseudo rather than ‘anon’ when appropriate.

Russo

Florence, I think you have got it completely wrong and you’ve over-reacted.

If we are identifiable it’s our own fault for posting too many details about ourselves.

And if anyone is a bit concerned then it’s possible to post anonymously.

Cheers -

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I’m with Boudica. Enough already. Too much drama.

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