This forum isn't private...horrified.

I just googled problems weeing and MS and am astounded to find my post appearing for the world to see. Even Facebook and Twitter can be locked down so people post privately. There are no privacy settings on this forum. I assumed there was and an aghast.

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Same as Tripadvisor. That’s why I wouldn’t post a photo as an avatar and use a “screen name”.


One of the things about the Forum is that people vaguely worried about MS can come and look without having to register or even admit to themselves that they’ve been here. To do that job, it cannot be a private space (although personal messages from user to user are completely private). That is why most people prefer not to put personal identifiers on the open Forum - things like addresses or photos of themselves. Or full names, for that matter.



No offence. But…when one or more professionals on the NHS say you may have MS and then leave you high and dry for who knows how long; taking test after test with no promise of a 100% diagnosis? I have nothing to hide and couldn’t give a flying rats a£s who thinks what. This site is an absolute godsend to the massively confused and abandoned… just as it is.

We didn’t bring this on ourselves, there’s nothing we could’ve done to prevent this. They’re words (our truth) on a screen, what have you to be embarrassed about? I’m sorry if this seems insensitive but, haven’t we got bigger things to worry about? Will the next relapse put me in a wheelchair? Will I be embarrassed by collapsing in the street? Etc.



Perhaps these security measures should be added to the sign-up process with a short explanation? Just a thought for those that are unhappy (posted after the post below after some more thought, sorry).

Amanda. xxx

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I’m not worried about it being public, and actually am grateful that it is. I had been ‘lurking’ for a while before joining while I was ‘processing’ my diagnosis, and it was absolutely invaluable to me. If it’d been a ‘private’ forum, I may well have not joined. There’s also the question about how the wonderful admin peeps would be able to check the validity of every person joining the forum. Some people are MSers, others are suspicious and have questions, others are friends or family. So, it could be a private forum, but someone who knows you could still join as they’re wanting to learn more, are interested to see if you’re on the forum or any other reason, and read your posts anyway…

I would suggest that if you have something to post that you wouldn’t want people you know seeing, you post anonymously by ticking the box underneath where you type your posting. I think that’s one feature that this forum has that is an absolute blessing. At least no-one need feel they can’t post because they don’t want people they know to read it…


Presumably you can’t be identified by your choice of username (apart from Zebedee perhaps) and quite anonymous, so why the concern?


Whenever I have looked at this forum as a non member I had deliberately located the forum through the Society web-site. Thankfully when I joined it wouldn’t accept my real name.

The problem is I didn’t know individuals would be google searchable and that is what needs to be addressed. There needs to be a warning making it crystal clear to all who sign up that their posts are searchable and to edit their name and avatar accordingly. There is no such warning so people might inadvertently publish things they would rather not.

You might be identifiable by your photo Whammel. Unless that’s a male models picture you’ve pinched.



And I could be identified by anyone who knows my cat. And he’s pretty memorable!

Hi Flo, like you I was taken aback when I googled something re ms, but not on this forum. Then I saw my question come up where the world could see it, not just this forum.

It taught me a lesson.


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Frankly, the mere fact that people are able to post anonymously should shout loud and clear that this forum is anything but ‘private’.

For this reason, my username is not my real name and indeed, i am not rushing to change my avatar photograph for fear of being spotted on the streets.

Incidentally, should anyone be so bored as to Google my username, the contentious political rants posted around 2007 are widely out of context!

It is always safe to assume that as with e-mails, the words you write will likely be received by the last person you would want to see them and on the www, every contribution effectively lasts for ever. Contributions should be tempered with this in mind.


I KNEW I’d seen that photo before… it’s George Clooney isn’t it?


I now realise this is the same for other forums on other sites.

It would become a problem if somebody had kept the disease from their employer or their family and didn’t realise this forum was google searchable by individual.

I’m signing Flo in future


Hello Flo,

I just Googled “Florence MS” and all it came up with was Florence, Mississippi. Assuming that you’re not a State of the Union I think you’re pretty safe.


Anthony (whoops sorry, albrecht)

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My cat most certainly is not George Clooney, nor does he have any desire to be taken for some ‘actor’ type!! He has far loftier aspirations.

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As long as you don’t use your ‘real’ name as your user name you’re not going to be identifiable and there shouldn’t be a problem.

However you have given a date of birth in your profile. I would consider removing it.

Also no one should give personal details re place of work or type of work in a message.


There was I recklessly enjoying a cup of coffee in Helsinki and not one person recognised me. Terribly disappointing, but I am over it now.


I’ve long worked to the principle of “If you want something to stay absolutely private, don’t put it on the Internet - at all, anywhere”. Because it may crop up somewhere you don’t expect it. So I don’t. I do appreciate all the support from people on here, and it’s always good to let off steam if something gets to you, and not take it out on the people you live with… I just want to chat with other people, who go through the same embarrassing things happening, if only to reassure myself that I’ m not the only one going through this, and others have it far worse than I do!

Fracastorius (Jane)


All comments, inclusive of my own diagnosis, are purely hypothetical and any similarity to actual persons, either dead or alive, is entirely coincidental.

Also, no animals were harmed during the making of this forum post.