Can’t work out how to use the forum, so I’ll do this and see if it works! Can anyone point me in the right direction as I haven’t used this for years & it’s totally changed
Hi there, Sorry to hear that you’re having difficulties using our forum. Any questions please feel free to DM me and I’ll help as best as I can.
Oliver - admin
The old forum did work really differently to this one. But it changed about 7 years ago. Eventually you do get used to the format.
It’s organised in ‘threads’, with the originator of the thread writing an initial post, giving the thread a relevant title. Other users can then respond to the post in a straightforward answer (like Oliver and I have done), or can ‘reply’ to a secondary poster directly if they’ve said something that seems to need a direct answer. That will give a sort of ‘staggered’ look to the thread.
You can search for existing threads, using the ‘search’ box, or just page through the recent posts. Feel free to add your thoughts to the existing posts, we all learn from each other.
If there’s a post that seems to you to warrant a personal, off forum message, you can send a Personal Message (PM or DM) which will only be seen by that person. They’d be notified that there’s a message for them by email.
Welcome to the current forum. It’s a friendly and supportive place.
It used to be a lovely friendly and easy to use format. I don’t know why they turned it into this characterless, clinical looking format.
one thing they didn’t fix was the la k of security on this forum. It’s open to being looked up by anybody on the Internet. Anybody can look at what you post and take the information. I was furious a while back to find some of my posts lifted and reposted on treato and they are still there.
There’s no privacy here so be careful what you post.
Florence. I remember your post well. You were jumping up and down, metaphorically, about it,while everyone pointed out that, unless you use your actual name and refer to your address, location, street names, local hospital name, you are actually anonymous. I’m assuming your real name is not Florence and that is not a photo of you.
Thanks for your feedback, Florence. We are doing are best to make the layout much more friendly as well as making it accessible on mobiles and tablets - so, please bear with us.
We appreciate that the forum is public and threads/replies can be viewed as such, but this feature is useful for people who are new to MS, who can use and search the topics which our members are discussing which may be of help to them. There’s a lot of extremely helpful members and content on our forum, and we feel that this is also benefit to non-members. Creating a unique username and with an anonymous posting, we feel that this eliminates any potentially identifiable information - we also remind our members not to disclose personal details in posts or via PM’s.
With regards to the posts you mention that were lifted, would you mind PM’ing me and I will be happy to look in to this for you.
Oliver - admin
I’ve been reasonably relaxed about the amount of personal information and experiences I have shared on this public forum. My name is actually Sue and as I’ve said many times, I live in Sussex. If people who know me want to look up details of my colostomy, my use of ISC, my symptom and treatment history, or in fact anything about that I’ve shared on here, they are free to do so.
I do feel that by sharing our experience of MS on a public forum, we are doing a public service to a wider audience than just the members of the forum. Also the many people who have joined but are too shy to post themselves. In addition, we are a resource for people claiming benefits and those of us, like myself who are knowledgeable about such matters are, in general happy to suggest website and give general advice to others less knowledgeable. I am happy for people to know my experience and have no problem with it being a public access forum. The only thing I would not share is private and personal information about anyone else, including my family and friends.
If anyone has a problem in sharing information they have the option of using a different name than their own (which is I believe what many people have done), or of course, not sharing anything they feel should remain personal and private. That is their prerogative and one which I understand and appreciate.
I believe that in general, the users of this forum are genuine, friendly and honest. In fact I believe that most people are genuine, friendly and honest. If information posted on here is misused, then that should be brought to the attention of the admin staff, like Oliver who I am sure would investigate on our behalf as he has said earlier.
That’s been my experience so far, Sue. Having said that, I just deleted a reply to a post because I realised I didn’t know who i was talking to. I felt bad about that as the person sounded like they genuinely wanted to share experiences and maybe get tips about a fairly personal aspect which affects some people with MS. But then I looked again and I thought what if that’s not what it looks like? I don’t feel good about deleting my reply, but I admit I felt confused by the context. I think this is part of online communication generally. I share your feeling that this forum mostly feels like a safe environment, but I also think people have to protect themselves online wherever they are. I agree with your last 2 paragraphs which I think are a very fair and balanced summary relevant to the question of how we protect our privacy and balance that with the benefits of sharing information and experiences.
I think the decision that the administrators or whomever has made that there is a “delete” button on posts and replies is the right decision. Because people are talking about potentially sensitive issues, it’s essential that everyone can delete their own content if they want to do that. Unfortunately that sometimes means that other people’s content (replies) will also be deleted, but that’s a necessary side-effect of respecting people’s right to protect their privacy.
I don’t know the history of this. But surely it is a fair assumption that if you post here the content won’t be posted somewhere else without your consent?
I understand it’s a public forum, but if someone wants to share another person’s content outside of the forum then isn’t it just courtesy to ask them if that’s ok first? Personally, I think it is more than that as well. I’d feel morally obliged to get someone’s permission if I intended to re-share something they’ve posted in this environment, which they presumably consider a safe place to post to. It doesn’t follow that because the forum is public that the person would be ok about posting the same content elsewhere.
Example: a conversation I have in a cafe takes place in a public space, but I’d still feel that my privacy was violated if someone recorded it and posted it to YouTube without my prior informed consent.
As you said, there’s a delete button if you feel you’ve overshared with a stranger (and I can imagine using it if it’s someone new to the forum who wants private and personal information - I’m thinking of one post in particular which I decided not to reply to today!). Also an edit button. Which I use regularly when I read back my post.
I didn’t say, but thought later, there’s also the opportunity to post anonymously if it’s a sensitive subject.
So in general, there are safeguards against sharing too much personal info.
On this forum, someone recently asked me if they could post a link to content I’d posted here on another platform. I think that was the right way to do it and I said, yes, that’s ok to share that. On that occasion, I was more than happy for the other person to share my link, but I recognise there might be situations where someone could be quite upset and surprised by having their content shared, so I was very appreciative that the person asked me first.
I don’t know if there is anything in the terms and conditions of the forum that says we should do this, but I think it’s a necessary courtesy to respect one another’s privacy by getting consent before sharing content on other platforms. Maybe it’s something that we should be explicitly asked to consider, so that everybody knows what to expect.
Thanks Sue. I agree with you on all of this. I also think that the post you decided not to reply to might be the same one where i deleted my reply. At the same time, I’m also wondering if I have short-changed someone by deleting my reply to what might have been a genuine request for information. The post concerned a subject that is difficult for people to talk about, so am I guilty of making that worse by letting myself become “spooked” by the topic of the thread? (It wasn’t just the topic. I checked post history. All the same, people have to make a first post about something).
Also, I’d like to thank the forum admins for the delete and edit buttons. They’re really important additional protections for people so that they can remove anything they regret having shared.
Absolutely. I recently asked someone permission to share something they’d written. They were happy to share it. To me it’s only courteous to ask permission to share anything written by another person with people outside of the forum. Sue
I’m also aware that my own post history is patchy. I joined and made some posts several years ago, but then was inactive on the forum for about 2 and a half years. I understand that trust is an issue on online forums, so I do try to be aware of this. I once asked a question about RRMS versus PPMS (at the time I had 2 different neuros who had each given me a different provisional diagnosis and I was genuinely confused by the conflicting info in my own case). But my question was “what is RRMS actually like?” and I think it maybe sounded like I was fishing for experiential info. I wasn’t getting enough practical info from my neuros so i really did want info and was confused by what I had been given by the neurologists. Basically, I think I’m sometimes a bit too sensitive to all the possible ways people might interpret me and I might interpret them, and this can become counter-productive, because communication can seem “unsafe”. Maybe that’s something we all go through. Some experiences are just difficult to talk about
Hi there. As Sue said, there is always the anon facility so if you want to reply but are unsure, feel free to post anonymously. I don’t think there are many places where this is an option so make use of it!
Hi Space monkey. If I remember correctly, the post Florence refers to was one where she was “horrified!” to have Googled something to do with MS and found her own posts from the Forum came up. There followed a heated debate about the privacy of it. Common sense is priceless at the best of times but in the world of Internet it’s paramount.
Thanks Sue. Yes, I agree with this completely. Sorry for jumping in to this topic. As I said below, I’ve been away from the forum for 2+ years and I don’t know the history of what was discussed. I have definitely got the impression that this is a respectful and courteous forum, while understanding that people might still be nervous about sharing sensitive stuff online. Even being pseudonymous, there is always the awareness that it’s possible to give away identifying details without meaning to. However, like you and others have pointed out, there’s also a totally anonymous option for posting here. I’ve never used it, but I can see the value in having that.
Ah ok, that’s a Google thing then.
There is some info which Google publish on how to stop pages from showing up in their index, which I expect the forum admins are already very much familiar with, but the methods used to block search engines are subject to change, so you could imagine that with the best will in the world, there might be occasional incidents where pages get included in search results, even though someone took care to try to keep those pages out of them.
It’s possible some pages slipped through and got into Google’s index, even though they were hidden from search engines. The following support info from Google explains one way that this could happen.
When other pages (anywhere on the web) contain links to pages which the web crawler is blocked from accessing, it can’t see if those pages are marked with a ‘noindex’ tag (i.e. to tell Google and other search engines not to return those pages in their search results). So sections of a site which are hidden from search engines can still end up getting added to Google’s index even though the search engine was blocked from crawling them.
This is slightly counter-intuitive, so I expect it’s something like this responsible for some forum content turning up in search results. (In other words, it sounds like it could have happened accidentally).
OMG my mind went ‘blah, blah, blah’ midway through your last post. I have a reasonably sensible mind, but computer stuff makes my head want to explode.
I just accept ‘that’s a Google thing’.
Ha ha, yeah, that’s the important bit. I mainly meant to say that it sounds like what happened could easily have been the thing Google was describing on their site, so just an accident that is likely to be fixed now. Hopefully that would be reassuring for Florence or anyone else who had been worried about their post content turning up in search engine results.