New forum, how are you using it?

Hello all

I have been wondering how people are finding the new site now we’ve got more accustomed to the format. This is not a moan about the changes exactly, it’s more of an enquiry as to how it’s working, what has changed for you, what the new users think, and what’s happened to some of our old timers.

These are some of my questions:

  1. On the old style forum we seemed to use the various ‘boards’ more than we’re doing now (I think). So people stuck to the PP or EL boards. Is it better now that we are more of a general group? Or are some people less confident because they don’t have the same ‘safe’, familiar home where they knew everyone? I’ve been wondering partly because some of us have begun having conversations with people we hardly knew because we stuck to the older possibly more divisive boards. I think this is generally a good thing, although threads don’t ‘flow’ as smoothly. What do you think?

  2. Is the new ‘Welcome and introductions’ board useful for people new to the forum? Or do they write a few bits about themselves, get a few responses (hopefully), then wonder what to do next? Is it more useful to just start out on ‘New/before diagnosis’, ‘Symptoms and treatment’, or ‘Everyday living’? Your input as new members to the forum is particularly useful for old timers (like me!)

  3. Should we be lobbying the administrators to ditch (mothball maybe) some of the older boards in favour of some different more experiential types. In a way, using the new ones like ‘Symptoms and treatment’ & ‘Finance and benefits’. Probably as well as ‘Everyday living’ for more general topics. I think the ‘New/before diagnosis’ and ‘Carer’ boards are essential, but do we need to have distinct boards for the different types of MS?

  4. Related to the previous questions, what do the old users of the Primary Progressive board think about the lack of use? Are there more people missing who were users of that part of the forum more than others?

  5. And on that note, who is missing? I know some people like Boudica (Bouds) have had trouble getting in. But has that never been resolved? Some like Scudger made a definite decision to leave and made that public. Jactac had specific problems which must have irritated the hell out of him, hopefully he’ll be back. Others have just vanished. I know that Carole58 (Catwomancarole) has had trouble with her computer. Hopefully she’ll be back at some point. But there must be plenty of others, either with trouble logging in, difficulties with the changes, or some other problems?? Does anyone know?

  6. Does anyone have any other thoughts, questions, points that we as a group could raise with Admin?

Are these questions that are relevant to you or is it just me wanting to have the forum a bit more organised rather than have posts just pop up seemingly at random? Does everyone (except me perhaps) know where to place a new thread? And are we inclusive enough, especially for newbies?

Am I just rambling? Have I finally descended deep into the Fog? Or are these points that others would like to comment on?

Sue x

I’m still moaning because I still don’t like it and still have trouble moving around in it. About all I can do is respond to new posts and private messages.

You have some good ideas, but I really wish they’d get rid of the massive white background. I think I could accept the rest of it then.

Truthfully i LOVE IT. I find it easier to navigate i forgot what the old one was like. I like the idea of adding images easy too and using more fun emojies lol. My go too in the morning is my profile picture to see if anyone has answered any posts i am following then i click the 4 horizontal lines to see if there are any new posts on any of the boards.

yes the white can be a bit off putting but i have my laptop on night vision which cuts it back. You can change your background to dark if it helps.

PPMS. I found even in the old forum it was always quiet. PPMS is rare so perhaps not so many people diagnosed with it.

i GO TO daily living with MS as it is for all types of MS. I never think of just using the PPMS board itself.

I didnt like it all at first but it was either a case of dealing with it or missing my friends.

I think overtime new ones will replace old ones and it will grow strong again in a community.

there are still anxious people out there who need help whether they are new or old.

I dont have time to expand too much energy on why the forum needs changes as others may not have a problem. I remember when the first one i joined was changed way back in time and we all had issues lol.

I actually LIKE this new format. sorry but i do. I find it easy to navigate.


ONLY BEEF is i cant delete old messages. Not sure why not it seems silly to me. surely removing them would release some server space.


I still don’t like it. I don’t find it easier to use, probably because I’m not using it correctly, I no longer have the concentration or the energy to even try to use it correctly and I’m sure I’m not the only one.
The stark background makes it difficult even though I’ve adjusted the brightness of my iPad.
I still log on most days but I’m sure I miss more that I see.
Sorry Sue my criticism is not very constructive :grinning:
Jan x

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Hi Sue,
I’ve answered this in the PPMS section and am copying it here as I really don’t know how to navigate the different sections.

I’m still getting use to this new site but am finding it difficult to find which section themes are under what section, so just look on the overall messages. It would be good if there was:
one for new and undiagnosed
one for DMDs, drugs and treatment questions
one for everyday living
I’ve never understood the differentiation of RRMS, SPMS, PPMS
one for caring for people with MS

I use to be an avid contributor to the original site before it changed to the last one (which I never really got use to and a lot of the friends I’d made were missing off it too). On the last site when it was first changed over I received some untoward, uncalled for messages which really hurt me, so I stopped using the last site. It has taken me many years to feel confident enough to come back to the forum.

But I’ve decided to join in again on this new site and am hoping for a better experience. It is hard to navigate though and I’m hoping to get use to it. I do feel I am making new friends but also miss friends I’d made before which are no longer on line due to these site changes. I am also learning as yesterday Crazy_Chick helped me to figure out how to put pictures on and I loved that aspect - much appreciated CC.

I did ask the administrator to contact Bouds to help her to get back on line, but have had no response and that it very disconcerting. Bouds is missed so much but we can’t seem to get them to help gain access to the new site.


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Hello all,

How I’m using this new format forum? Barely!

I’ve been looking at the latest posts, but not much more, as there’s a mixture of new posts and old ones throughout, including older posts mixed in with the latest and off topic posts listed under others (confusing the **** out of me)

I know I’m just one of us MSser and get that others have been around here for a lot longer than me, and don’t expect replies to every comment made but still feel like I did the other week after the format was launched (brand new recipe means somethings has been ruined)

All I can say is “it wasn’t broke and didn’t need fixing” but the whippersnappers love changing everything! I’m not saying “I’m off” but I’m very concerned that some of us like me, without any support might be less inclined towards the new format here!


Hello NM

Thanks for replying. I know the brightness is still an issue for many users and am pretty sure admin know that too. Hopefully they should (eventually) come up with a solution. (Surely it can’t be that difficult to sort out?)

One reason for my writing this thread was to find out how people are using the forum now. It was less of a moan (on my part) and more of a questioning how the changes are affecting people and whether there are ways we could suggest to make it a bit easier to navigate and use effectively.

Whatever I come up with I will post on here as well as contacting admin.


Hello CC

Strangely, I had been aware that you are now loving the new format!! I think you might have mentioned it :grinning_face_with_smiling_eyes:

I am using this new format much as you are, whizzing up to the top right corner to see what new messages are there. My query with this way of working is basically about whether it’s as effective for both new members and some of the oldies. It also seems that it’s quite easy to miss posts. Either because I’ve zipped past them without properly reading or because not everything seems to be highlighted as new.

We’ll see what others are thinking anyway.


Hello Jan

Yes, other people are equally put off by the brightness. I do hope the site developers can sort that out.

My biggest reason for posting this thread was because I’m a bit worried about a) some of the old forum members having trouble navigating, and b) new members feeling they are welcome.

I wonder if there’s anything that can make life easier?


Hello Maz

I’m really glad you have come back. Your knowledge and experience are much appreciated.

I was most concerned about old users being unable to navigate this format, the number of different ‘boards’ making life more complicated, the experience and welcome offered to new members and just generally how we are using the forum these days.

I’m bothered about missing people too. As I said I know about a few missing people, but there are some we’re not even mentioning, it’s easy to forget.

Last night as Wales were playing football I wondered suddenly where Cracowian/Krakowian is. So that’s another name to add to the list of the missing. I wonder about some of the people who used the PPMS board too, like Shelly (on the beach).

I will be feeding comments to admin (in a few days when a few more people have maybe had a chance to add their thoughts.


It’s the only one I’ve used so still getting to know it.

Hello Dolly (you must get that said a lot!)

I’ve been confused at times by old threads suddenly popping up undress current ones. Seems a bit random to go from 2021 to 2019 or whenever. How are the old additions selected anyway? Completely at random by the program?

Newer members views are just as important as old timers (in my opinion). It’s the new people’s impression of the forum in general that sparked me off writing this thread. I don’t want people to find it unfriendly or ‘cliquey’.

In many ways, new members views are perhaps more important than the oldsters. After all, someone recently diagnosed might need more support and handholding.


As ever Sue you make some interesting points and ask some good questions. Probably too much for me to process in one hit !

I am a bit of a “fence sitter” there are bits of the new site I prefer and there are some bits of the old site that I miss.

I actually like the more vivid colours , I love the improved ability and ease to add external media (pictures etc)

I do think that it was easier to follow the sequence of a conversational thread on the old site. (Not sure what steps I need to take or how else to make this easier)

As for the PPMS forum , in my experience that was always a bit quieter, and I did wonder if it needed a separate board.

I think that the Welcome & Introductions board makes for a very good place for “newbies” to dip a toe and see if the established posters are suitably welcoming. Personally I have enjoyed the variety of styles and opinions which I reckon makes this an interesting and inclusive environment.

Not everyone will have the time / inclination / patience to move from one environment to a new one, but I did hope that Admins might have time to handhold people who might be struggling with the changes.


It used to be a good place to chat and ask for advice…along with more lighthearted discussions of music and books and all sorts. But now ancient posts seem to be randomly reappearing and people who we’d got to know are disappearing. Don’t know quite what to make of it!

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I have an advantage i used to teach I.T, and WWW way back when lol.

I was one of the beta testers for this NEW website and all you have mentioned i actually picked up on and said I didnt like it. I am assuming they went with majority which if I am right would mean I was a minority.

I find it fiddly and confusing BUT teach this stuff for 10 years my brain wont let it beat me.

I have already made it cleared to the developers most of what you said.

the white they have allowed us to change preferences.

What i do find annoying is at the beginning they could have easily had an area where we could have transistions from one to the other.

I have gotten used to this forum now, and anyone who is struggling (i have had contact) i am more then happy to help privatly.

the point is it isnt going to change. It costs a huge amount of money and time to get a new forum active. It was tested before it went live.

the majority must have okeyd it, perhaps they should have invited more of the older crowd. I dont know but my new motto is if i cant change it i am not stressing over it.

I cant even remember what the old one looked like.

I am trying to concentrate more on the positive new things it gives me. Yes i still find it a bit muddly i have to say but i can go straight to new posts.

whilst we discuss this we are not checking on new comments from people who need us. that is how i feel lol.

As we get older change is hard without doubt and it us oldies that are struggling with it, i belong to a few MS forums and this one is actually one of the easier ones lol.

It will get easier and hopefully quietly they will adjust some issues.

LIke DELETING posts and messages which makes no sense to me lol.

the white can be changed in preferences.

BUT for me its tooooo dark lol.

ah the joys of modern technology from the girl who doesnt even have a SMART PHONE or T.V. lol. xxxxx it will get easier. xxxx

Hi Sue,
Thanks so much for doing this. I hate this new site. My comments are the same as what Jan has said - sorry I’m a copy cat :cat:

I am not on here nearly as much as the old site. It makes me dizzy and sick and as all have enough to cope with. Find it quite ironic this site supposed to help makes me ill.

However I think :thinking: what I have to do is put the time in to get used to it play around and see what works.

I would like to find an old post I did many years ago which was titled So upset by cognitive testing - can you please help with this

Thanks again for what you are doing. Where is bouds? I miss her or perhaps I just haven’t found her on this tricky new site!!!

Min :purple_heart:x​:purple_heart:

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No no no this is really infuriating when I sign off it is
The second Purple Heart instead of being an actual Purple Heart goes into writing Purple Heart

flowerfairymin I clicked on the magnifying glass icon
then typed ’ So upset by cognitive testing ’ and it took me to your post of 2012.

If you are struggling send me a message and I will try to copy your post and message it back to you.

Hope this helps

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Thank you all so much for thinking about my questions and commenting. Thanks to Charlie Mac for joining in too. It’s often easier to get used to a changed site when it’s the only one known.

Initially, I wasn’t really expressing complaints about the forum, just thinking and questioning the way it’s set up and how we are using it.

I know some people are still really hating it (Jan, Dolly & Min amongst others). Some are like Mick & me, liking some elements and disliking others. I was always envious of the way some people (Mick!!) could put his lovely photos on the old site. Now I can put images on here (not as pretty as Micks fabulous photos). I also rather like the emojis and some other elements of the new. In particular, I’m not losing great swathes of text that I’d spent time writing that just suddenly vanished (that was something I hated about the old version; drove me nuts!)

But, there are aspects about this new site I’m less keen on. One thing that does bug me is the confusing way of listing additions to threads in sequence rather than being able to specifically answer one person.

Also, the way we’ve kept the old boards and added more. This seems a bit odd. Either we all use the entire forum as one, or we retain for eg the PP board, which seems to be getting less traffic than ever and perhaps makes the old users feel like they’ve lost their comfortable ‘home’. But that’s just my feeling, none of the people with PPMS who’ve answered me have a problem, so let’s forget that.

I doubt that there’s absolutely no way of making any further changes to the site now it’s complete. But I’m no expert so perhaps you’re right CC. I actually was asked to look at the test site and comment just as you were. I had trouble getting in and was experiencing a bit of a problem with my eyes for a while (drug reaction not strictly MS) so didn’t nag Admin to sort out my log in. If I had, maybe another voice added to yours might have made some difference, or maybe not. It’s too late now though!

I’m glad Mick showed you how to find your old thread Min. (I’m going to add to your post - it’s an interesting thread, cognitive testing is an odd and irritating thing.)

I like your Purple Hearts Min. :purple_heart: :purple_heart: I have no idea why they’re not quite working for you?!

(Writing this is getting difficult. My :cat2: is trying to help! Nudging my hand; after a lap or just some serious attention! Oh that’s better, he’s claimed ‘his’ wheelchair as it’s one of his favourite sleeping spots!)

I too feel that some of our old timers have slipped by the wayside. Maybe we could start a ‘Missing’ thread - all add names to the list and ask Admin to get in touch with them, try to get their log ins sorted - assuming that’s the problem. Obviously, sometimes people just don’t like change (I initially hated the previous forum format and went awol for a few years!) and use the change as a way of breaking the forum habit. So some may have just chosen to distance themselves. Others maybe can’t get in and need help.

I do think that the more we use this site the easier it gets. It really doesn’t seem as friendly as the old. But that may change as time goes by. Soon perhaps there will be less comparing to the old site and just getting on with this new one.


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I really like the idea of a “Missing” thread. At least someone can let those people know that we’ve noticed their absence and would like them back if they feel so inclined.

I just don’t get why they’re having so much difficulty getting Bouds set up. They’ve had plenty of time to work on it.