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DaiTheDragon
19th April 2015, 21:47
I have been thinking which is unusual for me.
I wonder if we could have a category for delicate subjects. Talk about things that might otherwise
upset newcomers to the forum. I think it would be a good place for straight talking no being diplomatic, I am talking about MND of course not disagreements between members.
I have run a couple of forums so I know you can lock a category until someone has made 25 or 50 posts before they can view or post in that category .
What do you think
David

Terry
19th April 2015, 21:59
Hi David;

Sounds like a good idea as long as it's kept for certain delicate subjects. Too much stuff on it might stop people looking in or perhaps not joining. What subjects can't be discussed on an open forum and would you like the posting laws changed for that section?

Love Terry

Steve
19th April 2015, 22:03
great idea, the excuse for sanitising the forum really p'd me off, this is a good solution.

Nettie B
19th April 2015, 22:07
Excellent idea David. We have had to talk about some sad stuff lately and I must admit I've wondered if I've said things that might be a little scary. But as you say, we need to be able to talk about the delicate issues as we need to have information about such things and we need to be able to offload.
Go for it !! How are you feeling now David? XX Nettie

Night walker
19th April 2015, 22:38
Hello David,

Hugs as always.
I think that is a terrific idea and I have to say I have found the recent posts invaluable and more informative than anything you find elsewhere but I can understand how frightening they could be for some one new.
This gets a big vote from me.
Thanks for suggesting it.
Hugs
Sylv xx

BlueEyesOhio
20th April 2015, 00:42
I vote yes

Lynne

willsandco
20th April 2015, 07:02
Yes, that is a good idea if people want to unburden themselves of stuff that makes them feel especially wretched. Everyone knows that this disease can bring some really dark days with it. We "oldies" can choose whether or not we open the thread. Newcomers to the forum will know the score and, if they want to avail themselves of it, will have to post quite regularly so we all can get to know them -and they can get to know us. Everyone wins both ways. I think Claire would approve of that, don't you? It is a good idea, David. Lots of love. Joycie xx

Jock
20th April 2015, 07:36
Recently I got to thinking about what I came to call 'the death watches' here. Three people all clearly nearing their end. Each morning became about checking to see if they were still alive. As heavy as the subject can be I still learned how my own death may go and that's no bad thing in respect for learning further about MND.

I'm with Terry when he asks.......What subjects can't be discussed on an open forum and would you like the posting laws changed for that section?

crackers
20th April 2015, 09:19
Good idea David frankness may help with the issues of the future and the fear of dying.

Kelvin

Terry
20th April 2015, 10:28
I think that all subjects can be discussed on the main open forum and not in some hidden place. What the restricted section would be great for is for background personal information so that we can understand the reasoning behind some of peoples posts. I am worried that a restricted area will be used by us too much as it's nice and convenient, however a more background knowledge on people would give us so much more understanding and our dirty washing can be kept a little more hidden.

I do think that the idea is good, Terry

Steve
20th April 2015, 11:08
It depends what sort of forum we want, in David's thread Claire said she would sanitise posts that would upset newcomers to the site. I disagree with that view totally, we should be free to share our experiences, good or bad without worrying about the impact on newbies. I spent 5 days in hospital recently and had a bad experience. It might upset some to read but it would help others if they were ever admitted. I have held off posting because I want to see how this discussion pans out.

If the mods want to go down that route then a separate section might be the way forward.

Graham
20th April 2015, 11:26
Hi David,

Great thinking!

This is such an important subject.

I can make a few observations: -

o Build-UK MND forum is more progressive and is moderated principally by a person, Stuart, that has MND. He understands that MND creates very challenging situations and is tolerant of such posts.

o Previously, we have discussed assisted suicide on here and then some of our friends then went on to take their lives. So it would seem that certain taboo subjects are allowed on here.

o When I was being abused in hospital it was mental torture for me to find my truthful accounts of what was happening to me to be removed from this forum. I remain resentful of the MNDA for that and I am committed to taking the MNDA to task over what happened.

o Religious, racial, sexual and any personal harassment must remain the only moderated content, yet there have been occasions where personal harassment has gone unmoderated.

Terry
20th April 2015, 11:30
Hi Steve;

Most hospitals don't provide enough understanding, care, time and help for us. Please report things to Mnda connect as they wanted comments on them.

I do understand your comments but posting on a restricted section we only reach perhaps 30 people where on the main site will help perhaps 200 or more.

Most things can be put and will remain on the main site. You can always title the thread this will be upsetting for most people.

I think you can use the UK build site and post most things but I don't think that's what David wants.

Regards Terry

Steve
20th April 2015, 11:45
Hi Terry

I take your point but I saw Claire's comment as a major shift in direction. I want to post in the main section but don't want distressing content removed. I agree with Graham's post, only personal abuse should be modded, we live in a Charlie Hebdoe age but I feel like I can't post on the forum due to over moderation.

Ellie
20th April 2015, 12:53
I don’t agree that certain subjects should be in a restricted area, like they are someone’s dirty little secret. There is an area for such posts already; it is called “Life with MND”.
I certainly don’t see much point in a forum which is sanitised to the point where one cannot tell the truth or find out the truth. There is always need for moderators, but moderation has to allow for a “warts and all” attitude in all subjects. Whose sensitivities need to be protected??
This forum is often the only source of information and comfort to many members. If the post may be upsetting to some, a heads up could easily be used, as in some of the MNDA publications. Please Moderators, do not deny us this freedom. I ask again Whose sensitivities need to be protected?? Not mine.

Ellie.

ccinjersey
20th April 2015, 13:20
I think it's a great idea as well. It would really be 'keeping it real', but along with the positive to have the freedom to express very sensitive subject matters will also come along the negative.

There will always be those that will be offended or unable to cope with such sensitive subject matter, and should have a warning of some type in advance about the subject matter so they can decide if they want to proceed.

Personally I don't think the moderators should change their standard of rules depending on the subject matter, this could create a forum that people might shy away from instead of embrace for it's level of comfort and support.


CCxx

Jan
20th April 2015, 13:33
I find this forum so supportive and informative, personally I took great comfort in reading some of the end of life posts, it helps me and in am sure many others to know that my end game may not be that bad, let's face it, the minute you are diagnosed you know that you are on borrowed time and it's up to you how you approach it and what assistance is out there, sanitising to make posts and the forum to make it more palatable just isn't right, MND does not go away when we turn off our computers and it is very difficult to find someone to talk to face to face who understands what we and our carers are going through

Claire McArthur
20th April 2015, 13:55
Hi all, I just want to clarify that there has been no change in moderation on the forum, either for new comers or for our regular users.

We have terms and conditions which should maintain the standards of interaction on the forum. It is very rare for us to take down or moderate posts.

It is your forum and we try and facilitate an area where it is a safe environment for you to share your experiences of MND, both good and bad.

I can look to see if there is any additional functionality we can add to have more difficult conversations in a different area, but I think that it is only possible by having an additional thread, the pm is the facility that more private conversations can take place. I personally think it would be a shame not to have the honest conversations in the main body of the forum.

Best wishes

Claire

miranda
20th April 2015, 14:49
Even as an "0ldie" I sometimes cannot face reading some posts when they first appear and have to wait until I feel I can deal with the content when I am alone. There are a few threads I usually never read. There is surely a danger if moderators give us the right to determine what is unsuitable for all to read. As someone with MND, what upsets me most is reading posts from carers but I value the insight it gives me.

willsandco
20th April 2015, 14:50
Steve, do post and tell us about your hospital experience. Forewarned is forearmed, so they say, don't they? Much love. Joycie xx

Steve
20th April 2015, 15:13
i will tomorrow, i will have a bit more time.

pete
20th April 2015, 16:43
i will tomorrow, i will have a bit more time.

Hi Steve,

I doubt you will be having much time to spare ,with the new addition and wife returning, unless you get one of those babies that sleep and are golden, I have to say ours didn't sleep much and now she is getting some pay back because her own three year old can go all day and part of the night without much trouble. But our granddaugther has been the best treatment I could have wished for.

Steve
20th April 2015, 18:17
yes, they are great motivation for sticking around.

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