Forum posts on facebook

Andy12345 · Jan 23, 2015

if i can be serious for a change....

what i think is offensive is not the need for new people to be helped by advertising DCUK on Facebook, that is fine, then newly or oldly diagnosed will hear about it and can come here for support, the problem is when people come here, they are comfortable to share their worries and personal feeling etc with like minded people, people in the same situation as them, not people who are likely to ridicule them, so to post stories of a personal nature on Facebook is wrong in my opinion, but if they are the rules they are the rules, it just means when we post we must try to remember that any person in the world may get to see what we write, not just the people sensitive to our situation, this is a shame in my opinion as its really helpful to open up sometimes and get things off our chest, sometimes things we wouldn't share with our families even, now we will have to be more aware and therefore less comfortable

Andy12345 · Jan 23, 2015

AndBreathe said:
To be honest, I think a poll would achieve little. It might show the total of those who participated in the poll who weren't happy, versus those who are content. But, I am pretty certain it would change nothing. The Ts & Cs we agreed to are pretty standard. Even if 200 forum members respnded to the poll, what percentage is that of the membership?

The collective "we" have to get our heads around the absolute fact that anything we post on a forum or the internet in general is no longer our own to control.

Expecting Diabetes.co.uk to change their Ts & Cs is a potentially immense task, probably involving enormous costs; money that could be more usefully spent elsewhere.

To be honest, my gut feel is if the net of this forum is cast less wide, we could be effectively restricting access, which would sadden me. I have got so much from this forum, and so many more people deserve the same access to the same wonderful information, and people.

For those who are feeling exposed, perhaps taking down personal photos and a change of user name would effectively wrest greater anonymity out of the current situation. I appreciate we would need the goodwill and support of Admin (@Giverny ) for the name changes, but I think if a user name is changed, the change also re-labels all historic posts at the same time. I wonder if @Giverny would confirm that fact?

but why can't the Facebook thing be in the form of an advert? why specific posts need to be posted i don't know, its a bit like tabloid advertising if there is such a thing, i don't know maybe that is the most effective but it seems a little too mercenary for a health related forum

poshtotty · Jan 23, 2015

AndBreathe said:
To be honest, I think a poll would achieve little. It might show the total of those who participated in the poll who weren't happy, versus those who are content. But, I am pretty certain it would change nothing. The Ts & Cs we agreed to are pretty standard. Even if 200 forum members respnded to the poll, what percentage is that of the membership?

The collective "we" have to get our heads around the absolute fact that anything we post on a forum or the internet in general is no longer our own to control.

Expecting Diabetes.co.uk to change their Ts & Cs is a potentially immense task, probably involving enormous costs; money that could be more usefully spent elsewhere.

To be honest, my gut feel is if the net of this forum is cast less wide, we could be effectively restricting access, which would sadden me. I have got so much from this forum, and so many more people deserve the same access to the same wonderful information, and people.

For those who are feeling exposed, perhaps taking down personal photos and a change of user name would effectively wrest greater anonymity out of the current situation. I appreciate we would need the goodwill and support of Admin (@Giverny ) for the name changes, but I think if a user name is changed, the change also re-labels all historic posts at the same time. I wonder if @Giverny would confirm that fact?

I too have received a tremendous amount of support and knowledge from this forum and in time have tried to give back by sharing quite a bit of personal information about myself, including, when asked, posting photos of my grandchild. I'm appalled to think that my posts and photos are being shared more widely than I intended. I have felt part of this community but have now lost all confidence and trust in it - not the members, but those who decide what happens to our posts without advising us.

On 1st April last year, shortly after joining, and after I realised I was wanting to be more active as member, I PM'd the Administrator and requested a change of user name. It never happened, yet my message is showing as sent.

Last night I once again requested a name change and removed all my personal stats and info from my signature so that hopefully nothing can be traced back to me personally, my family, my business or my website. I'll be interested to see what happens

Robinredbreast · Jan 23, 2015

I have now mentioned an accept or decline box/click on button, also admin's email address, but as yet nothing, but it's still ear;y. A poll is needed for members, older and new. Take it to a vote, and as @Andy12345 said, facebook could be shown as an advert ?
This forum is huge, one of the largest, so lets have a sensible vote on this. It's the members who make a forum and without us diabetics, parents and carers, the forum wouldn't exist as a support forum.

Looking forward to receiving positive input from @admin

Best wishes RRB

Pollylocks · Jan 23, 2015

I don't like Facebook, deleted from it a few years ago, just have a pseudonym to pick up photos from family and friends.Bbbut I don't think we can do anything about it due to the terms and conditions on here which I don't think are much different from other public forums.

I haven't been in to have a look and I know I'm in the minority judging by previous posts but I can't really see the problem. I mean, who is going to want to look in there...? Surely it would only be diabetics and friends and family of diabetics and maybe some from the medical profession if they want to see our views and opinions. So, in effect, the same people who look in here and you don't have to be a member of this forum to read all the posts.

zand · Jan 23, 2015

Andy12345 said:
but why can't the Facebook thing be in the form of an advert? why specific posts need to be posted i don't know, its a bit like tabloid advertising if there is such a thing, i don't know maybe that is the most effective but it seems a little too mercenary for a health related forum

Yes exactly that Andy - an advert would be fine. Showing our posts on FB is just tacky and unprofessional for a so called 'support' organisation. My son phoned me this morning, he 'grew up' with Facebook and he was astonished that this happens. He said "But surely no-one posting on a forum would expect their posts to put on Facebook, that's dreadful".

@daniT1D please don't be sorry you started this thread. If I could 'like' your post 100 times I would. It's a support forum. Your post has supported me. Thank you for being so truthful about the situation.

poshtotty · Jan 23, 2015

Andy12345 said:
but why can't the Facebook thing be in the form of an advert? why specific posts need to be posted i don't know, its a bit like tabloid advertising if there is such a thing, i don't know maybe that is the most effective but it seems a little too mercenary for a health related forum

To me, it feels like a violation and betrayal. If posts are to be shared, we should be notified in some form, on the thread itself, that it has been reposted to Facebook, giving us the opportunity to remove any of our own content which we don't want shared on that particular medium.

This has, until now, been a strong community of support, friendship and personal experiences. I predict that what will happen now is that members will be less open, less forthcoming and therefore less helpful . As a result the forums where we all believed we could contribute safely and which set this site apart from all the others, will lose its purpose and yet another useful tool for members and newcomers alike will be lost.

zand · Jan 23, 2015

Yes Diana and that would result in more diabetics needing more drugs...................cynical ? Moi?

tim2000s · Jan 23, 2015

This is a forum that has some 130,000 members. Looking through the posts on this topic, it looks like a very small number of these have issues with the facebook link. That these are some of the more experienced members should probably also be considered.

I've made it clear what my personal opinion is, and I know you guys have a different opinion, however, unless you have signed up to the Facebook page, you never see the Forum threads on Facebook. I have.

The conversations on the facebook page are of the same type as those on the forum, often discussing the same topics. To have two versions of the advice seems crazy to me and actually bringing them together only seems logical in trying to provide better support for Diabetics in general. If you or your family have not liked the Facebook page then they do not see these comments.

If your family is interested in Diabetes, it is far more likely that they would have signed up to Diabetes.co.uk and would be able to see all your posts anyway. They could see these simply by reading the forum from time to time.

I realise that people have concerns about facebook, but the forum content is not being provided willy nilly. A link is posted and you have to click on it and be brought to the forum to read it. The content is not being displayed there. Similarly, the twitter feed has a link to a post on the forum website. I truly believe that this is a far better way to reach out to the diabetic community at large than hiding the forum away, and as has already been said, it has never been a private place.

AndBreathe · Jan 23, 2015

To position myself; I'm not a fan of Facebook. I have a profile, which I laughingly say is only used to ensure my OH isn't having too much fun in Paradise without me. I reckon I post on there once or twice a year. So, it's fair to say, I'm not a fan.

This morning I've gone to the relevant page on Facebook and tried clicking on various links, but haven't found anything brining me back here or revealing forum user names. Have I been lucky/unlucky or do I just not understand how Facebook works?

Conversely, I have consulted with Dr Google, just typing in "diabetes blood sugar ranges" (which would have been something like I'd have typed at diagnosis) and this site (not forum) came up third:

I had to go for something like "Carb Flu" before I returned any forum activity:

For me (and I stress the me part here), I have to decide if the 95% I like about this place should be overshadowed by the 5% I don't like. The 5% unpalatable doesn't actually include the Facebook issue, but you probably realised that anyway.

@dianagrace - I do hope you get a response this time about your user name, because I do know of others' whose names have been changed.

poshtotty · Jan 23, 2015

tim2000s said:
This is a forum that has some 130,000 members. Looking through the posts on this topic, it looks like a very small number of these have issues with the facebook link. That these are some of the more experienced members should probably also be considered.

I've made it clear what my personal opinion is, and I know you guys have a different opinion, however, unless you have signed up to the Facebook page, you never see the Forum threads on Facebook. I have.

The conversations on the facebook page are of the same type as those on the forum, often discussing the same topics. To have two versions of the advice seems crazy to me and actually bringing them together only seems logical in trying to provide better support for Diabetics in general. If you or your family have not liked the Facebook page then they do not see these comments.

If your family is interested in Diabetes, it is far more likely that they would have signed up to Diabetes.co.uk and would be able to see all your posts anyway. They could see these simply by reading the forum from time to time.

I realise that people have concerns about facebook, but the forum content is not being provided willy nilly. A link is posted and you have to click on it and be brought to the forum to read it. The content is not being displayed there. Similarly, the twitter feed has a link to a post on the forum website. I truly believe that this is a far better way to reach out to the diabetic community at large than hiding the forum away, and as has already been said, it has never been a private place.

I'm not sure that is so. You don't need to sign up to the Facebook page to view the posts. We all know one link can lead to another and a trail is never ending. One post on Facebook can lead a curious person to all the posts on the forums if they have the time and inclination.

Some members here use their full names, including surnames. Others use profile photos of themselves with husbands/wives/children. We can be easily identified. Some members in their posts even say when and where they are going on holiday or that they are in hospital - the consequences don't bear thinking about. Even if those particular posts are not reposted to Facebook, the original post will be a road in to the Forum, which is the administrators intention, but have they considered how exposed it leaves us?

I don't think family knowing about us being Diabetic that concerns us. Its the wider public

Deleted member 83869 · Jan 23, 2015

AndBreathe said:
To position myself; I'm not a fan of Facebook. I have a profile, which I laughingly say is only used to ensure my OH isn't having too much fun in Paradise without me. I reckon I post on there once or twice a year. So, it's fair to say, I'm not a fan.

This morning I've gone to the relevant page on Facebook and tried clicking on various links, but haven't found anything brining me back here or revealing forum user names. Have I been lucky/unlucky or do I just not understand how Facebook works?

Conversely, I have consulted with Dr Google, just typing in "diabetes blood sugar ranges" (which would have been something like I'd have typed at diagnosis) and this site (not forum) came up third:
View attachment 11139

I had to go for something like "Carb Flu" before I returned any forum activity:
View attachment 11140

For me (and I stress the me part here), I have to decide if the 95% I like about this place should be overshadowed by the 5% I don't like. The 5% unpalatable doesn't actually include the Facebook issue, but you probably realised that anyway.

@dianagrace - I do hope you get a response this time about your user name, because I do know of others' whose names have been changed.

I like the page too and I can't see no forum posts....

tim2000s · Jan 23, 2015

dianagrace said:
I'm not sure that is so. You don't need to sign up to the Facebook page to view the posts. We all know one link can lead to another and a trail is never ending. One post on Facebook can lead a curious person to all the posts on the forums if they have the time and inclination.

Some members here use their full names, including surnames. Others use profile photos of themselves with husbands/wives/children. We can be easily identified. Some members in their posts even say when and where they are going on holiday or that they are in hospital - the consequences don't bear thinking about. Even if those particular posts are not reposted to Facebook, the original post will be a road in to the Forum, which is the administrators intention, but have they considered how exposed it leaves us?

I don't think family knowing about us being Diabetic that concerns us. Its the wider public

But Diana, whether this is on Facebook or anywhere else on the web, it's no different. One link leads to another and you end up reading about stuff on here (whatever members may post as stuff! ). It was always exposed. It has never been private. Topics are linked to from the front page of the Diabetes.co.uk website, and that website is linked from other diabetes and non-diabetes websites. The trail never ends.

I think what this probably should remind people is that they should keep personal things they don't want to be shared widely and in public off any internet forum unless it is in a protected area. In reality, anything shared on the internet, even with access restrictions, can end up getting out.

Avocado Sevenfold · Jan 23, 2015

@tim2000s To be fair, 130,000 members don't post on most threads here

Privacy does not worry me personally, but it bothers me that DCUK hosts a platform on which diabetics can be ridiculed and insulted. On the forum, there are rules which do not seem to apply on Facebook.

Perhaps we could have a thread on here, where every time we see something hateful on DCUK's Facebook page, we post it here. Wouldn't last long, would it? Is the sharing of information not a two way street?

tim2000s · Jan 23, 2015

@Avocado Sevenfold I know that most members don't participate. If you look at the live online stats on the forum front page, generally there are typically 200-300 members on-line and 600-900 guests.

The question then becomes "Who do you allow to vote in a membership vote deciding on the direction a forum might take?" I'm not in a position to answer that and would have to hand over to @Administrator to answer that question.

phil1966 · Jan 23, 2015

I'm a member of several forums and use the same user name and avatar on all of them, except this one where I use a unique user name and avatar and a broader location precisely because I don't necessarily want my wider "online persona" (and the real me) to be associated with posts I make on here.
Whilst I understand people being upset, speaking personally, it makes no difference to me if it's on FB, on twitter or on here - public domain is public domain and that's why I protect my identity as above

zand · Jan 23, 2015

Avocado Sevenfold said:
@tim2000s To be fair, 130,000 members don't post on most threads here

Privacy does not worry me personally, but it bothers me that DCUK hosts a platform on which diabetics can be ridiculed and insulted. On the forum, there are rules which do not seem to apply on Facebook.

Perhaps we could have a thread on here, where every time we see something hateful on DCUK's Facebook page, we post it here. Wouldn't last long, would it? Is the sharing of information not a two way street?

Yes, exactly that AS. We have quite strict rules here. You can be warned for entering a thread with the intention of belittling someone. Yet on Facebook we can be ridiculed. How can that be right? It seems more 'X-Factor' or 'I'm a celebrity' than support. I don't belong to FB anymore, why should I be subjected to this?

phil1966 · Jan 23, 2015

@zand - Facebook pages are moderated by the page owner so I assume any comments that are inappropriate on things the admin post on there would be deleted.

dannyw · Jan 23, 2015

phil1966 said:
@zand - Facebook pages are moderated by the page owner so I assume any comments that are inappropriate on things DCUK post on there would be deleted.

Big assumption there. Under what rules ? Anyway, this forum is a business to make money, as well as a forum. They will actively seek higher membership as this makes advertisers smile. Someone earlier mentioned 130,000 or so members. Really ? My guess is there are probably a few hundred who are "active". A vote will never work as most members have long gone and will never vote. Your option here is pretty much just be careful what you post or don't post at all. Bit harsh but no point in wasting time on something that will never happen.

Heathenlass · Jan 23, 2015

phil1966 said:
@zand - Facebook pages are moderated by the page owner so I assume any comments that are inappropriate on things the admin post on there would be deleted.

Somehow I can't see that someone calling someone else an " ****** frog faced ***** " on this forum remaining unmoderated .But it remains on Facebook .

@ohitsnicola , the threads are there as a tinyurl link that leads to the thread on here.

Which brings me back to a point I made in a previous post, that the link leads to a thread on here that the OP is possibly unaware of being linked to from Facebook. There are comments made by Facebook posters that the OP may never see, or have the right of response to .If a Facebook member wants to make a point, why not use the original thread here to make that comment and reply ?

I'd be interested to hear the opinions from some of the OP's whose threads have been linked , @AnnieC , @ConradJ ? How do you feel about it ?

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