I understand totally the following post and its replies, if your face don't fit, and you accidentally upset the wrong people, they get rid of you, in a bullying way, I've seen it happen to others. I stood my ground in a dignified way, but they wouldn't just agree to disagree and move on, and the Moderators allowed it to happen. A lot of good nice people have been pushed off by a group with a Hyena mentality
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
Hi everyone
I haven't been on the forum for a while as I have felt unsettled when
reading some of the uncompassionate replies to people who are desperate
and at their wits end and looking for help.
Most of us are very caring and kind individuals who like to help
those in need of our advice and guidance. I for one over the past 8
years have received a massive amount of reassurance and helpful advice
and made a huge amount of friends.
Please think twice before replying to someone who is in dire need of
help if your reply is going to be negative as this may make matters
worse for the individual concerned.
Sorry to moan but I felt I needed to say something.
Shazzie
Ditto. Popped over to young people and hopefully helped a bit.
Xx
Totally agree Shazzie, my granny always told me - if you can't say anything nice then don't say anything!!
But as you say thankfully most people here are sympathetic and dispense good advice!
Shazzie, l have often - over the years - felt the same as
you. But sadly thats life. The majority of folk are the most kind and
considerate people ever. Always there will be an element who - and l
don't think they realise - answer with quite blunt and hurtful replies.
There has been many a time that l have messaged someone to apologise
for some of the replies they have received.
With MS - l know most of us struggle with mobility problems and pain.
Also many of us have depression - even though we do not always realise
it. So when l see a sharp hurtful reply - l always think 'Oh Dear - they
need help'.
So don't feel intimidated by anyone - the majority love all your posts and you would be missed.
Fx
Thanks F. I really appreciate your lovely words. Means a lot.
I have not been on for a while but I am back now and I promise I
won't be going anywhere and I will try not to be intimidated. Afterall, I
have a lot of lovely friends on here, including you!
Shazzie xx
One of the many reasons why I don't post!!
That's why I've posted this. Something needs to be done otherwise genuine people like you miss out.
Shazzie x
Well said Shazzie. I always thought of this as a nice helpful
and reassuring site but agree that sometimes replies can be out of term
and offensive not just to those they are posting to but others who are
reading it. I feel certain that if I had come on here as a newly
diagnosed MSer and read such replies I would not have come on again. So
I'm in total agreement with you Shazzie xxx
Awww. I am so pleased you are in support Lisalou. I am glad
as I was speaking for all of the lovely people on here not just me!!
Shazzie xx
It's a great site but I really don't think people realise how
posting horrible responses can affect someone especially it they are
already in a bad place- Jemima on the young persons forum is a example
of this. She is already in a bad place mentally and physically ... The
wrong kind of post could do irreparable damage and its detrimental she
gets the help she needs. So your post is very much supported hun. Xxx
Hi Shazzie, there have been a few lengthy `arguments` going
on and it saddens me when I read them. I prefer not to get involved when
it becomes confrontational. Life for us is difficult enough, with out
aggro, eh?
I have, 3 times in the past 4 ish years, that I`ve been a member
here, been sent messages I dont feel I have deserved. It is easier to
play nice or ignore `bullying` words. If I feel I have said the wrong
thing, then I always apologise. If some people continue to be unkind, I
block them from my PM box.
Like in the world as a whole, the majority of members here are kind,
supportive and friendly. I have made some really good friendships and
value the site greatly........more so as everyone knows I dont have MS
(anymore!), yet I am encouraged to stick around........which I do!
I think if posts get awkward, it is best we dont reply, unless we
feel so strongly that our opinions must be voiced, and in not replying
we shorten the life of an unpleasant post. They can go on for pages and
pages, until the mods step in and close them.
It is a worrying point, that new members may feel there is too much hostitily around, which would frighten them off.
Enough said!
luv Pollxx
I agree Poll. It takes a lot to get me riled. I always laugh my way through life and almost never have a bad day.
It is encouraging to see that all the replies to the post have been
100% in support. Fingers crossed the new members will see all the
positive feedback and they will then see how nice we all are and how we
all look out for eachother.
Thanks for your reply Poll and I hope you are having a good couple of
days after your hectic last few weeks. You did have us all in
stictches though!!
Take care
Shazzie xx
Good topic Shazzie.
I was on the receiving end a while back. Was diagnosed January this
year then had the worry/stress of what dmd's to go on so posted on here.
What with being neddle phobic and the list of potential side effects I
was so upset,confused and just lost.
One reply basically told me to stop whinging and to think myself
lucy! I was. being put on dmds so what was the problem! I was
devastated and was in tears.
I was so pleased to get a private pm from "treek" aka Theresa who was lovely and understood.
I wanted to hide, it was bad ebough digesting the diagnosis. I had very dark days and these comments really affected me.
I am so glad I have moved on and love this forum. Poll you are fab!
And the rest of you guys I know are here for us newbies with great
advice.
Thankyou again for raising this.
Dawn xx
Hiya Shazzie
I agree that people should think a little bit before replying to a
post. As with everything in life, people have different opinions,
that's fine but when someone is obviously not coping very well,
answering in a negative way is really not going to help anyone.
I personally would much rather not reply, than add to someones
distress. There are times when I read a post on here and think that a
person needs a good ole slap to snap them out it and in life I can't
stand people who like to wallow in their own self pitty. However I
wouldn't dream of replying to some one in that way on here. I have no
idea of who that person actually is and what their life experiences are,
so who am I to judge them and their feelings in such a public way
especially as I don't know how a person may feel or react to what they
may see as a negative response.
I've seen posts quite recently when I didn't post because I couldn't
think of a positive way to respond so I didn't post, I ended up
reporting it to admin as the original poster was obviously distressed at
the negative responses. If everyone decided not to post a negative
response, the original poster wouldn't have ended up so distressed by
it.
There's often some great debates on here and I really wouldn't want
to change that. Just a little thought to how your response could be
taken is all it needs really.
Sue
xxx
Awww Dawn. Thank you so much for your reply.
I didn't know whether I should or not but thought it was time to say
something on behalf of all us lovelies on here and there are loads, like
you say. Poll and Theresa have helped me lots too as well as loads and
loads of more friends on here. Too many to list.
We all worry about you newbies as we want to help and be there for you all.
Thank you so much for your kind words. They mean a lot. Hope you
are doing ok on the dmds and I am so sorry you got some negative replies
too.
Look forward to chatting with you.
Shazzie xx
Life is good now Shazzie thankyou. Started rebif in May. Not 1
side effect!! Just red site marjs and I am doing the jabs with the help
of my rebismart all by myself lol.
My critical illness paid out so I can now breathe a sigh of relief
knowing as a family we are okay ( not that anything is going to happen
-I WILL BE OKAY). I have sensory issues but that's fine with me. I am
alive, it's not the brain tumour as thought. I am not going to die.
(Previous thoughts). I work full tine as a teaching assistant and am
back to work on Tuesday.
Once again thankyou for caring. There is only do much family and friends can know and understand.
Dawn xxx
Hi Dawn - thanks for those kind words (and from shazzie). Ive
not been on here for a while as ive not been too well and ive had
computer problems (as you can see from my post today!)
Im so glad you are feeling more positive and things are going well with the dmd. Teresa.x
I totally agree Sue.
Thanks Teresa. Hope you are feeling a bit better today even if your computer still feels poorly!!
Shazzie
My sister has just been to Wales on hols. She brought me a heart shaped piece of Welsh slate back and it reads;
Remember;
it`s nice to be nice.
Innit da troof!
pollxx
What a really nice post. That is what I like about this board
is you all care about one another. I haven't been on here long being
diagnosed at end of Jan. You have all been so supportive and really
helped me come to terms with the diagnosis when I started to panic. This
is a rreally scary disease to have to come to terms with and you guys
really help.
Poll I do sometimes feel guilty when I am chuckling to myself when
reading your posts, as I feel I shouldn't be laughing when youhave been
hhaving such ordeal I'm sorry. I really do think you should write a book
as you are so good with words.
Barney
Hi Barney
Thanks for your support and I am so pleased you liked the post. I know I speak for all of us. We all need eachother!!
I agree about Poll writing a book but I do wonder what she would call it!!! Hehehehe!!
Shazzie xx
a modern history of boudicca?
I think Boudicca strikes back would be a good one with a
picture of the flame haired lady with multiple hair colours on a super
duper motorbike! What do you reckon poll?
How about The All New Adventures of Boudicca
and instead of the chariot we could have the mobility scooter our lovely lady has just given away
I hope you keeping up with all of this Poll hehe xxx
Yeah that's a good one Kelly :)
I reckon they are good but I would go for "Carry on Boudica" then she could show off her amazing sense of humour.
What do you think Poll???
Shazzie xxx
JellyBellyKelly wrote:
Totally agree Shazzie, my granny always told me - if you can't say anything nice then don't say anything!!
But as you say thankfully most people here are sympathetic and dispense good advice!
Kelly, l have often used this quote - it originated from the film
Bambi- and it was the little rabbit Thumper who said ' lf you can't say
summat nice - say nothin at all''
lt should be at the top of our forum pages - part of the 'rules'.
l am still in touch by email with several folk who turned to this
site for advice and compassion - but were horrified when their 'post'
turned into a 'heated debate'. As someone who has had spms for 31yrs
now - l do have a lot of personal experience - but only in the
symptoms/treatment that l have had. As l have never been on dmd's - l
never get into any 'debate' connected to them. But for bladder/bowel
incontinence - yes - unfortunately l do. So l do try to help all the
'anonymous' posts from folk who are so embarrassed-demoralised by whats
happening to them. And sadly, they feel it is only them that are having
this trouble.
l try to reassure them that - no - it is - l think - the worst side
of this disease. lt not only makes them feel so degraded it also
disrupts their everyday existance and can cause a breakdown in
relationships. When trying to help someone - l got rather a curt reply
from a member of this forum demanding where l got my 'facts 'from. So
obviously, this person is one of the lucky ones whose bladder/bowels are
still behaving themselves!! And they never read all the heartbreaking
pleas from folk whose lives are disrupted with this problem. l have
learnt such a lot on this site and shall always be indebted to folk who
have passed on their 'wisdom'. lt was on this site - that l was
introduced to LDN. And as someone with SPMS - it was at last something
that l could take that hopefully would improve 'my lot'. And it has made
a big difference. Knowledgable people like Whammel - l owe a lot of
thanks to. lt made me start questioning and querying - not relying on
GP/Neuro's who do not know enough about MS. And Poll - of course is an
inspiration to us all - although she makes us see the funny side of life
- we do know that she is battling all the time to keep her 'RED' head
above water. And we love her to bits!!!
Fx
My thoughts exactly F. What lovely words in your reply F. Full of wisdom.
Thanks for your help and advice especially over the last few weeks.
Shazzie xx
it originated from the film Bambi- and it was the little
rabbit Thumper who said ' lf you can't say summat nice - say nothin at
all''
That's twice now my username has been used on the forum this week!! A girl could start to get a complex lol
With regards to the title of the post though I must admit I'm always
sceptical of replying to posts for fear of been shot down by what I
said, (not that I've ever said anything out of turn) and whilst I could
deffinatley use some advice on my current situation when posting in the
past I've only got a few replies so generally dont bother anymore.
Just grateful for the two buddies I've made on here
Sue xx
The problem on this site is the lack of proper moderation.
Bullying and unkind posts or confrontation is overlooked by the 'turn a blind eye' moderators.
There are many other forums where moderation is good. This one is diabolical.
Please don't blame the moderators. Some of them are
volunteers and without them this site may not even exist. (some have ms
like us!)
I personally feel that they allow 'free speech' and i feel that they
are in a 'no win' situation because i have seen them step in, in the
middle of a heated debate and they have been criticised for that also.
I believe the moderators do a good job and only tend to step in when the terms and conditions are breeched.
If you are concerned about any replies or posts that have not been
challenged on here - then report the post so action can be taken.
Teresa.x
Anonymous wrote:
The problem on this site is the lack of proper moderation.
Bullying and unkind posts or confrontation is overlooked by the 'turn a blind eye' moderators.
There are many other forums where moderation is good. This one is diabolical.
What a remarkably odd statement.
I think that the volunteer moderators on this site do a terrific job.
Alison
I have to say that the moderators moved very fast on this once it was brought to their attention!
Very good job mods.
Thank you.
Shazzie xx
Anonymous wrote:
The
problem on this site is the lack of proper moderation. Bullying and
unkind posts or confrontation is overlooked by the 'turn a blind eye'
moderators. There are many other forums where moderation is good. This
one is diabolical.
Dear Anon
The same Moderators work across the forums. It is unfortunate that
you cannot see the work we do in the background to prevent bullying,
personal attacks and hi-jacking of threads, but there are many lovely
people on the forums who do know exactly what I mean.
Moderators do not 'turn a blind eye'. It may help to remember that
the most 'hands on Moderators' are volunteers carrying this task out
from home - sometimes we have to leave our computers to work, eat,
sleep, live. Whilst we try very hard we cannot be expected to catch
every post.
That is where forum users come in. If you see a post or a thread that
makes you feel uncomfortable or angry we ask you to report it. Doing
this immediately sends us an email with the link to that post, at that
point we will immediately review the post. If necessary we will have
inter-moderator contact to decide whether or not action is necessary.
We do our best. Without us the forums could end up being so chaotic
that every post would have to be pre-moderated at MSNC. This would mean
that anything posted on a Bank holiday Friday could not possibly be
posted before the following Tuesday - taking away the almost instant
replies/assistance that people currently rely on.
Actually - perhaps we do turn a blind eye - your post is anonymous
and contains no personal information, as such it is in breach of our
T&Cs and could be summarily deleted...but it hasn't.
Liz [Moderator]
Oh Sue
That is really sad.
You can always PM me if you need to chat. I am always there for anyone who needs a shoulder or a bit of light relief.
Take care.
Shazzie xx
Anonymous wrote:
The
problem on this site is the lack of proper moderation. Bullying and
unkind posts or confrontation is overlooked by the 'turn a blind eye'
moderators. There are many other forums where moderation is good. This
one is diabolical.
I think the mods do an excellent job. Rarely
have I seen a message which I would class as offensive. This site
shouldn't be so sanitised that people can't disagree with each other.
Anon...... Have you considered the fact that the moderators
may be able to see who has posted anon anyway? so they can step in if
an anon post breechas the terms and conditions! Just a thought!
If this is the case......they will be keeping a close eye on you now!
barney_owl wrote:
What
a really nice post. That is what I like about this board is you all
care about one another. I haven't been on here long being diagnosed at
end of Jan. You have all been so supportive and really helped me come to
terms with the diagnosis when I started to panic. This is a rreally
scary disease to have to come to terms with and you guys really help.
Poll I do sometimes feel guilty when I am chuckling to myself when
reading your posts, as I feel I shouldn't be laughing when youhave been
hhaving such ordeal I'm sorry. I really do think you should write a book
as you are so good with words. Barney
Hi Barney, please dont ever feel guilty about laffing at my posts. I
write them in such a way as to cause a titter or two. I usually end up
laffing at a bad situation........it`s my way of handling summat
bad............most of the time that is.
pollxx
Hi, how can anyone reply in such a confrontational, damning way yet NOT give their name. Cowardice at it`s best.
Anyway, I reckon we`ve all said enough about the topic. I know Shazzie is tired of it, but likes to respond to everyone.
Let it go now, eh?
pollxx
Well I'd like to say that i think the moderators do a good
job, I recently reported a couple of posts from someone who was being
particularly unkind to someone on here and the comments they made I felt
were offensive to her and to everybody who has ms..... The moderators
dealt with it swiftly...no complaints from me.
Ditto. I have rarely complained but when I have been maddened enough to do so, the mods dealt with it very swiftly indeed.
efb wrote:
Anonymous wrote:
The
problem on this site is the lack of proper moderation. Bullying and
unkind posts or confrontation is overlooked by the 'turn a blind eye'
moderators. There are many other forums where moderation is good. This
one is diabolical.
Dear Anon
The same Moderators work across the forums. It is unfortunate that
you cannot see the work we do in the background to prevent bullying,
personal attacks and hi-jacking of threads, but there are many lovely
people on the forums who do know exactly what I mean.
Moderators do not 'turn a blind eye'. It may help to remember that
the most 'hands on Moderators' are volunteers carrying this task out
from home - sometimes we have to leave our computers to work, eat,
sleep, live. Whilst we try very hard we cannot be expected to catch
every post.
That is where forum users come in. If you see a post or a thread that
makes you feel uncomfortable or angry we ask you to report it. Doing
this immediately sends us an email with the link to that post, at that
point we will immediately review the post. If necessary we will have
inter-moderator contact to decide whether or not action is necessary.
We do our best. Without us the forums could end up being so chaotic
that every post would have to be pre-moderated at MSNC. This would mean
that anything posted on a Bank holiday Friday could not possibly be
posted before the following Tuesday - taking away the almost instant
replies/assistance that people currently rely on.
Actually - perhaps we do turn a blind eye - your post is anonymous
and contains no personal information, as such it is in breach of our
T&Cs and could be summarily deleted...but it hasn't.
Liz [Moderator]
Being a volunteer is no excuse. Don't volunteer for a job if you can't do it.
Boudica wrote:
Hi, how can anyone reply in such a confrontational, damning way yet NOT give their name. Cowardice at it`s best.
Anyway, I reckon we`ve all said enough about the topic. I know Shazzie is tired of it, but likes to respond to everyone.
Let it go now, eh?
pollxx
If you haven't got anything nice to say...
If you can't accept somebody else's opinion....
Just be quiet, that's what this thread is about.
Please don't blame the moderators. Some of them are
volunteers and without them this site may not even exist. (some have ms
like us!)
I personally feel that they allow 'free speech' and i feel that they
are in a 'no win' situation because i have seen them step in, in the
middle of a heated debate and they have been criticised for that also.
I believe the moderators do a good job and only tend to step in when the terms and conditions are breeched.
If you are concerned about any replies or posts that have not been
challenged on here - then report the post so action can be taken.
Teresa.x
Anonymous wrote:
The problem on this site is the lack of proper moderation.
Bullying and unkind posts or confrontation is overlooked by the 'turn a blind eye' moderators.
There are many other forums where moderation is good. This one is diabolical.
What a remarkably odd statement.
I think that the volunteer moderators on this site do a terrific job.
Alison
I have to say that the moderators moved very fast on this once it was brought to their attention!
Very good job mods.
Thank you.
Shazzie xx
Anonymous wrote:
The
problem on this site is the lack of proper moderation. Bullying and
unkind posts or confrontation is overlooked by the 'turn a blind eye'
moderators. There are many other forums where moderation is good. This
one is diabolical.
Dear Anon
The same Moderators work across the forums. It is unfortunate that
you cannot see the work we do in the background to prevent bullying,
personal attacks and hi-jacking of threads, but there are many lovely
people on the forums who do know exactly what I mean.
Moderators do not 'turn a blind eye'. It may help to remember that
the most 'hands on Moderators' are volunteers carrying this task out
from home - sometimes we have to leave our computers to work, eat,
sleep, live. Whilst we try very hard we cannot be expected to catch
every post.
That is where forum users come in. If you see a post or a thread that
makes you feel uncomfortable or angry we ask you to report it. Doing
this immediately sends us an email with the link to that post, at that
point we will immediately review the post. If necessary we will have
inter-moderator contact to decide whether or not action is necessary.
We do our best. Without us the forums could end up being so chaotic
that every post would have to be pre-moderated at MSNC. This would mean
that anything posted on a Bank holiday Friday could not possibly be
posted before the following Tuesday - taking away the almost instant
replies/assistance that people currently rely on.
Actually - perhaps we do turn a blind eye - your post is anonymous
and contains no personal information, as such it is in breach of our
T&Cs and could be summarily deleted...but it hasn't.
Liz [Moderator]
Oh Sue
That is really sad.
You can always PM me if you need to chat. I am always there for anyone who needs a shoulder or a bit of light relief.
Take care.
Shazzie xx
Anonymous wrote:
The
problem on this site is the lack of proper moderation. Bullying and
unkind posts or confrontation is overlooked by the 'turn a blind eye'
moderators. There are many other forums where moderation is good. This
one is diabolical.
I think the mods do an excellent job. Rarely
have I seen a message which I would class as offensive. This site
shouldn't be so sanitised that people can't disagree with each other.
Anon...... Have you considered the fact that the moderators
may be able to see who has posted anon anyway? so they can step in if
an anon post breechas the terms and conditions! Just a thought!
If this is the case......they will be keeping a close eye on you now!
barney_owl wrote:
What
a really nice post. That is what I like about this board is you all
care about one another. I haven't been on here long being diagnosed at
end of Jan. You have all been so supportive and really helped me come to
terms with the diagnosis when I started to panic. This is a rreally
scary disease to have to come to terms with and you guys really help.
Poll I do sometimes feel guilty when I am chuckling to myself when
reading your posts, as I feel I shouldn't be laughing when youhave been
hhaving such ordeal I'm sorry. I really do think you should write a book
as you are so good with words. Barney
Hi Barney, please dont ever feel guilty about laffing at my posts. I
write them in such a way as to cause a titter or two. I usually end up
laffing at a bad situation........it`s my way of handling summat
bad............most of the time that is.
pollxx
Hi, how can anyone reply in such a confrontational, damning way yet NOT give their name. Cowardice at it`s best.
Anyway, I reckon we`ve all said enough about the topic. I know Shazzie is tired of it, but likes to respond to everyone.
Let it go now, eh?
pollxx
Well I'd like to say that i think the moderators do a good
job, I recently reported a couple of posts from someone who was being
particularly unkind to someone on here and the comments they made I felt
were offensive to her and to everybody who has ms..... The moderators
dealt with it swiftly...no complaints from me.
Ditto. I have rarely complained but when I have been maddened enough to do so, the mods dealt with it very swiftly indeed.
efb wrote:
Anonymous wrote:
The
problem on this site is the lack of proper moderation. Bullying and
unkind posts or confrontation is overlooked by the 'turn a blind eye'
moderators. There are many other forums where moderation is good. This
one is diabolical.
Dear Anon
The same Moderators work across the forums. It is unfortunate that
you cannot see the work we do in the background to prevent bullying,
personal attacks and hi-jacking of threads, but there are many lovely
people on the forums who do know exactly what I mean.
Moderators do not 'turn a blind eye'. It may help to remember that
the most 'hands on Moderators' are volunteers carrying this task out
from home - sometimes we have to leave our computers to work, eat,
sleep, live. Whilst we try very hard we cannot be expected to catch
every post.
That is where forum users come in. If you see a post or a thread that
makes you feel uncomfortable or angry we ask you to report it. Doing
this immediately sends us an email with the link to that post, at that
point we will immediately review the post. If necessary we will have
inter-moderator contact to decide whether or not action is necessary.
We do our best. Without us the forums could end up being so chaotic
that every post would have to be pre-moderated at MSNC. This would mean
that anything posted on a Bank holiday Friday could not possibly be
posted before the following Tuesday - taking away the almost instant
replies/assistance that people currently rely on.
Actually - perhaps we do turn a blind eye - your post is anonymous
and contains no personal information, as such it is in breach of our
T&Cs and could be summarily deleted...but it hasn't.
Liz [Moderator]
Being a volunteer is no excuse. Don't volunteer for a job if you can't do it.
Boudica wrote:
Hi, how can anyone reply in such a confrontational, damning way yet NOT give their name. Cowardice at it`s best.
Anyway, I reckon we`ve all said enough about the topic. I know Shazzie is tired of it, but likes to respond to everyone.
Let it go now, eh?
pollxx
If you haven't got anything nice to say...
If you can't accept somebody else's opinion....
Just be quiet, that's what this thread is about.