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roy
6th May 2013, 08:50
Good Morning all,

Received a message from John,explaining that he thinks he has been banned from the forum, I explained that it must
be a computer glitch because I couldn't see why John would be banned being one if not the most informative,caring and
Productive forum member.I personally have had so much support from this great man.
I would ask Andrew to kindly look into this computer failure.

Best wishes,

Roy.

berdbrain
6th May 2013, 09:39
I'm very sorry if you were banned John, your posts are most helpful, supportive and informative. I was trying to get on at between 12.30 and 1.30 last night and I was unable to get onto the forum, I could access other parts of the MND Website but not the forum, so I gave up and am obviously on now.
I hope your right to post is maintained
all the best
Debbie XXXXX xx (I added the last 2 kisses for good luck...Rory the kiss monitor may not be counting vigilantly today, it is a Bank holiday after all!)

john
6th May 2013, 10:06
Thanks Debbie,
It was that sort of time so maybe it is not aas sinister as I think but I certainly had 2 threads closed.

john

XXXXXXXX right back to you with a virtual hug.

pete
6th May 2013, 10:12
Hi John BB,

Sadly this is my last post on what has become a rather sad Forum, I just wanted to wish you all the best and say I have been fortunate to have met some really great folk on here , You all take care and I wish you what we all want .

Pete

john
6th May 2013, 10:49
Hi Pete,

Sorry to read your post. Have the new wheels extended your horizons?
If you do not like what is happening here the only way to try and make a difference is to keep complaining. Silence will achieve nothing. I view you as a major asset to the forum and a reason for it to continue. There are plenty of people who have been glad of your welcomes and your wisdom. What right do you have to deny future generations on here?.

Have a coffee, relax and get back on here.

john

Laila
6th May 2013, 11:08
Hi Pete,

Don't go please. There is good and bad here as there is in life. We all support each other Pete and you are needed for that.

Carol

Terry
6th May 2013, 11:09
John, you are one of our most valued members, with often witty, educated and useful posts. It is a shame about the posts just being withdrawn and not modified so that we can know what people are saying. You can always send PM's.
And Pete, Please, please don't go.
Love you both, Terry

miranda
6th May 2013, 11:24
Pete -please reconsider. You have offered so much helpful advice and have often been the voice of reason in some of the stickier threads. Your words must have reassured many people - particularly the newbies and the sharing of your experience has benefitted many of us. xx

ccinjersey
6th May 2013, 12:57
You absolutely positively cannot leave us Pete & John. Please reconsider, your words are valued and much needed here.

CCxxx

Barry52
6th May 2013, 16:39
I agree with everyone that Pete should reconsider. I don't post very often but I log onto the forum daily and value Pete's comments immensely as well as those of all the contributors. The regular group, Pete included, are an inspiration to sufferers and carers associated with MND and have certainly helped me keep a positive outlook. Once again pleeeeeease reconsider Pete.

Barry52 xx

Rory
6th May 2013, 16:50
John - I think you are sorted by way of the glitch on your computer or the forum being corrected. You had me worried that we were going to lose our most respected leader and mentor
Pete, your post surprised me after exchanging many beneficial posts from you and your humour, shall we say ,has encouraged me !
I for one would be equally sad to see either of you go - you offer so much to others .

If you are to go Pete, then a big thank you for your help during the 6 months I have been on the forum

But stay , otherwise I will send Roy round !

All the best

Rory

BuzzerB
6th May 2013, 19:07
Hi Pete,

Please reconsider your decision, you are a very valued member of this special community and an amazing inspiration to us all.

Take care

Keith.

Lolly
6th May 2013, 21:26
More censorship again? I missed it. Don't go pete.

Laila
7th May 2013, 09:30
I find this disturbing. Maybe the moderators should consider, if they are removing a post, to keep a note of the removed post in the thread along with some note or edited content so that we can understand what is going on and the reasons for actions taken. I thought that has occurred in the past where a note was provided about a break of forum rules etc. Carol

miranda
7th May 2013, 10:48
Having been reassured that John has not been 'removed', I am wondering if Pete's departure is due to a misunderstanding. Maybe he does not know that John's temporary absence was due to a computer glitch and not censorship. Pete's contributions to the forum will be much missed. Is there anyway we can contact him? Does anyone have an email address or does anyone know if he is on another forum?

Smudge
7th May 2013, 12:32
Firstly, I hope that John and Pete do not leave the forum for the same reasons as everyone else has given.

Secondly, I saw one of the threads that was removed and it was deeply offensive and a personal attack with the vilest of words used against a moderator. I know I'm probably in the minority, but I have absolutely no problem with moderation that removes this type of thing.

john
7th May 2013, 17:34
Hi folks,
Pete appears to have gone and I have decide to do likewise. I find the lack of action on behalf of someone I have come to regard as a friend and the lack of a forum from which he or others can highlight his plight is extremely disappointing. If he cannot get support here then where should he turn. It is 9 months of his life he has had to suffer this indignity. Even if someone cares then their ineptitude is simply incredible. Can you begin to imagine 9 months!!!

I wish you all well.

John

ccinjersey
7th May 2013, 23:14
Such a sad loss for the forum, sad to see you both go...

Thank you for all the kind words, and wonderful support you have given to me. Hate goodbyes, so I intend to email you both (can't get rid of me that easy lol)

Love CC xoxoxo

Laila
8th May 2013, 01:04
Firstly, I hope that John and Pete do not leave the forum for the same reasons as everyone else has given.

Secondly, I saw one of the threads that was removed and it was deeply offensive and a personal attack with the vilest of words used against a moderator. I know I'm probably in the minority, but I have absolutely no problem with moderation that removes this type of thing.

I too can confirm that I saw such a post in the early hours of the morning and can understand the action taken by moderators to remove the post. Goodness knows what has been going on but it is all very very sad to lose two long standing and greatly respected members in this way. I would still ask moderators to consider giving a note or reason of edit or removal of post so that we can have some understanding of what has gone on.

A sad Carol to see this forum start to disintegrate in this way. Come on people!!!! We are here to support each other. You don't do that by running out.

ccinjersey
8th May 2013, 02:58
Just curious if we are talking about the same post, started by John in the early hours of morning? If so, not sure what all the fuss is about? Nothing offensive just a man asking questions and seeking a resolution on another man's behalf. Is something wrong with that?

CC

Smudge
8th May 2013, 09:02
Just curious if we are talking about the same post, started by John in the early hours of morning? If so, not sure what all the fuss is about? Nothing offensive just a man asking questions and seeking a resolution on another man's behalf. Is something wrong with that?

CC

No CCJ, we are talking about a different post. I didn't see John's so could not comment on the content. We all sign up to the rules of the forum at the beginning, if we don't like them then nobody is forcing us to stay here.
Everyone on here, whether a person with MND or a person caring for someone with it goes through tough times and gets angry, upset and frustrated. But personally I don't think that gives us the right to resort to the use of personal abuse and foul language to get our message across.

pete
8th May 2013, 11:48
Morning Everyone,

Just thought i owed you an explanation as to why i had decided to no longer post, For me at least this forum is made special by the people on it, not the MNDA although they provide the means by way of the forum,and as such we all agree to abide by the rules as some have already said ,this is not the place for foul language or personal attacks at anyone and agree that the moderator did the right thing in removing the offensive post/s, what I cannot understand is why a legitimate post from a long time member asking again why on earth nothing had been done to end the long running saga of a fellow members enforced stay in hospital.
The content of Johns post was not offensive nor in any way rude, so to remove it was both unjust and showed little concern if any for Johns Feelings or Grahams.
What was until recently in my view at least, was a Forum that dealt with all aspects of life with MND and equally for carers of those affected by this disease, and in the past moderated by the likes of Robyn, Mike FD, and others who did just that moderated posts that overstepped the rules, or removed because of spammers and the like, But in every instance a reason was given as to why the post had been adjusted or removed, hence the name given moderator, however to delete posts for whatever reason is deletion and not moderation ,as to why this has become a now regular feature again no ones bothered to inform us as to why this is now part of the Forums rules.
Its worth repeating again ,that the only reason this Forum attracts members and guests to view and contribute is totally down to the folk on here every day ,who talk and assist one another in everyday matters concerning problems that arise that very few other than those with intimate contact with MND and all its quirks would have any idea how to answer, yes books and pamphlets may assist ,but first hand knowledge is a valuable resource , and John is most certainly qualified in that area, He has endlessly tried to assist more than one person on here, whatever the reason was that led to his valid request for something to be done on anothers behalf ,because that persons ability is such he has little alternative but to use a public forum to get help, both shocks and saddens me ,for I may be, as some of you might well face the same situation at some point, in our futures.
I just hope and pray that there is someone like John who keeps up trying to get things done .
I feel John at least deserved to see his post remain and others that were not offensive if moderated and the reason why, thats not asking to much.or is it?
So i guess my question for you all is who can we rely on ,when or if you find yourself in such a hopeless position ,who do you turn to ,for many we have relatives who will do their utmost to see we are treated to suitable care package, but on your own not able to speak with no family to oversee and speak for you raises some important questions and they are not going to be answered by using the delete key !!!!.
The Forum should be where we can discuss both the light hearted and like this issue a very serious matter to those who are on the receiving end of such a wicked waste of their lives, I feel very strongly that this matter needs a solution ,if thats not within the MNDA's remit then let them say so ,so at least we know for future users who may well turn to seek help,only to find precious little can be done for them.or perhaps they can see fit to point us in the direction of someone who can assist in such delicate matters.
On a much lighter note just to thank all the guys and gals on here who posted for me ,its been a true pleasure getting to talk with you all, long may it continue with such a special bunch of people,MND isolates so many folk and this has been a wonderful time for me to chat albeit via the computer with so many people i would never have met ,, and knowing that advice and always a laugh isn't that far away means a lot on the down days.

Jangobie
8th May 2013, 12:31
Dear Pete, I read your post with a heavy heart. I am so sorry that you have decided to leave the forum, but understand what you are saying. I for one will miss both yourself and John, I do not post very often but read the forum every day for me you were both the voice of reason, research, humour and kindness. I hope that one day you may both feel that you can return. Very best wishes. Diane

ccinjersey
8th May 2013, 13:57
Miss you already :(

Laila
8th May 2013, 14:32
I'm desperately saddened by all of this . Carol

berdbrain
8th May 2013, 23:04
My heart is heavy too and if MND Andrew felt moved to post an explanation if may help a little.
It is such a heartwarming experience when people like John and Pete post replies to us when we post with our questions, nothing is too much trouble, I wish we hadn't had to 'meet' under such circumstances, but my life is richer for knowing you all.
It's a bit like the sketch where 'Computer says No' or banging your head against a brick wall, or having the shutters go down when it's your turn or someone saying 'no comprendez' or 'no speak English' when you know darn well they do and they just become high handed in their dealings with us ordinary folks ( as Pete might say)...and 'they' always use the old 'data protection' chestnut when it suits them. Put your money where your mouth is MND Association, give the people with MND who use this forum some hope that you will help someone who has no one.....time and time again you have been asked....you've got to do better than issue non commital statements.
yours in exasperation................with absolutely no kisses and maybe an attitude like Alex Ferguson might work better as he said 'there is absolutely no problem with losing your temper if you are justified'
Debbie

BuzzerB
9th May 2013, 12:39
There is something very seriously wrong when the actions of a moderator and inactions of the MNDA result in two very special people feeling they have no option but to leave the forum. I am appalled that there has been no response from the MNDA, they should be very worried when grass roots members leave!
It is all well and good having eye catching front of house displays on the web pages and highly paid staff but if they can't help someone who has been trapped in a hospital with non caring nurses for 9 months, what confidence does that give anyone?
MNDA, stop acting like politicians, grow some balls and go and sort this mess out, you should be ashamed of yourselves.

Keith.

magic
12th May 2013, 21:11
I can only echo the sentiments of the other members. MNDA moderators, you must give us an explanation of the missing posts. Not to do so would call into question your integrity and suggest a very patronising attitude to those with MND and their carers. I sincerely hope this is not the case.
Magic

john
19th May 2013, 01:30
Hi I have only popped in to contribute briefly to the Lady peacock thread.
I am deeply disappointed that the mnda should remove critical posts about themselves by someone only seeking to champion the cause of a pwmnd and the posts of the patient himself. This post will probably disappear for the same reason.
No discussion, no explanation. Certainly could not pinpoint a reason in the stated rules of the forum so why is it happening?
God knows .

John

fishmate12
19th May 2013, 01:44
Hi John

Pm me if you want Ray

roy
19th May 2013, 11:01
Hi John,

Good to see you back, well and truly missed no one can understand the politics bit like the chuckle brothers we just want people
to walk the talk.Anyway you have a great day.

Roy.

roy
19th May 2013, 11:04
Good luck Scott Reading !

Rory
19th May 2013, 14:09
Hi John
Good to see you back on a couple of posts.
The crazy gang need some influence of stability !

Since you last posted a few things have happened -

Debbie has used up 3 months quota of kisses

Laila has used up 5 months quota of gin

Roy is burnt out!

And summer has gone


Keep fit and have fun

Rory

Summer has gone

john
19th May 2013, 16:54
Hi Rory,
Thanks for that I am sat sweating in 40 degrees c in Venezuela. Time is 11.20am.
They like us have 4 seasons - summer, summer, summer and summer.
Back to reality on 28th.

John

Rory
19th May 2013, 17:04
Venezuela !

Some length to go to get an oil change !
Drink to replace the sweat !
Have fun

Rory

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