What Has Happened to This Place?

[HeartbrokenInNM]

I have just returned after a long time away due to the nastiness and unwarranted attacks I have seen and suffered on this forum. It was with only slight surprise that I see several new posts concerning the childish and pathetic behavior of some. Obviously, things have descended even further since I left.

When I first visited a year ago, I was truly inspired by the helpful, compassionate posts of just about everyone. It seemed like a genuine community of caring people far too mature to ever get wrapped up in their own psychosis. Then a couple of months ago it began. And sure enough, it was the same twisted people over and over again with clearly nothing better to do with their lives who only wanted to insult, berate and browbeat others.

It's clear that all the pleading by the good people here is falling on deaf ears (or eyes). There remain certain reprobates that will never get the message. Let's hope a moderator finally makes an appearance and wipes this forum clean of the pathetic scum that have lain waste to this once inspiring place. We all know who they are.

 

[sadiemae]

It is the same everywhere, My F B groups are full of it too.

 

[HeartbrokenInNM]

Sadie, I would expect such juvenile behavior on Facebook but I never expected it here. From what I've read, it is all attributable to several very disturbed individuals. While they may have been helpful at some point, the posts that I have read from Brooksea, JohnnyLiverpool and ScotsLassie (there may be a few others) of late are nothing but vile and disgusting. And Johnny's illiterate posts usually don't even make sense. I have no qualms about naming them. Watch them come out of their dark holes now and prove everything I've said. Sadly, they are incapable of anything else. Until we as a community shun and ignore them they will not alter their behavior. I will start the ball rolling by vowing not to respond to the infantile attacks from them that will surely follow.

 

[LizT]

I agree HeartBroken. It also seems that the ones who say that its been an overreaction or a misunderstanding, are the ones that are the biggest problem. Many people feel the way you do. Its not just those who spoke up. I am just trying to stay out of those parts of the Forum and focus on what is important.

 

[LornaM]

I have just recently joined this forum. I had read some threads before joining but shorty after I made my first post I read a lot more. I was appalled at some of them. One in particular, in May last year I think, was so bad that the forum members, some who have been active here for a long time, actually asked if it could be removed because they realised their comments were cruel and uncalled for. This and others put me off this forum and I posted that I thought I was not ready for this. This nastiness goes back a long way here, some worse than others and one person who has now passed was particularly cruel to scared (as I am) newcomers. Not always, but often. Very off-putting. I do come on and read up for tips and advice but don't log on or get involved and I think a lot of people will do the same. I read a very nice post recently which I had to comment on. Seasons? So there are nice people here. I think there is a sort of clique going on here among some people who have been here a long time and I dont think they like incomers. That's the impression I get. This could be a good forum. Thank you HeartbrokeninNM for speaking out.

 

[johnnyliverpool1]

interestingly, those who are whinging and hyping up imagined slights are the real nut jobs....the interesting bit being they dont have als........the majority that is......mayde more to do with having there place in the pecking order diminished....put away such childish things.....johnny

 

[LornaM]

so are you saying that those who do not actually have MND do not have a place here? My friend has been diagnosed with MND. I am only looking for information. This is exactly what I mean, I feel unwelcome here.

 

[vzandt]

Its been a lot better since David came by. People are really trying hard ...and that should be noted. I like it here. I think...for the most part..everyone tries to help. I'm happy with my forum friends and I thank them for all their good advise.

 

[skipper66]

I personally have apologized to all her I have offended. One person in particular was very gracious too I might admit in accepting my apology. But, I also feel I shouldn't have to beat myself up for my actions. All of us members on here are under a tremendous ammount of stress due to ALS or the other related terrible diseases. We are only human. We can't beat ourselves up for what we did yesterday but we can make ourself accountable for what we do today. Saying that some of us are pathetic scum doesn't seem to be like a very grown-up statement to make either in my opinion.

 

[LornaM]

No disrespect to anyone here but maybe it's because this is an American/Canadian forum. A different way of dealing with things. The UK forum deals only in MND. They don't have Tea Rooms or Pubs or get into hugely personal details like here, trying to be best friends with strangers they have never met. Maybe this forum should adopt the same policies and keep things on a far stricter level. Also, from what I have read, you have only one Moderator who is obviously struggling to keep control of all of the far too various topics. Some of these topics have nothing to do with MND. Meet and Greet, Come for Tea, Pub, Hotel, Rant and Rave etc have no place on a serious forum and are a breeding ground for discourse. Use Private Messaging for social niceties. Cut your solitary moderators work down and concentrate on the matter most important to yourselves and newcomers. The Do I Have/Is this thread is just an open invite to everyone with a twitch and serves little purpose as no-one here can diagnose anyone asking the question. Change that to Newly Diagnosed and you will half the moderators work instantly. This forum is far too personal. Uncomfortably personal.

 

[sadiemae]

Agree with you Lorna

 

[Alyoop]

Lorna, some of the off topic threads have been a life saver for many people. It's not just about asking specific question for help, it's about fellowship as well. The reason for some of the off shoots, like tea and the pub, are for friends to get together and share their experiences on a different level, away from just having ALS or being involved in ALS in some way.
Come for tea was created because in the middle of threads, people would get off the subject of the original poster. In a nice way......talking about there pets, loss of their pets, sick children etc. it didn't seem fair to the original poster, so Abbas child ( who has passed away) and I started an off topic thread to avoid this, and because a place was needed to escape from ALS, if just for a few moments a day.

This thread in itself is unfortunate, as the issues that were causing strife here, we're dealt with. Everybody took a deep breath and things a purring along nicely. It's a pity that this thread has dragged up the nastiness and become nasty in itself!

You have attacked things that you clearly have a limited understanding about. Go and read some pages of the "off subject " threads and you will see the joy that they bring to so many.

And as a last word, the " person who was so mean and passed away". Was the most knowledgable and careing guy here. He helped so many people behind the scenes, that you would be amazed. Most of them the people that he used tough love on. He cared so his heart broke. He could not bare the pain that people put themselves through when they clearly did not have ALS, while he battled for every breath. He tried to use his knowledge of the illness to turn their minds to other possibilities. Just thought you should know........

 

[skipper66]

I think Lorna has a great idea about changing the one thread title to the Newly Diagnosed. However, I think to be supportive of other people we need to have a peak into their lives in order to help them. Some of the forum members have actually met each other in person. It's up too each individual to reveal how little or much about themselves that they want to reveal. I don't think anything is wrong with the Come for Tea or other groups. If a person doesn't want to belong too them they don't have too. I agree though that some discussions should probally just be through private messages as well. I feel that there also nothing wrong with posting a thread for example asking people what would be good gift ideas for a PALS, good movies, or even the joke thread is wrong. We need to have some laughter or some type of joy on here or this disease is not going to just destroy bodies but our spirit as well. We need to reach a happy medium with it all.
Kim

 

[LornaM]

Alyoop, I have attacked nothing and I accept that I am still learning about this forum, so you are correct when you point out to anyone reading this that I have a "limited understanding" . I know no one here, past or present so please do not condemn me for that. I am seeing things through a newcomers eyes and I obviously made the mistake of thinking that my opinion and thoughts may have been helpful. I have taken on board the points you have made. I am sorry if my post has dragged up anything nasty. To use your own words "Just thought you should know", I found your response a bit abrasive and an example of why I, and possibly others, are reluctant to become involved in this forum.

 

[johnnyliverpool1]

see lorna, how you misinterprited my words......thats what causes silly mis understanding........but am not goin to try to explain myself....or maybe i will....there are trolls on here, religious manics....morons, more than one.......all mixed in with beuatiful people.and the most important people who seldom are the centre for discord.......there are three people that i am aware of who had not used these boards for months, but dived in, guns blazing to even up old percieved slights against themselves , when they saw a chance.......and its all so disappointing.........johnny///