Old 01-25-2016, 01:17 PM #1 (permalink)
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Default Here goes...

Here goes… my opinion, before it may get removed. With the new format, Moderators have an emblem on their profile indicates that they are Moderators. Now we have four, maybe five (I’m sure David can be considered as one)… whatever. Ok, again, my opinion, I do not believe a Moderators job is to reply to every new Thread or post. Yes, the Moderators are supposedly well informed and some may be extremely knowledgeable concerning MNDs. However, I feel when one of them replies nearly instantly to a new Thread/Post other members may feel, “Well, that’s the last/final word on that topic.” So, they don’t contribute their opinion or comments to that topic.

Yes, the Forum needs Moderators to watch for profanity, pretenders, those finding a soft spot around the DIHALS sub-Forum and those who refuse to believe they do not have ALS… then the ‘final word” is applicable and banning is the last step. But, my opinion, a moderators job should also be to ask questions when a new Thread is too vague or kind of fishy.

It’s probably good (maybe) that this Forum is heavily moderated (as noted often in another Forum) but it’s a Forum! If questions, and/or anyone who may somewhat disagree with a new Thread or post is chastised by a Moderator, or a PM gets quickly send to them from a Moderator... the Forum becomes nothing more than a feel good chat room.

My opinion, from my measly 893 posts.
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Old 01-25-2016, 01:56 PM #2 (permalink)
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Default Re: Here goes...

I think I understand where you are coming from, Al, but I'd HATE to have our moderators stop chiming in. They are so knowledgeable and generous, and frankly I appreciate knowing that I can ignore the DIHALS sub forum because I know they will handle it. If our moderators are going to go quiet on us, we need to fire the current group so that they can stay active!
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Old 01-25-2016, 02:56 PM #3 (permalink)
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Default Re: Here goes...

It is easy to forget (or some simply may not know) that Mike and Laurie were both equally as active before they were asked to contribute additional time with the background chores of the "Forum Admin". For illustration... Could anyone imagine asking Tillie to stop holding our hands if she were asked to help with Administrative duties, too? The very thought sends shivers down my entire body.

I'm glad, though, that you knew you could voice your thoughts. But I'm also sorry that the perception is that your thoughts and comments would be quickly wiped away by those with the ability to do so. My vision of the Moderator is as someone equal to the many of us here who has also agreed to do the dishes, take out the trash and change the light bulbs if and when necessary. And because they'll do those chores, we have a safe place to visit.

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Old 01-25-2016, 03:27 PM #4 (permalink)
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Default Re: Here goes...

Jim, there is a difference between Moderator and Administrator. Yes, the Mods this Forum has are valuable contributors but... my opinion, a new Thread should have time and space for responses before they reply (almost conclude to some) a topic. I have noticed a drop in older and current members responding to new Threads that have been quickly replied to by Moderators. I understand that being a Moderator can be a precarious position but it is a requested and accepted task.
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Old 01-25-2016, 03:42 PM #5 (permalink)
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Default Re: Here goes...

Nuts, I no longer reply to the DIHALS sub-Forum and I pretty much ignore it now too. Yes, I do occasionally view it but... now only four maybe five members reply to any new Threads started and most of them are Moderators. Maybe it's good thing ( I don't see as many med students testing the Forum ) or maybe it lessens the number of over all viewers. As I have written before, this web site actually has a cash value to David because he sells advertising and that is based on the number of "hits" (members) the site receives. Myself, I think it was better when the Moderators were somewhat anonymous.
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Old 01-25-2016, 03:54 PM #6 (permalink)
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Default Re: Here goes...

All I will note is that our 'older and current' members are having a freaking hard time dealing with progression just now. There is a lot of support going on behind the scenes as well as the public messages.

I believe in giving folk a warm welcome when they join. If they are pretending something it either becomes obvious to all fairly fast, or they lose interest and disappear. I don't like seeing new members attacked as soon as they join. Many of these people are not used to this kind of communication and are often normally private people, or are in a very stressed state. So they may not come across as meeting everything, but again I believe it comes out in the wash if a warm welcome is given and they are allowed to just reveal themselves. I don't believe most members have any idea how much time the mods put into checking out and removing true trolls - it is huge.

I agree to that I haven't seen any real difference in behaviour here between either Mike, Laurie or Greg since they became mods (rather than admins).

I always appreciate that you have your own POV Al, and are willing to say what you think. Thanks for bringing this up!


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Old 01-25-2016, 03:56 PM #7 (permalink)
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Default Re: Here goes...

David may receive money from this site but I doubt he will ever be able to give up his day job

DIHALS
Again most of our current PALS and CALS are either very new or getting their heads around diagnosis, so responding to DIHALS is not appropriate. The 'older' members are up to their eyeballs in progression.
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Old 01-25-2016, 04:22 PM #8 (permalink)
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Default Re: Here goes...

Tillie, as you wrote, "Again most of our current PALS and CALS are either very new or getting their heads around diagnosis, so responding to DIHALS is not appropriate."
That may apply to the few new ones (being that it's a rare diagnosis) but there are many-many older members who are seldom heard from anymore. I respect your opinion, Jim's, Nuts and anyone else who may chime in here. I hope the ones who are reluctant to chime in because this Thread concerns Moderators will step up too... with their opinions.

Again, from my measly 893 posts. Ooops... forgot to put a smiley at the end
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Old 01-25-2016, 04:43 PM #9 (permalink)
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Default Re: Here goes...

Again, for most of our older members there is a very sad reason they are quiet...
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Old 01-25-2016, 05:35 PM #10 (permalink)
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Default Re: Here goes...

Yes Tillie... to some degree that is true. But, occasionally (on the designate page "ALS/MND Support Group Forums") scroll down to the bottom of the page and note who is currently online with the Forum. At this moment there are five lines of members and a lot of familiar names. Names not often heard from anymore.

Whatever...
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Old 01-25-2016, 05:42 PM #11 (permalink)
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Default Re: Here goes...

Hi Al, I'm glad you brought this up. (I posted a few minutes ago, but I don't see it.)

I often worry about hogging the space, just as you say. I log on often, many times each day and night and the wee hours, to clear the moderation queue, ban trolls and spammers, intercept people who are just plain ugly, and ensure that new users and people in crisis don't languish alone without anyone acknowledging their existence.

DIHALs often piss off people, so I leap on them quickly.

Any thoughts you have are welcome. Truly.
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Old 01-25-2016, 06:48 PM #12 (permalink)
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Default Re: Here goes...

Yes Al, I see who is logged in and many old names, and many that I talk to a little bit privately who are struggling just to log in and read a bit but unable to reply more than a line here and there. Sadly it is the nature of the beast ALS.
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Old 01-25-2016, 06:50 PM #13 (permalink)
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Default Re: Here goes...

I think Al mentioned that there is a "know it all" dynamic on this forum.
That being said, it is like that on every forum.

I personally don't reply much anymore because of the authorities, but it does piss me off when someone discounts my reply as if it doesn't count, or has no merit.

I feel like we all are experts on how ALS affects us physically and mentally. This disease has so many variables and progression that nobody is right all the time.

It especially bugs me when the DIHALS are told "what you are describing does not sound like any kind of ALS symptom to me". That just brings them back for more questions. I think it would be better to simply tell them,"nobody can diagnose MND but a qualified neurologist after extensive testing".

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Old 01-25-2016, 06:50 PM #14 (permalink)
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Default Re: Here goes...

Thanks for bringing this up, Al.
I appreciate the attentive and proactive moderation. I have been a member of other forums (non MND associated, but still...) and those with a lighter moderator touch quickly descend into flame wars, off topic posting, thread hijacking and just plain bullying. There is a definite trend on most forums a small few to do the lion's share of the posting and tidying. However, what needs to be fostered in any healthy forum is a welcoming environment for any member to post opinions (politely) and share information without shutting other people down or causing people to feel like they need to defend any post they make. I feel this forum does a pretty good job.

MND is a such wildly different disease for each person who suffers, though there are a few who are very knowledgeable about it, not one member here is an absolute expert in ALL aspects of it- so the forum is a good place to share personal experience and gain more information than any one doctor can give you, or what any one research paper on PubMed can disseminate. I would hate to see that sharing of knowledge suppressed because people are afraid of censorship. I don't see it here, though.

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Old 01-25-2016, 07:00 PM #15 (permalink)
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Default Re: Here goes...

It does seem like we get more mod posts but I think it is because the label is huge by their name so we notice just who is posting.

Several members dont post anymore, I am thinking of Dalvin and Max, because it is so hard. They may be able to look but that is it. There has been a lot of pals passing in the last several months and their cals simply cant bear to be here. As Tillie said, several of us are struggling with progression and trying to sustain where we are at emotionally and physically. I think this leads to our mods appearing to post more simply because the rest of us arent able.
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