PLEASE READ: Where did my post/thread go?

[David]

There are three possible reasons you can't find your post:

1. You're looking in the wrong place (try using the "Search" at the top of the page)
2. The post/thread was moved (rare occurence, but sometimes threads or individual posts are moved to a specific forum in the site. For instance, a drug trial thread is created in the "General" forum, it will be moved to the drug trial forum)
3. The post/thread was completely deleted from the website (see below)

Expect threads and posts to disappear, it's unfortunate that good posts and helpful threads must be deleted, but it's for the best.

We're not infallible, mistakes will be made and important/interesting/valuable posts and/or threads will be lost.

However, the reasoning for removing posts and threads is summarized below:

The site here at alsforums.com is becoming busier, and hopefully more helpful. We have great members, and the best and most helpful moderator on the web (Al).

Unfortunately, as the site grows its member base will inevitably attract numerous advertisers and scam artists; individuals RAVING about new products and wonderful new treatments - creating hype to fool people into false hope and eventually, online purchases.

The online world is full of affiliates, earning a percentage (10-50%) of sales.

These individuals spend their daily life posting false information so that individuals such as ourselves will search the internet for more information, eventually landing on a purchase page and submitting our credit card information to order whatever it is they've "tricked" us into believing.

Sometimes these individuals posting are harmless - simply wanting to provide links to their websites for the purpose of gaining new listings in search engines, and/or new visitors to their website, etc...

However, a few of us here at alsforums are doing our best to keep this site free of all that garbage, and we'll be very ashamed of ourselves if this forum turns into a BT - a haven for false information, advertisements, quack salesmen and online marketers.

Those other forums are simply setup to sell products and make profits. They are great revenue streams for the website owners. More often than not your email addresses are given to spammers - at which point you begin to receive massive amounts of email (junk mail) with links to online pharmaceutical companies and places to purchase knock-off and potentially harmful generic drugs.

The forum owners get up to 50% of the profits from these sales, so it's good business for them, and they care very little for your safety. Money is the driving factor for why these sites are setup, not being helpful to people who need it.

They target (or setup) disease related websites because to them, it's good business, it's an exclusive market that requires specific drugs, and due to the nature of the illnesses, claims of false hope can be an easy sale (no disrespect intended).

So yes, expect threads and posts to go missing for a variety of reasons :smile: We're sorry, but this is the only way.

And no, we will not openly debate the validity of posts before removal, it's been tried, and failed miserably - the "bad" posters simply come in droves to defend the posts and/or posters. An open discussion is exactly what they want, because then it becomes their forum, they may not fool everyone, but fooling a small handful of people is good enough - we won't tolerate it here.

We're currently at less than 1% of posts being removed, we expect this number to grow over time, but very marginally. For the most part, the important members of this site (people affected by ALS) will not notice the nuisance of posts being removed (if you do, it will be somewhat infrequent).

We hope you find these forums useful and helpful. Please think twice before believing "everything you read". We're doing our best, but like always, nobody can be everywhere at once

If you have time, periodically check our <a href='/scamwatch/'>scam watch</a> page, and think twice before believing a stranger.

While the vast majority of people here are here for the right reasons, not everyone is.

We'll do our best - but while we're working hard, please keep your head up and use your common sense.

Much love and respect, David.

 

[Al]

Geez David I hope you're not talking about my many posts. lol. AL.

 

[David]

no, no, no, of course not. I removed that last bit. It's difficult to write something so long and not risk offending people

I know you were just having a poke at me though

 

[patricia1]

emergency contact

no, no, no, of course not. I removed that last bit. It's difficult to write something so long and not risk offending people

I know you were just having a poke at me though

I wanted to make a suggestion. You know when you fill a form out in a doctors office ,they ask for a emergency contact and the person name and relation to you. Well we should all have one on the forum. Sometimes people get worse and cant write anymore or pass away .We have no way of reaching some of them. So I think this would be a way to keep intouch if we can no longer type. Of course if you are not confortable leaving a contact name and number thats ok. We could leave it with one of the people on the forum in their private message what do you think Pat.

 

[Al]

Hi Pat. We talked about this a while back but it just kind of died off. Sorry for the pun but none intended. It is a good idea and when we sign new members we do ask for a valid email address and I have used those on 2 occasions to contact people and got no reply. I don't know whether they just changed email addresses or whether they have passed on or can't use the computer anymore. Some people were worried about privacy issues with the family if the member gave an address without discussing it with the other person. I'm not sure if we can alter the sign up format for that but there should be somewhere we could put it.
AL.

 

[CindyM]

This thread was started before I came on board, and I am glad it re-surfaced. I like David's description of why spamers and advertisers thy so hard to get a thread started. As one of the people who remove these guys a couple of times a day, I always wondered what their mission was.

And thank you Pat for bringing up the idea of emergency contacts again. I think it could work and if I remember correctly David was going to look into it when he had a spare moment. (I know he's a busy guy and I always mean but never seem to give him enough credit for all he does to keep this site up and running.)

Anyway I hope you all have a good night's rest. Here on the East Coast bedtime is approaching so I'll bid you good night for now. Regards, Cindy

 

[David]

Ahhhh, much like you, I'm glad this thread re-surfaced because I forgot about Emergency Contact numbers.

I will add this in now, but it's up to everyone to update their profile to include the phone numbers. I won't make it a mandatory field because that could have some privacy implications.

It's on a volunteer basis

 

[David]

Emergency Contact Numbers

The new feature has been added to the User Profile, follow this link to update your Emergency Contact Numbers:

https://www.alsforums.com/forum/profile.php?do=editprofile

Here's the description of this new profile option:

You know when you fill a form out in a doctors office, they ask for a emergency contact and the person name and relation to you? Well, we at the forum often make close friends with others on the forum and would like to keep in touch should anything happen, such as: you lose the ability to type, or your computer explodes, or you leave for vacation, or you can no longer use your computer. In this case, we want to know how to reach you. This is completely voluntary and this information is NOT MADE PUBLIC.
Without this information your new friends may have no way of reaching you.

 

[brooksea]

David,

I'm a little slow .

Do we contact one of the moderators if we feel someone is missing in action to obtain phone number or how will that work?

Thanks.

 

[megs]

Hi , Can someone tell me why my posts are being moderated ?

Penned a 2nd reply about 10 hours ago , when I clicked the send button it said my post would be moderated and uploaded when approved .that was 10 hours ago .
............I was replying to the post about fasiculations before atrophy ............

 

[megs]

That one went through OK :-?

 

[Al]

We are having a severe problem with new posters dumping links for pills , porn, etc here. Any new members that sign up will have their first 10 posts moderated. That just means that someone wil read it before it is posted. As we are volunteers with a debilitating disease please bear(bare) with us. We do try to live normal lives and do this when we can. I woul hope that one of the moderators can get to your post within 12 hours. I don't think that is unreasonable under the circumstances. Heck, your doctor probably doesn't get back to you that quick.
AL.

 

[megs]

So how come some have gone through without moderation but one is awaiting moderation ?

It Stiffles the flow of conversation

 

[Al]

I haven't the foggiest notion. As we said it is new software and unless we spend a lot of money getting a real IT guru to look at our glitches it will be a hit or miss job fixing things. It should only take a few days to fix. The people trying to fix this have day jobs then commute home, try to spend time with family and then take time for the forum. As I said ,Please Bear with us.
AL.

 

[liz]

I think were getting more than our money's worth from this forum. Would this be a bad time to remind people to check out the Donate to ALSForums section up top?

It's been days since I've seen any of that spam. Keep up the good work guys.