Benefits and risks of use of Yuku (formerly Ezboard) forum Visual snow or static

Featured Community: Visual snow or static (larger image see here)

*) "Hey - there could be benefits to internet addiction. It'll keep you off the streets!" (SopuliSusie [subject #405], Yuku forum Visual snow or static - General discussion - Beneficial and harmful uses of internet forums, October 28, 2007)

"I participate on here because I feel a kinship with everyone else. I like knowing that other people are dealing with the same thing. It's why doctors tell anyone with a chronic illness to seek support groups. I don't discuss this stuff with the other people in my life because they wouldn't get it. The other reason why I like it here is because the perception problems are an intellectual puzzle for me. It remotely related to my professional life, and I find it interesting. Reading the literature on this stuff is one of my Sunday hobbies. It's the sort of thing I do for fun."

(SopuliSusie [subject #405], Yuku forum Visual snow or static - General discussion - wave of scepticism, October 9, 2007)

"I know one thing. Without this forum, we would have pretty much never discovered each other. We would have gone to various docs and just been laughed at. Just about all knowledge on visual snow can be found buried in this forum.

Anything can be addicting. World of Warcraft can be addicting. Watching T.V. can be addicting. Talking on the phone can be addicting. Smoking can be addicting. Checking on the visual snow forum can be addicting. Crap, even work can be addicting. The key is control. You always have the choice. Just some choices are harder than others.

All in all, I would say the benefits of this forum FAR OUTWEIGH the drawbacks. I mean without this forum, where would we all be? How would I have discovered someone else like me?"

(starrant [subject #138], Yuku forum Visual snow or static - General discussion - Beneficial and harmful uses of internet forums, October 9, 2007)

"My thing is how the hell else would we have connected? Simply put, if the internet didn't exist, I would probably just think I am the only person in the whole world with visual snow, as I would have to go to 100 docs before 1 tells me I have persistent aura. IN THE YEAR 2007 ALMOST 2008 THAT'S HOW IT IS. A vast majority of doctors out there still think we are nuts. A majority still think we are basically weak minded fools who should be put on Prozac because we are apparently freaking out about 'normal' visual symptoms everyone apparently sees. Everytime I read about this on this forum, I want to shoot someone.

Pardon my Fench, but people bitch about stupid shit. 'OMG!!! It took me an extra 15 minutes to get to work!!' 'These gas prices make me want to commit suicide!!'

Blah, blah, blah, blah.

Weak minded and requiring Prozac my ass.

Anyone who has negative feelings toward the Sofia Greene survey can think of where we would be today without this survey being conducted - NOWHERE!!!!!!!!!!!!!!

Praise God for Sofia Greeneand the actions she took (she is female right??). Her actions shall echo in eternity. Praise God for K for his continued tireless quest to help us attain answers into our life's big challenge and mystery. Praise God for everyone contributing on this forum. I would say that at least 90% of all the information on visual snow and static is contained on this forum and on www.migraine-aura.org. Every post is valuable!!!

Anyone harping against the Sofia Greene Survey can go ahead and leave the forum and continue the trek through visual Hell alone."

(starrant [subject #138], Yuku forum Visual snow or static – Discussion – Impact of Sofia Greene research project on internet community, November 19, 2007)

"I say don't trust anything that's said on forums, take it in but only as an opinion to add to your own.

Also don't let yourself be bullied by people who think they know better, we are individual people with different lives, some people seem to forget that.

I do check the forum regularly, but I also check my emails, and lots of other stuff... I don't let it rule my laptop, it's just one of those things I do."

(alexxx [subject #435], Yuku forum Visual snow or static - General discussion - Beneficial and harmful uses of internet forums, October 9, 2007)

"I found this group after my diagnosis (before that, I didn't even know the term visual snow). I lurked on and off for about 10 months before I finally logged in and filled out the survey. I've gotten quite a bit of beneficial aspects. The support is nice. Knowing I'm not alone is incredible. Reading the literature on persistent aura and seeing only 20 published cases! Geez louise! From here, I know now the numbers are certainly greater. I've learned a couple of tricks from other people, like that distraction technique. That's been a good one - not for walking around, but for reading, it's been great. I've learned the names for some of my symptoms. When I get new ones and I have questions about them, I know where to ask. Half the time, I can poke around, and someone's already asked before. I liked that because instead of freaking out or wondering or obsessing, I can note it and move on with my life. I like that. Having gone through a pretty tough time getting used to this stuff, I hope I can give some kind of useful advice to someone who is just newly dealing with it. From a selfish point of view, I find this a really interesting puzzle. It's a puzzle I think about a lot since I'm constantly reminded of it! So, I find this forum really interesting in an intellectual sense. Then, finally, I think its cool that you, KP, are collecting data on all of this. I think it's a very cool way to collect data on something so rare.

The drawbacks? I suppose addiction. During the work week, I check this forum as a 'reward' for finishing some icky task. I used to check another forum, but now I check this one. Sometimes I read tmz.com. Sometimes I read cnn.com. It's my 'do something fun for me' thing before moving on to the next task. I spent more time on last week, but I was on forced rest from work. I don't know that anyone is on here enough to worry about addiction.

The biggest drawback lately has been people being antagonized, but I guess that happens on any internet forum. In my sicker CFS days, I participated in some online CFS support groups and I don't remember ever seeing anyone post messages about how CFS was really all in our heads. Those people would have been immediately flamed as trolls and then banned. And of course, as you probably know, CFS had a long history and nasty history in the medical literature as being called a somatization disorder. Now it's not. But, I've never seen those kinds of posts in other health forums. I am in poor health at the moment from my dysautonomia going wacko, so I am much more vulnerable to stress, I will admit, but I am annoyed, absolutely annoyed, with the constant justifying of myself to others. Now if the primary function of the forum were to be support, I'd say ban their ass. But, it's not. So, let's have a dialog as long as there remains some sincerity. But in the meantime, that is a drawback of the forum for me, at least today."

(SopuliSusie [subject #405], Yuku forum Visual snow or static - General discussion - Beneficial and harmful uses of internet forums, October 9, 2007)

"Well, as my career occasionally has me managing internet forums, I can cite you a list a mile long of the negatives. This place is definitely not the norm for internet message boards. There are obviously differences between places like this, which is geared toward one thing only, and open communities where anything can be discussed. Here, we rarely have problems with members fighting with other members, name calling, harassment, etc. I can count on one hand the amount of times I've seen stuff like that happen here. Go to another forum with a different topic, and it could be total mayhem (which is why companies outsource the management of said boards to companies like the ones I've worked for).

But if we're speaking just about the benefits/negatives of this forum, I'd have to say the benefits include the 'OMG moment' - the moment you realize you are not alone and you've actually discovered what it is you've been dealing with for the past weeks, or months, or even years. You've found other people that understand you, you don't feel so alone, and a huge weight is lifted off your shoulders. To me, that is the most important function of this site. Other benefits include making friends... I do consider a number of people who post here regularly to be my friends. I enjoy talking to them, whether it's about the topic of this forum or something completely unrelated.

The negatives for this forum would have to include the 'copycat' effect. You might see someone here who has all the same symptoms as you, they post a new symptom, and all of a sudden you're looking for that symptom every day, or worrying that it might happen to you. Or even worse, thinking you have it but actually don't.

It's been said before and I know it's rather obvious, but this forum has by far a higher average of extremely intelligent people posting than any other community I've seen, so the negatives for this place are, I think, not a very big deal (the few that do exist)."

(IanKC [subject #94], Yuku forum Visual snow or static - General discussion - Beneficial and harmful uses of internet forums, October 9, 2007)

"The psychology of certain message boards and other online communities is really interesting sometimes. A lot of places people get so used to just talking to 'their' inner circle of friends that when someone new comes along and says something they even mildly disagree with, you are labeled a troll. Other communities like this one are generally pretty trusting and welcoming, but I think the point of this forum is different than most of the 'chit chat' boards out there. We're all working together because we all share the same problem, and thus understand each other, even if the person posting is brand new. We can sympathize and genuinely want to help. If you're stepping in on a political or other recreational conversation elsewhere, you won't necessarily be greeted as warmly."

(IanKC [subject #94], Yuku forum Visual snow or static - General discussion - Troll!, December 10, 2007)

"I check the board almost daily but as said before it is just another site I log into when I come on the internet. I am not addicted to it I could easily not look but when I did I'd get fed up looking through the posts I'd missed. Plus I enjoy reading through. And the copycat thing, it understand that.. janey posted about the focus adjustment thing. I had never noticed that before and after reading about it I saw it!! Obviously a normal thing but for a while I was like whoah!

If I got a new symtom or had seen a doc or got some results this is the only place I feel able to be totally honest about it. Everyone else doesn't understand..."

(Pocanut, Yuku forum Visual snow or static - General discussion - Beneficial and harmful uses of internet forums, October 11, 2007)

"If I mention the internet to my doctor, he gets a smug little look on his face, as if to say - you really should not be participating in dodgy internet forums. No wonder youre as nutty as a fruitcake...-

The support and finding others with same symptoms is a great comfort..."

(Janey [subject #282], Yuku forum Visual snow or static - General discussion - Beneficial and harmful uses of internet forums, October 15, 2007)

"One side effect. I was recently reading the positives and negatives of the VS forum (here). In this regard I must say, I personally see only positives, well mostly. I must admit, now that I am aquainted with this site I have been more aware of my VS. It is not a distraction in a major way as it never has been but I am taking note of it on almost an hourly basis now. I assume this will taper off with time and I will go back to my usual, short attention span I have with my VS. The best example I can give is 'You really dont pay attention to your nose until you have a cold even though your nose is always there'. It seems I have caught a cold. Is this a normal side effect for new users of the site?"

(tokooltone [subject #556], Email too Klaus Podoll, April 7, 2008)

Internet addicts (for more information on internet addiction see here and here)

Internet troll (image from Wikipedia)

References

Barak A. Emotional support and suicide prevention through the internet: A field project report. Computers in Human Behaviour 2007; 23: 971-984. [PDF]
Eysenbach G, Till JE. Ethical issues in qualitative research on internet communities. BMJ 2001; 323: 1103-1105. [PDF]
Feldman MD. Munchausen by Internet: detecting factitious illness and crisis on the Internet. South Med J 2000; 93: 669-672.
Feldman MD. Munchausen by internet: Faking illness online. Selfhelp Magazine April 30, 2001.
Feldman MD, Bibby M, Crites SD. 'Virtual' factitious disorders and Munchausen by proxy. West J Med 1998; 168: 537-539. [PDF]
Feldman MD, Peychers ME. Legal issues surrounding the exposure of "Munchausen by Internet". Psychosomatics 2007; 48: 451-452.
Liu T, Potenza MN. Problematic Internet use: clinical implications. CNS Spectr 2007; 12: 453-466.
Nakao M, Barsky AJ. Clinical application of somatosensory amplification in psychosomatic medicine. Biopsychosoc Med 2007; 1: 17 [Epub ahead of print] [PDF]
Podoll K, Mörth D, Sass H, Rudolf H. Selbsthilfe im Internet. Chancen und. Risiken der Kommunikation in elektronischen Netzwerken. [Self-help on the internet. Chances and risks of communication in electronic networks] [Article in German] Nervenarzt 2002; 73: 85-89.

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