New Visual Snow Website

DK666
Regular Visitor
Joined: 14 Mar 2014, 02:15

29 Jan 2015, 08:06 #1

Ben Wigmans has just launched a new website on Visual Snow:
www.visualsnow.eu
Here is a description of the site from Benūüė䂨á

www.visualsnow.eu is finished. There might be some small technical difficulties left that will get fixed in the next two weeks. 

On the site is the following: 

1. Interviews with Prof. Ferrari, Prof Goadsby and Dr.Abraham.
2. A palinopsia/after images simulation video 
3. My SPECT-scan video 
4. Videos from the news about Visual Snow Syndrome. Including the Dutch interview with English subtitles.  
5. A description of what Visual Snow Syndrome is.  
6. A detailed list of the symptoms of Visual Snow Syndrome. With a description and images as well as a audio track for tinnitus.  
7. A list of specialists of Visual Snow Syndrome. Which sadly is still an oxymoron. 
8. "Publications": a list of scientific publications on Visual Snow Syndrome/HPPD. On the same page you have "Media" with newspaper articles on Visual Snow Syndrome. Under "Media" you have "Miscellaneous" with some relevant attachments. 
9. The Eye on Vision with a link to Jen Ambrose site. 
10. Visual Snow Simulators 
11. "News" short description of research plans in the near future for Visual Snow Syndrome.   
12. Contact for media and researcher. I can't handle any more general questions at this moment.  
13. Twitter for updates and so on.  
14. A "like"button on every page. 

The site is designed to be a database to help people out with this condition. 
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2fries
Regular Visitor
Joined: 20 May 2009, 05:50

29 Jan 2015, 14:44 #2

Let me guess, it has everything other than a link to this site...
Heaven forbid.
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DK666
Regular Visitor
Joined: 14 Mar 2014, 02:15

29 Jan 2015, 16:37 #3

2fries wrote:Let me guess, it has everything other than a link to this site...
Heaven forbid.
2fries
There are multiple VIsual Snow facebook groups, and as far as I know also another Visual Snow forum, other than this forum.
None of these groups or forums are linked to on the site. 
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2fries
Regular Visitor
Joined: 20 May 2009, 05:50

29 Jan 2015, 23:06 #4

Yes I suppose that appears fair.

There is a difference between this site and 'every' other vs site though.
Not one of those knock-off sites has every single bit of information on visual-snow and related weirdness, gathered by independent researchers without an agenda, all in one location.

Nor do any of the other sites contain a record of just what lengths 'some' folks with vs are willing to go to in order to ensure that this perception is deemed a disease before the facts are in.
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DK666
Regular Visitor
Joined: 14 Mar 2014, 02:15

30 Jan 2015, 00:30 #5

2fries wrote:Yes I suppose that appears fair.

There is a difference between this site and 'every' other vs site though.
Not one of those knock-off sites has every single bit of information on visual-snow and related weirdness, gathered by independent researchers without an agenda, all in one location.
Nor do any of the other sites contain a record of just what lengths 'some' folks with vs are willing to go to in order to ensure that this perception is deemed a disease before the facts are in.
I'm glad you think so highly of your forum 2fries.

Since I'm admin in the two largest Visual Snow Facebook groups, and you see other sites as knock-off's, I certainly know when I'm not welcome.

I'll stop posting any more new updates on the Visual Snow research study, and any other news on Visual Snow, like the site in this post, in this forum.

I wish you all the best.

/DK
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2fries
Regular Visitor
Joined: 20 May 2009, 05:50

30 Jan 2015, 00:51 #6

It's not 'my' forum.  
This forum, and the information it contains, belongs to anyone perceiving visual snow and the researchers studying it.
That includes the supposed 'thousands' of members of the various facebook groups.

Your welcome here has never been in question.

No one needs to 'ask' to join 'this' group.
If you choose to passive aggressively storm off in a huff that is your prerogative.  To deny other members information in order to spite me is quite juvenile. 

It is not 'your' opinions which are not welcomed by the vs community, but mine... as you have just so eloquently shown.
Last edited by 2fries on 30 Jan 2015, 01:07, edited 1 time in total.
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PleaseFindACure
Regular Visitor
Joined: 24 Feb 2013, 18:50

31 Jan 2015, 06:29 #7

2fries, have you ever considered that your antagonism and paranoia may be driving a lot of people away from here?
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2fries
Regular Visitor
Joined: 20 May 2009, 05:50

31 Jan 2015, 17:25 #8

Why no...
What a novel concept, let's consider that together right now shall we.

-Did my antagonism or paranoia slander the previous admins if this sight by posting old mug shots?
-Did my antagonism and paranoia create multiple accounts to harass anyone not suffering from this condition?
-Did my emotions hack the accounts of others with vs?
-Did they caused me to post you-tube videos slamming this sight and the people on it.
-Oh, I know, maybe it my paranoia that caused external links to this site to vanish from other sites on net?
-Do my emotions cause me to keep replacing the words 'condition, perception, and experience' with the words 'disease, suffer, and symptom' on the wiki page?
-Or maybe they are responsible for the deluge of spam?
-Perhaps I'm paranoid that my funding might dry up? Is that what makes me so darn antagonistic?

Check your facts before calling me out.
People were purposely driven away from here in an effort to see this site shut down so as not to interfere with their media campaign of suffering.
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2fries
Regular Visitor
Joined: 20 May 2009, 05:50

02 Feb 2015, 02:40 #9

Nice...

I list the types of attacks that have been perpetrated against this site which have driven away users, who's perception of this condition doesn't fit the suffering stereotype you are propagating, as proof that my paranoia/antagonism is not the cause... and is it acknowledged?
Discussed?
Reasoned out at anything approaching an adult level?

No...

instantly some yellow-bellied fuck-tard just changes the wiki-link so that this site drops to the bottom of the link pile in order to divert yet more traffic away.

bad form old chap

How does it feel to be a coward?

Are those anonymous shadows you're hiding in all comfy and such?
Would you like a pacifier to go with your diaper change?
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2fries
Regular Visitor
Joined: 20 May 2009, 05:50

04 Feb 2015, 04:12 #10

bump
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