A Social Network for Men with Fibromyalgia, Chronic Fatigue or Pain

An important decision about Fibro Guys

In its current state, this website is set up to protect users' privacy at all costs. But this privacy comes at a price. Because you need to be a registered member (which requires approval from an administrator) to view any forum post or blog post on the website, it creates two large problems:

1) Curious outsiders and potential members cannot see much of anything without joining. And for some people, especially sufferers of fibromyalgia or other chronic pain disorders, this small barrier might cause just enough frustration for them to turn away.

2) An even larger problem is that the "privacy wall" completely blocks search engines like Google and Yahoo from indexing the site, so people that search for fibro-related things on the Internet will most likely not see Fibro Guys in their search results.

Without traffic from the search engines, our ability to attract new members is crippled. But by taking down the privacy wall, all of the forum posts and blog posts become accessible by everyone. It is the proverbial double-edged sword.

I am just writing this post to put out "feelers" on the issue. I will not take down the privacy wall down without a super-majority's consent. Please provide feedback on this important issue below.

Thanks,

Rick

Site Creator

Tags: privacy

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Replies to This Discussion

Permalink Reply by Hans Miniar Jónsson on June 23, 2011 at 2:21pm

Personally, I'm the sort of person to be open about most everything.
As such, the privacy wall is "not important" to me.

I think that we would benefit from taking it down, but at the same time, I think we aught to keep the "need to approve" new account still up because that keeps away the trolls and spammers quite effectively.

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Permalink Reply by Rick on June 23, 2011 at 2:46pm

Thanks, Hans. I am in 100% agreement about the member approval system. It has literally kept all the trolls/spammers out.

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Permalink Reply by Michael R Melanson on June 23, 2011 at 4:12pm

I agree that privacy wall is "not important" so if it to help with someone with fibro that great

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Permalink Reply by Mike G. on June 25, 2011 at 7:52pm

Personally the more the site is seen the better it is. More members more information. I totally agree that the "need to approve" should be left in place. There maybe people from other sites that have no idea that this site is even here. Good for you to think of this idea.

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Permalink Reply by Rick on June 28, 2011 at 10:18pm

Thanks for everyone's feedback (although I wish I heard from more people). If I don't hear any protests in the few weeks or so, I will implement the change. Before I do so, I will send an email blast out to every member informing them of the change.

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Permalink Reply by Lee Owen Webb on July 4, 2011 at 7:23am

Hey Rick,

firstly BIG thanks for starting/moderating this group - it's a real life-saver, THANK YOU!

secondly sorry I haven't responded to your discussions etc - still working out how this blog works and what I can receive in my inbox to prompt me to visit the site and participate... if it's not right under my nose sometimes, then I'm one of those FM suffers who tends to forget about thing!!

lastly - YES take down the privacy settings on this group and lets get more men with FM interested in participating here!

Hugs

Lee xo

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Permalink Reply by David Amerson on December 24, 2011 at 9:12pm

Rick,

I am currently using an anonymous name. The simple reason is that I had a bad experience where my boss found out about the state of my illness and raised the issue at work and in front of other people. His concern was communicability of the disease. Obviously there is none as as far as we know. Still the stigma off being sick can be a real issue for those still working. I am on disability now but hope to someday return to work. I'd hate for anyone to connect me to posts here.

I'd also point out that there is a strong opinion, even amongst doctors, that men don't get this disease or if they do, they are not man enough to put up with it.

If this were an AIDS forum I am sure there would be no consideration of it being open to the public.