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366811 tn?1217426272

Your privacy

So many people have expressed to me their concern about their privacy and personal security on forums in general and at Medhelp in particular, I have been inspired to write a long overdue journal entry about the subject. Some readers will say, "OMG!" And some will say, "Who cares?" depending on your experience and expectations. And not a few have expressed their anger and disillusionment with what they regard as an undisclosed and improper deployment of the material they post and such informration about themselves as they share.

I'm not attempting to support any particular view, but I AM making an effort to explain how and why things work as they do, here and really almost everywhere on the 'net. Here is where you will find the Journal Entry:

http://www.medhelp.org/user_journals/index/366811

or just go to my profile, click the journal entry tab, and read, "Medhelp Privacy -NOT."

As you will see, while Medhelp privacy is the subject for obvious reasons, the information has virtually universal application, exactly as I have reported in the journal, and in no way is intended to villify or unfairly characterize Medhelp. I will be happy to receive your comments, additions and corrections.

-JSGeare

45 Responses
Avatar universal
I urge everyone to read this.  It is a real eye opener and important information especially for people who have panic/anxiety issues.  Do you want all your personal information out there?  This also, shows you how important it is to use a "forum name" rather than your real name.  Even with this said, some people have a definite style of writing and because of that, can be recognized easily.  I don't know what the alternatives should be for those of us with panic issues because this certainly doesn't make me feel safe or anxiety free.  This is a forum where one should be able to let their hair down and say exactly how they feel in a safe environment where they won't be judged.  With the whole world out there watch, how can we do that?
366811 tn?1217426272
It is hard to express one's self honestly and completely when you don't know who is looking. That said, if you are aware that anyone COULD be looking, you learn, sooner or later, to keep the very personal material close to your chest, disclosing ONLY to those you trust and only in conditions which assure your privacy -such as private emails, phone calls, etc. In fact, this is what some of the anxiety folks do: they've made the connections they trust -and pursue the relationships elsewhere.

Medhelp, in fact, does not allow personally identifying info on any forum. Put your phone number (or MY phone number) in a post, and the system will either replace it with other characters or else a mod may delete the material. The rule doesn't apply in other places on MH and that is part of the problem: the fact that it does NOT apply does not mean the information is protected, necessarily, even though it may seem to be that way.

So -be careful here as you would be in any place where you don't know everybody.
346570 tn?1267503627
I hate that you posted all of this. Like I needed one more thing to panic about.

I love you dearly, but I hate this post.
Avatar universal
I think this is a good post. I often felt very uncomfortable when I saw photos of some in their profile . Why have a nickname when you want the whole world to see you, unless
of course you don't care or it isn't a real photo. Why advertise to everyone that this person in this photo (some have family members as well) is suffering from all these problems. I think the forum should forbid photos to ensure more privacy . This is just my thoughts .

Thanks JS for looking out for us.

Sumi
Avatar universal
We live in a nasty world and no matter what forum or transaction you do on the Internet, if someone wants the information badly enough and they have the expertise to access it, they will.  It is a reality, an unfortunate one, but a reality non the less.  We also have to remember that MedHelp is a business.  If we were on a private forum instead of an open forum, we could at least be more protected from this type of thing happening.  I Googled Barfer Anxiety and found all sorts of stuff I had written in postings.  I have since removed all that I can from my profile page, but every time you write a post or answer a post, you take the chance that it will end up on Google. With this being an anxiety forum, that does create a lot of stress for those of us who would prefer to keep it private among other suffers of this disorder.  I don't think this is such a big issue for most of the other MedHelp forums, but because ours is a mental health issue, that in itself, shows that there is still a stigma attached to it even in our own community.  
366811 tn?1217426272
I assure you the intent is not to make anyone panic or freak out. I'm simply describing what's "under the hood" as it were. Medhelp is by no means up to any foul play, here, or, if they are, its the same foul play as anyone else with an enormous investment in a website deploys to keep the operation afloat. And even though some of the information may have been news to any of you, you must also understand that it has been this way for a long time: here at MH and in many other commercial operations. And we also have to ask if the value we receive is a fair exchange for the value we give. It must be, because people are still coming and participating.

Google is pretty fast, pretty effective. If you search for "medhelp privacy" guess what's at the top?

Another interesting question is, "If you knew about all this when you joined, would you have done anything differently?" Would you NOT join? Join, but hold personal info a little closer? Keep pictures of your kids off the site? I would have done nothing differently, myself. So what if some stranger knows what I look like, knows I draw odd-ball bean pictures, play with trains and write a lot of stuff. What are they going to do? Come steal some beans? Sell me life insurance? Make me talk about the Bible? Hardly different then what was going on before the 'net was even around.

Remember, what's good for the goose is good for the gander. The very same googling that lets people see my underware ALSO reveals Medhelp's agenda. When they advertised for a software wizard, they described themselves as a social networking site -I don't remember anything about seeing "finding cures together," the slogan projected to the users. Does this mean they speak with a forked tongue? Probably not -the audience in this case wasn't us -it was a job applicant. And that same googling also reveals that Medhelp is anxious (fancy that) about the challenges of handling huge volumes of data and thousands of interactions quickly and efficiently. They never told us THAT, either, but I'm glad they're working on it.

And this brings us back to the users. How many of you have actually read, word-for-word, the Terms of Use? (Here, or on Yahoo or anywhere). Few, I would imagine. How many have read them since they saw my journal entry or read this post? My point is that, in the end, WE are the ones with the primary responsibility for our own safety and sense of security. While I will grant that social web sites should do MORE to explain the risks and exposures, I can't in good conscience then argue that WE are thereby relieved of looking out for ourselves.

It is just my personal opinion, but I believe that MH and all similar operations should do more to disclose how they operate and what the potential risks are. It should be done right up front and with frequent reminders. Far as I'm concerned, I'd like to see a forum called, "How Medhelp Works" in which the Medhelp folks explain what they do to make this puppy a commercial success, how they pursue bad actors, how they decide what topics to add, what the Terms of Use really mean, etc. I see no problem with transparency and openess. Do you?

Barfer mentions a "private" forum. This is easy enough to do -just set up a free Yahoo group and make it "private." While a search engine may show that the group exists (and probably will NOT show that) it won't get anyone in the front door. And there are also free blog and forum sites where the users -not the management- set the rules. But what the heck -there are nearly 500 panic related groups on Yahoo right now, some with over 1000 members. Check 'em out. But those are populated by people who are strangers to us; maybe what we need is a MH anxiety "club room," where we already know who is who. It's a thought.

To summarize: you are no worse off NOW then you were BEFORE, knowing what you now know. So, if you were OK before, you are probably OK now. And what you should take from this is a glimpse at the way the web site social network business operates; we look at MH because we know MH -but it is similar everywhere and in all honesty I don't see any particular red flags on MH. The bottom line: be aware.

346570 tn?1267503627
I can see your underwear on google?
195469 tn?1388326488
It's not a pretty picture....LOL

Heather
366811 tn?1217426272
It STARTS.
195469 tn?1388326488
With YOU my love...it never ends....LOL

Come on Caligirl...you MUST get in on this one...Hee Hee

Hugs,
Heather
480448 tn?1426952138
Bikinis or Briefs?

:0)

I DO actually have a worthy non-undies related comment to make in a minute....but first I must finish my Reese Pieces.  ;0)  BRB
Avatar universal
For goodness sakes JS, keep your pants on.  I can see the full moon all the way up here in Canada!
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