0 Admin: PSA To All Camp Other Google Account Users And Readers

A message from Camp Other to readers:

Keep your eyes on Google and how they treat your accounts - especially if you have and use a pseudonym online connected with Google+ accounts.

BEFORE:

http://googlepublicpolicy.blogspot.com/2011/02/freedom-to-be-who-you-want-to-be.html

"When it comes to Google services, we support three types of use: unidentified, pseudonymous and identified. And each mode has its own particular user benefits.

Unidentified. Sometimes you want to use the web without having your online activity tied to your identity, or even a pseudonym—for example, when you’re researching a medical condition or searching for that perfect gift for a special someone. When you’re not logged into your Google Account (or if you never signed up for one), that’s how you’ll be using our services. While we need to keep information like IP addresses and cookies to provide the service, we don’t link that information to an individual account when you are logged out.

Pseudonymous. Using a pseudonym has been one of the great benefits of the Internet, because it has enabled people to express themselves freely—they may be in physical danger, looking for help, or have a condition they don’t want people to know about. People in these circumstances may need a consistent identity, but one that is not linked to their offline self. You can use pseudonyms to upload videos in YouTube or post to Blogger.

Identified. There are many times you want to share information with people and have them know who you really are. Some products such as Google Checkout rely on this type of identity assurance and require that you identify yourself to use the service. There may be other times when it’s more desirable to be identified than not, for example if you want to be part of a community action project you may ask, “How do I know these other people I see online really are community members?”

Well, this all sounded like a reasonable division to me, and that's worked fine for me for ages.

AFTER:

But during the past month, Google apparently began shutting people's Google accounts down across the board without warning - because users were using pseudonyms.

I only learned about this within the past 24 hours (I guess I've been too buried in research about antigenic variation and serology to notice the news lately) and was disturbed to hear about what happened to GrrlScientist and her accounts.

Apparently a lot of people's accounts were suspended without prior notice, and outrage over this spread across the blogosphere. Search online for "privacy, pseudonyms, and google accounts" and you are likely to find more information on this action from more than one web site.

At any rate, looking at the stream of events unfolding, I've had to wonder if Camp Other blog would be next. If so, I'll be posting an announcement on Lymenet Europe letting people know where the site would be getting moved - somewhere without a policy that discriminates against anonymity - and pseudonyms in particular.

THE STORY TODAY:

But, it may be that my search for an ISP to host my blog would be premature, as I just came across an announcement from Bradley Horowitz on Google+ that came from a discussion between Robert Scoble of Rackspace and Vic Gundotra, Senior VP of Social at Google - the most important snippet posted below:

MYTH: Not abiding by the Google+ common name policy can lead to wholesale suspension of one’s entire Google account.

When an account is suspended for violating the Google+ common name standards, access to Gmail or other products that don’t require a Google+ profile are not removed. Please help get the word out: if your Google+ Profile is suspended for not using a common name, you won't be able to use Google services that require a Google+ Profile, but you'll still be able to use Gmail, Docs, Calendar, Blogger, and so on. (Of course there are other Google-wide policies (e.g. egregious spamming, illegal activity, etc) that do apply to all Google products, and violations of these policies could in fact lead to a Google-wide suspension.)

Camp Other doesn't use Google+ in the first place, so I am making the assumption based on the above that my blog will continue to operate on Blogger as it has been.

If something changes... well, you know where to find me. And if Lymenet Europe for some reason goes down, I'll post to CanLyme, and so on - to other Lyme disease related forums which have not unceremoniously banned me.

CO

PS: Just in case you wondered, I make a regular backup of all the site entries. Reformatting the content and moving to another web site host may not be a trivial matter, though, so I don't want to do it unless there's a very compelling reason.

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0 Daily Kos Posting Tomorrow At 6:30 PM EST

Please note that another entry will be posted on the Daily Kos tomorrow, May 26, Thursday at around 6:30 PM EST in observance of Lyme Disease Awareness month.

That is: 12:30 HST,  3:30 PM PST, 22.30 UTC (GMT)

The topic for this Daily Kos posting is going to be Long Term Antibiotic Treatment and asks why this is considered a controversial treatment for persisting symptoms of chronic Lyme disease as well as its named counterpart, Post-Lyme Disease Syndrome.

Check it out tomorrow at the below link - and comment there if you have a Daily Kos account:


http://www.dailykos.com/blog/Lyme%20Disease%20Awareness


As an extended side note, there will be discussion on the long term use of antibiotics to treat acne - and related to this, I really find this dialog on a Medscape transcript for a medical education credit class, "Long-term Oral Antibiotics for Acne: Focus on Safety (Slides With Transcript)" to be interesting and totally apropos to tomorrow's post:

Dr. Eichenfield: Yeah, and many times in practice I actually have the discussion with the patient where I've said, "Look, we don't want you on long-term antibiotics if we can help it. You're doing great." We have a decision to make here, and it's really a binary decision. Try to get them off the oral antibiotic at that time substituting topical or rolling it on a few more months. Depending upon how severe their disease was previously, I wouldn't mind another 2 or 3 months on balance in taking care of that patient.

Dr. Thiboutot: I think you really have to go by what their disease is telling you. That's absolutely important.

See the entire transcript and thumbnails from the slideshow at:
http://www.medscape.org/viewarticle/588328

It's definitely food for thought when thinking about approaching the treatment of persisting symptoms of Lyme disease from different angles.

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14 Chart: Ways To Discuss Your Position In An Argument

Referring back to this entry: http://campother.blogspot.com/2011/05/repost-lyme-disease-rant-wall-of.html, here is a chart that shows different kinds of interactions one can have during a discussion with opposing positions.

From observation, discussions where parties hold conflicting views tend to degenerate and become either flaming troll wars or stalemates when anything from contradiction on down through namecalling is applied.

When Counterargument, Refutation, or Refuting the Central Point are used, the discussion is far less likely to degenerate into a flaming troll war and is more likely to be productive - people are more likely to walk away from the discussion not only having a better understanding of others' views, but also having a clearer understanding of what they themselves do not understand or where they lack knowledge...

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5 Commentary: Looking At Lyme Groups on Facebook

After there's been much brouhaha over my first forum banning - more than I expected, actually - I'd like to take a little time-out from that to look at the many Lyme disease-related groups on Facebook.

But before I begin, apologies, to those of you who ended up on this page after using google and realizing it's the wrong page...

Sorry, to you who are tourists on your way to Connecticut who just found this page and are scratching your heads after you googled looking for information on Old Lyme and Lyme, Connecticut - I suggest you put "- disease" in your search box in order to remove mention of Lyme disease from your results.

And to the residents of Lyme and Old Lyme, I am very, very sorry... you have probably had enough of your beloved hometowns being associated with a tickborne illness. That really sucks, as both towns have things to see and do which do not involve infectious diseases, like visit the Florence Griswold museum.

The rest of us reading along hope to someday be amongst the residents to your north in Hadlyme... if that name has anything to do with the condition of its residents, that is.

Okay, now that those who are looking for other things have gone elsewhere - such as their fabulous vacation to Old Lyme - you should know upfront that if you are expecting an in-depth review of groups here, that is not what you're going to get today.

Do you know why? Because there are too many groups and pages for Lyme on Facebook.

Just typing "lyme disease" into the search box led to my poor arthritic finger getting worn out from hitting "More Search Results" at the bottom of the page. I don't know where to even begin, and anyone on Facebook who is new to Lyme disease probably won't know either... It's like 300 channels of cable, baby, and nothing on!

Okay, it's probably not that bad, but...

The images to your left are just a fraction of the groups which exist on Facebook for those who want to learn more about Lyme disease. I only posted about three screens of them... I could have copied and pasted more, but I do have a limit to my energy (and sanity) for all of this.

Imagine being diagnosed with Lyme disease and trying to find information and support on Facebook.

The options are overwhelming.

Obviously, if you know to look for a local support group, the task might be easier for you because you can start by looking up the nearest town or city which has a support group.

But there's a lot here to look at... and sort through overall.

Other than by your location, how do you determine where to begin when you are totally new to the scene?

And even if you aren't new to the scene, how do you find specific subsets of groups you might want to join without knowing where to look in advance?

Maybe you want to sort by different categories of Lyme support  or information groups - but there are none organized there to sort by.

Looking at it all, I think one thing that would help is if people got a whole lot friendlier... You all need to get closer together and support one another, it's important in these times.


For example, let's say I'm new to Lyme disease and I want to find friends who can relate to what I'm going through. So I type "lyme friends" into the search, and here's what I get...

Wow, a lot of Lyme friends!

(Again, apologies to the East Lyme Friends and Friends of Lyme groups... I think you are probably waiting to befriend those tourists I was talking about earlier...)

But as for the rest of you - especially those poor 2 people at the very bottom - you seem kinda lonely down there...  And yet, you are friends, too.

Wouldn't it be nice if you got together and all made one giant group of friends?

Or, if that doesn't work - and you are all fighting each other - can't you each at least call yourself something else different?

There are so many places where I can see the possibility for combining forces, really, and that alone would cut down on the sea of groups I am drowning in...

Like you guys...






Ought to get together with these guys...

And you guys...

Really need to talk to these guys...

Maybe these guys...

should seriously work with these guys, too, no?

I also think that these guys...

really need all the support they can get, as Lyme disease has been considered even more controversial to have in their country.

I really wonder sometimes about people's individual stories, too...

Maybe this person should consider....

getting together with this one?

Maybe they can help them with Lyme Disease and support each other in getting well and getting back to class.

On the other hand...

I think these guys...

probably shouldn't talk to these guys...

unless they stop using the word "gay" because it could possibly lead to some heated arguments.

The healthy thing, of course, is to take on the right attitude...

And probably avoid looking at the dark side of things too much.

Including the unfortunate side of Facebook, where Facebook's format and coding just messes everything up. 

Such as...

3 people like this?

No one likes that. 

Bad, bad, Facebook. You're not getting a gift next Christmas. Not even coal.

And not to be outdone by the poorly misplaced "Like" above, there is always the unfortunate placement of seemingly unrelated events to others...

I knew some of us needed medication, but this is ridiculous... 

Okay, "Thorazine Overdose" looks like it's the name of band, but why is it next to entries about Lyme disease?  

Note to bands: If you are holding a Lyme benefit, put that at the top of your announcement.  

Almost last but not least, if you are really lost in all of this and there is no way to find your way around this - someone put together one group to rule them all...

With 488 members - and possibly more now, since I've posted this - there has to be some sort of index or guide to it all!

This work by Camp Other is licensed under a Creative Commons
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0 Dear fuzzy bunny letter

Dear fuzzy bunny,

Yes, that would be you.

Please know that as cute as you are and as much as I appreciate it that one of my social networking friends was wishing me well and put you on my support group wall, you just don't understand.

Yes, I know you, and know the intentions behind your being posted - to cheer me up after a hard day (week? month? year?) of feeling lousy - but to be totally honest? Fail.

What I really need is for there to be a safe place for my frustrations to be aired, and for some well-reasoned plan to improve the life of many patients to be put into effect.

Just so you know, I was really happy when I got my first fuzzy bunny years ago. I was new to having Lyme then, but I thought a few months into it was already a bit too long to have a flu plus mono and arthritis combined. And I was confused, and so glad that I had your round little face to look at in the middle of a 2 a.m. Herxheimer reaction. So relieved to know someone was on the other side of the country who was going through the same experience I was and understood the pain, the isolation, the rejection, and the misunderstanding I was enduring.

But now, it's been years of the same thing. More bunnies than I can count. They kept multiplying, like the denialists. And they didn't help me with my anger and frustration.

Life has been a rollercoaster full of doctors appointments and medical tests, research publications and blogs, networking with people I've never known and even never thought I'd know, and enduring long stretches of pain, insomnia, and grief through it all. It's been time spent trying to understand the system - whatever "the system" is - and how a small committed group of individuals can make a difference. If they can make a difference at all, that is.

But it's also been reflecting on Willy Burgdorfer saying:

"The controversy in Lyme disease research is a shameful affair. And I say that because the whole thing is politically tainted. Money goes to people who have, for the past 30 years, produced the same thing: nothing. Serology has to be started from scratch with people who don’t know beforehand the results of their research.

There are lots of physicians around who wouldn’t touch a Lyme disease patient. They tell the nurse, “You tell the guy to get out of here. I don’t want to see him.” That is shameful. So [this] shame includes physicians who don’t even have the courage to tell a patient, “You have Lyme disease and I don’t know anything about it.”

At least my primary physician had the courage to tell me that, and also told me to keep seeing my LLMD because s/he knew what to do with my condition. It was more support from this unpredicted source for which I'm grateful.

And then there's THIS bit Willy said:

"I am a believer in persistent infections because people suffering with Lyme disease, ten or fifteen or twenty years later, get sick [again]. Because it appears that this organism has the ability to be sequestered in tissues and [it] is possible that it could reappear, bringing back the clinical manifestations it caused in the first place. These are controversial issues for microbiologists, as well as the physicians who are asked to treat patients."

Seriously, bunny? If the man who discovered Borrelia burgdorferi said this in an interview and more people still aren't taking notice - including the Chicago Tribune - something is wrong. Really wrong.

Fuzzy bunny, you aren't helping me solve this problem. I like and appreciate being supported just for being me and for being human and having a rough time, but what I really want is help solving this problem.

I don't want three more months of the life I've had to lead with Lyme - let alone 30 years of the same thing.

Fuzzy, if you're going to do something other than look cute, please ask Willy what we should do, since he knows more about it than I do?

Thanks!

This work by Camp Other is licensed under a Creative Commons
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