0 Admin Note: Pardon The Mess...But I'm Changing The Blog

You might have noticed that this blog has had its format changed a lot in the past 24 hours. Apologies to anyone who found it disorienting, but it was something that had to be done.

Initially my intent was to do one thing and one thing only:  make room for an upcoming post which contains a wide table that wouldn't fit in my 3 column format. So I began pushing the links and widgets from two separate columns into one column so I could have a wider area for posts. Then I realized that it took much longer for the page to load, and there was a big white space below the posts next to the giant list of links I was forced to make when moving them all into one column.

Suffice it to say, one thing lead to another and before I knew it, I was more than halfway through an overhaul of the site's layout.

So here we are... I'm not sure I'm done with it (though hopefully close to it) and if you're a regular reader of this blog, it might be useful for me to point out what these changes have been, how they might affect you, and my thoughts on any near-future changes:

The logo has taken a vacation.

It's nothing personal, it just needed a break (as I have as well) and was tired of holding up the top of the page. So I took it offline, where it has decided to go off to a spa in Bayern, lose some weight, and promised to introduce me to some new friends. (I'm not sure what to make of this, but at any rate, hopefully our new logo will come back, refreshed and resized.)

"Posts people are reading this week" list was removed.

The posts which were on that list were there mainly because people found them through a search engine or were already familiar with the blog and came back for a second look. Few people used them to read an older post, and more than half of my readers are regulars looking for new posts. Given this, I decided to retire this list.

The long list of blog post links which bordered the left side of the page have been moved.

They have not been deleted, they now live on their own page which is linked to on the toolbar at the top of this page: Popular Posts.

Interesting as they were, they began slowing down the loading of this page and their presence prompted me to install a third column to the layout in the first place - which I now realize was a dumb decision if I ever intend to put tables of data on my blog or perhaps might want to post a diagram, scientific illustration, web comics, or a video with large dimensions. (The table on this page about tickborne disease transmission times already looks better.)

Sometimes less is more. So right. Gone.

<<  The "view all posts" link is gone, along with its cool retro graphic. 

Sorry, it just had to go. I hadn't clicked on it in a while, but a few days ago I tried it and found out it didn't work. It didn't work on my laptop, it didn't work on phones... it didn't work on anything. I don't know if Blogger decided to no longer support this feature or if it just stopped working with my blog once it reached a certain number of posts. Either way, it isn't working so it's gone.

If you used it a lot (or even at all), I recommend that instead you either search for a blog on a given topic by using the handy search tool on the sidebar or scroll down and browse the archives to find a specific blog post.

The blog rolls for science blogs and Lyme disease patient blogs (relocated to the footer below) now display the 5 most recently updated blogs. 

I have had a hard time deciding what to do with displaying blog rolls - particularly patient blogs. Two of the blogs on my patient roll as of this writing are no longer writing about Lyme disease. They have moved on, which is great news - but I'm not sure whether to retain their blogs since they are either unlikely to be updated or will be off topic. My compromise for the time being was to set the blog roll widget to only display the top 5 most recently updated blogs and the rest remain behind a link, where if you want to see them, just click it and the rest of the blogs - outdated as they are - will display.

It may be that I end up removing some of the blogs from my rolls and replace them with others. I haven't decided yet, but I could use recommendations for good blogs by patients about science and chronic illness management in general to add to the rolls. I've been thinking broadening the category from "Lyme disease patient blogs" to something more general about chronic illness (but which is still focused more on Lyme disease and other tickborne infections). Nothing solid yet. Update: I added "chronic illness" to the blog roll title, and PhDisabled blog.

Future changes?

I don't plan on making major future changes after this any time soon, unless one counts refreshing the logo (or header and logo area, to be precise) as a major change. My basic aim lately is to simplify everything, though, so you can at least make some predictions what direction near-future changes in the design and layout of this blog will be.

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4 Admin Update: Comments on Embers Research; Site Changes Coming

Quick update here from Camp Other:

First, I've finally written some comments on select excerpts from Embers et al's most recent publication, Persistence of Borrelia burgdorferi in Rhesus Macaques following Antibiotic Treatment of Disseminated Infection.

Read more here: http://campother.blogspot.com/2012/01/paper-persistence-of-borrelia.html

Second, I'm looking to overhaul the site in the coming days. So expect some changes - possibly major changes - as I want to streamline Camp Other blog. Comments are welcome on the process as it unfolds.

Over and out...

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0 Camp Other Blog: 2011 In Review

A little over a year ago, I set out to write about the Chicago Tribune's article, "Chronic Lyme: A Dubious Diagnosis". My analysis of that article formed the basis for this blog, and from there, I hit the ground running.

I didn't know how long I'd write here or how often. Or know whether or not wrestling with chronic illness would interfere with writing. Sometimes it has. Sometimes it hasn't.

One year later, and I'm still here. Perhaps a bit battered around the edges. Tired. Exhausted. Overwhelmed, even. Disappointed with the lack of more treatment research for myself and my fellow sufferers. But also more knowledgeable, less naive, and more curious than when I began. Open to more new ideas. Questioning.

I'm somewhat amused this blog gets as much traffic as it has during the past year and it has only increased as time went on. I never expected it to be The Popular Blog Online, given the somewhat esoteric subject matter at times - but perhaps these stats mean something?

January 2011: 1,379 page views
March 2011: 2,539 page views
June 2011: 3,957 page views
November 2011: 5,579 page views

And for the most part, this trend in traffic increase continues. It only tends to dip down when I don't write something for a long time.

There were over 40,000 visits to this site during 2011 from over 114 countries - with the top ten countries' visitors coming from the United States, Canada, Russia, Slovenia, Germany, United Kingdom, Ukraine, Netherlands, India, and France. And there are over 104 more, from Australia to Algeria. This blog has had an ongoing international audience since it began.

Where Camp Other Is Read: Around The World

On average, about half my visitors are people who return to read something new on my blog. Some are repeat checkers who must hit refresh for the homepage daily or something. Sometimes they are deliberately looking in my archives. (I don't know why - hey, you're reading - perhaps you can tell me why?) The other half of my visitors are people using google and other search engines for specific research, possibly for university papers or their own personal education. Their keyword searches are often incredibly specific; with a keyword choice like "Borrelia burgdorferi + bacteriophage" they often end up here.

I didn't know who would be interested in reading along. Or how many people would want to scour Lyme disease related research and publications with me. But it seems like quite a number of you are interested because you keep coming back.

To you, I say thank you. Even if you have never commented on this blog, if you have been getting something positive out of being here and learned something new, that makes it worth it to write. It inspires me to keep going even when the going is tough.

(And I will say that my underwhelming publishing schedule in December was not only the result of holiday insanity/busyness my family participates in - it was also the result of life and my health being tough.)

(And it still is. I can't guarantee any sort of content/timeline/publishing schedule right now.)

But I made it this far, so I'd like to share some of the highlights of this blog from 2011:

In January, the blog looked at polymicrobial infections - also known as Lyme disease coinfections. How common are coinfections? What is the most recent body of literature on coinfections? What kind and severity of symptoms do patients with coinfections have? We took a preliminary look at these questions.

In February, we examined the different uses of the term, "chronic Lyme disease", and I wrote about how the IDSA Lyme disease guidelines group would label my condition - versus how patient advocates would label my condition. This link has been very popular during the past year up to now: http://campother.blogspot.com/2011/02/is-chronic-lyme-real.html

In addition to wrangling with disease definitions, in February there was much buzz about an old patent that I decided to comment on (including for its use of the above terminology), the VlsE sequence in Borrelia burgdorferi (as discussed at the 2010 Institute of Medicine workshop on tickborne diseases), and the interesting package insert from the Athena Multi-Lyte Borrelia VlsE Test, which states, "Lyme disease occurs in stages, often with intervening latent periods and with different clinical manifestations," and "Also, early antibiotic therapy after EM may diminish or abrogate good antibody response. Some patients may never generate detectable antibody levels." Yes, Virginia, there can be seronegative Lyme disease.

In March, the blog reviewed the 1993 U.S. Congressional Senate Testimony On Lyme Disease in two parts, including questions and commentary on various sections. We also discovered the value of anecdotal evidence, and offered links to online video tutorials on the immune system for beginners.

In April, we introduced readers to a blog about spirochete microbiology, Spirochetes Unwound. We also reviewed an outline of the book, "Borrelia: Molecular Biology, Host Interaction and Pathogenesis", and listed many definitions and terms used in Borrelia microbiology. Two other popular articles or series were published during this month - a two-part series on phage therapy: "One Way To Treat Borrelia Naturally?" and "Phage Therapy and Borrelia burgdorferi". We also shared a two-part series on neuroborreliosis based on the Institute of Medicine's 2010 tickborne disease workshop notes, and shared the news that a serious allergy to red meat can develop in some people who have had a tick bite.

In May, Camp Other blog contributed a series of posts at The Daily Kos in observance of Lyme Disease Awareness Month, and reposts of these posts can be found in May 2011 archives. Of the lot, I think "Lyme Disease Rant: The Wall Of Polarization" is particularly important for those engaged in discussing both sides of the Lyme disease controversy online. We also looked at someone's thesis, "Environmental Stress in Borrelia burgdorferi", and some initial late stage Lyme disease study outcomes from the 2000 Lyme disease guidelines.

In June, the blog took a preliminary look at the 2006 Lyme disease guidelines, examined the paper - "Borrelia burgdorferi RST1 (OspC Type A) Genotype Is Associated with Greater Inflammation and More Severe Lyme Disease" - on the growing evidence of differential pathogenicity among Borrelia burgdorferi genotypes in the United States, shared Dr. Elizabeth Maloney's critique of the IDSA Lyme disease guidelines, and wrote a critique of a (which has yet to be confirmed as official) letter from the CDC to a Lyme disease patient who had written looking for more information on Lyme disease.

In July, we referred to our favorite spirochete blog, Spirochetes Unwound, to learn more about Barthold's study on how Lyme disease affects the immune system in lymph nodes, asking the question: "Does Borrelia burgdorferi cause an inadequate antibody response by altering B cell activation in the lymph node?" We shared an overview of Lyme disease in vitro studies showing intracellular behavior, examined how Google can aggregate data sets for Lyme disease using Google Trends, and broadcast the news that a teen from North Carolina developed a serious allergic reaction to meat after a tick bite.

In August, the blog discussed the publication of a paper on the link of antibodies to long term symptoms related to Lyme disease infection, introduced readers to a new patient blog: Lyme Jello, and examined whether or not there is a connection between different genetic haplotypes (HLA-DR#) and Lyme disease in two related posts. I think, though, that the most profoundly compelling post of August (and related to the previous two) was this one: "Immune + Infection = HLA-DR alleles determine responsiveness to Borrelia burgdoferi."

In September, the blog looked at the development of new Lyme disease detection tests for patients, published two articles on the recognition that Borrelia miyamotoi can cause infection in patients in the United States, speculation about Borrelial blebbing and camouflage, and speculation on the role of cholesterol in Borrelia burgdorferi.

In October, the blog speculated what kind of new Lyme disease research may be useful, we learned that a Chacolithic iceman from 5,000 years ago had Lyme disease, we looked at a new molecular test which may be able to detect early Lyme disease, and reviewed the Stony Brook Young Investigators Series On Lyme Disease.

In November, the official final report of the Institute of Medicine workshop was published on Pubmed: "Critical Needs and Gaps in Understanding: Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes," a Tularemia outbreak hit Australia, and there were two notable articles published on long-term outcomes of antibiotic use as well as using cathelicidins as an alternative to antibiotic use. Perhaps one of my favorite links for November was about a series of articles by Slate on the use (and drawbacks) of the murine (mouse) model for researching human models of disease.

In December, the blog shared an outline and separate discussion on presentation summaries from the 2011 Lyme and Tick-Borne Diseases National Conference held in October 2011. The news of a new strain of Ehrlichiosis that is causing disease in Sweden was reported, and we took a look at concerns over a Canadian freedom of information request and response over patient advocacy and supportive treatment of Lyme disease at a new Vancouver Complex Chronic Disease Clinic.

So, those are the highlights of the past year in review.

What will 2012's blog posts have in store for you? Stay tuned...

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2 Admin Update: Lyme Disease Awareness and Outreach

There are a lot of ways to spread support for Lyme disease awareness. Some people make web sites, some people make Lyme disease related clothing, some people make bracelets and other jewelry, and then others make the popular Lyme disease support ribbons. Some people hold fundraisers like Lyme walks or benefits at local bars.

Here in the virtual world, we can't really give each other tangible items to wear and hold, but we can make representations of them.

I've been searching far and wide to find something that would represent my strong desire for support for more Lyme disease research, and perhaps my search-fu is broken, but I couldn't find anything suitable after googling "Lyme disease support ribbon" and "research".

So I initially found a commercial support ribbon generator and played with it... Netting this result:

And I realized that wasn't really working for me.

So I've been working on creating my own awareness and support badge, and here is my rough draft:

What do you think?

It's only a rough draft, mind you, and will need to be rescaled.

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4 Admin Update: Scavenger Hunt Extension, Vote On Topics, Busyness

To my readers:

Hope you have been having a decent week and that this weekend is a good one, too.

As for me... I have been either busy or markedly unwell during the past week and a half, thus the slow down in posting frequency here.

I think there's a correlation there, too: Any time I do not get enough rest and push a little more than I should, I end up paying for it.  This has been what has happened recently, and today I had a really hard time getting out of bed.

Hopefully this weekend will be better.

Lyme Disease Research Scavenger Hunt Announcement

Regarding the Lyme Disease Research Scavenger Hunt, I am giving participants an additional week. Please submit your entries for Round Three no later than next Friday, October 14th, 12 am Hawaiian Time.

After the 14th, if no entries have been submitted for Round Four, I will post the answers for both Round Three and Round Four.

I expect the game will have a few more rounds through November, at which point the winner will get to pick the topic of their choice related to Lyme disease and coinfections which I will hand illustrate.

Request For Feedback: Vote For One Of Next Week's Post Topics

I'm outlining some upcoming topics for new posts and would like to hear from feedback from you.

Which of the following are of the most interest to you? How would you rank them in order of importance?

1. Why is (or isn't) neuroborreliosis a big problem?
   
2. Commentary: Scientific rigor and providing evidence for chronic Lyme disease
   
3. Commentary: Why (and how) contracting Lyme disease has driven me crazy
   
4. Lyme disease animal studies
   
5. Part 2:The Value of Anecdotal Evidence (Here's a link to Part 1.)
   
6. Other: _________________ (topic YOU think is important to read about)

Keeping it simple for now, narrowing it down to these few choices.

Okay, I'm going to call it a night. I'm tired.

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2 Admin: Writer's Scatter, Rather Than Writer's Block

A more personal note here from CO:

I think I have the opposite of writer's block at the moment, and I'm calling it writer's scatter. While Lyme disease has left me with shoddy memory at times (Did I leave the water running? Did I leave something in the toaster?) in terms of concentration I am all over the map. I can be intensely focused on something for hours and the rest of the world disappears, or I can be so mentally scattered my mind will not rest on one idea at a time for more than a minute or two.

This is where I am at the moment, and it looks to all the rest of the world like ADHD. Except... for the most part, people don't see me as being hyperactive when my butt is firmly planted to the sofa all the time. But if they could see inside my mind, then what they'd witness is a very different phenomenon. It's one that is making it very hard to write about any one thing now.

I'll give you a peek into my stream of consciousness at the moment, so you can see just how many branches are splitting off the old mental tree:

I'm thinking of the letter that was recently published to the Lancet which I've ranted about, and the reception to that rant. A lot of people visited this site in the past couple days to read that rant, but only few people commented on it here. Why is that?

I'm thinking about how being a doctor is different from being a researcher and what that means when someone is discussing treatment versus discussing evidence-based medicine. Are these two things always the same things? Are they different things? When is and isn't that okay?

I'm thinking about the use of ketamine in mice to sedate them during experiments and wondering how that might influence the outcome of testing the effect of Borrelia burgdorferi on the immune system. I even wrote a post about it months ago but have never posted it, thinking few people would want to read about it.

I'm thinking about this stack of paperwork I have to sort through and find irritating to do so. I have to make some phone calls in the morning. I need to sign and put some forms in the mail. I am bound to not do half of what I need to do even if I write it down.

I'm thinking about my posts from months ago where at the bottom of each, I've written "to be continued in part 2" or "more in a future post on this topic", and part 2 hasn't been written nor has a future post addressed that topic. Where do I begin, when so many other topics and news have grabbed my attention and inspired me to write - and these old threads which have been postponed have not?

I'm thinking about how readers have suggested topics for me to write on and I haven't gotten to those, either.

I'm thinking about how it is that on some Lyme disease support groups - if you don't share the same opinion as the majority does and your difference of opinion makes others bristle rather than ask questions out of curiosity - how difficult that is for you to find support when you are already marginalized by illness.

I'm thinking about how the hell the kitchen is going to get clean given the state it's currently in. It looks like someone put a detonator in the crockpot and it went off. Five alarm chili just might mean anyone who looks in that kitchen is going to be alarmed... It is going to take a long time for me to do anything about it and I can only chip away at it for a few minutes at a time before my arms get too worn out.

I'm thinking about coming up with my own lazy bachelor with a chronic illness cookbook. It must include mixed drinks and easy snacks. Some of the recipes need to burn the roof of your mouth and clean out the sinuses, too. I don't want these recipes to be bland by any stretch of the imagination.

I'm thinking about all my friends who were in the path of the hurricane and lost their power. (Mine is fine, thankfully.) I've heard from most of them - their basements are soggy but they are alive and mostly well.

I'm thinking about how a year ago I told someone I don't want to be defined by this disease and I want my life back. And here I am, writing this damned blog. How did that happen? I swore I would get better and never do something like this. Yet here I am.

My ears are ringing. I need more sleep. So I'll end things here for the night.

Besides, I will just continue to have more random thoughts racing through my head like this until I pass out.

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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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19 Admin Update: Holiday break & Request For Topics

I've been pounding the keys pretty heavily in the past couple days on commentary, and after taking a break for a few days, I would like to get back to discussing more of the science of Lyme disease.

I have some topics in the pipeline I can write about, but I'm putting out a request for feedback here:

What Lyme disease and other tickborne infection topics would you like to know more about?

Please leave your topics in comments - your top three choices if you have them, but one is okay, too.

Thanks!

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5 Admin Update: Health Report

Been away from writing for the blog for a week, other than adding a few blogs and web sites to the right column of this page and responding to a few comments.

Just haven't been feeling my best - though over the past several months, my symptoms have been milder than usual and I was hopeful my last run of antimicrobials did a lot of good.

But last week, something new and annoying: Stabbing pain in my back and side, pain radiating down into my groin, fevers that come and go, and relentless nausea and lightheaded dizzyness from not being able to eat anything. Pain when I urinated, but it wasn't always there.

I was advised to take painkillers, go on a light diet for a few days, and drink a LOT.  And rest. Sleep as much as I could.

Which I have, and not necessarily by choice... I have found myself passed out in the middle of a video game I was playing or something I was trying to read. And at night, I'd be up with pain and not able to sit for long -  I didn't feel up to writing online much.

I'm feeling somewhat better now. I'm supposed to go back for a followup appointment soon. 

In the meantime, I'm hoping I'll write something more here - it just isn't coming together that quickly at the moment.

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5 Admin Update: Sick / Spam Notice

CO is feeling pretty sick today, and hasn't exactly been doing great for the past couple of days. Needs to get doctor's appointment soon - may not be Lyme-related issue but something else requiring attention. Sparing you the details for now.

Feel free to read through archives here and leave comments/questions, but can't guarantee how quickly there will be a response.

General note:

All comments regarding selling of  any service or product etc. will be deleted immediately. This is in response to the recent comment I received from a chiropractic service on one of my posts. Please do not use this blog to sell anything. Thank you.

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0 Administrivia: Most Recent Posts List Removed

Unfortunately, the service which provides the "Most Recent Posts" list plug-in has been down or at least producing code that isn't generating the list automatically - so I have had to remove that broken plug-in for now.

Sorry for the inconvenience for anyone who was relying on it. I recommend using the search function or scrolling down to the archive post section to find newer posts.

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0 Admin Update: Blogger.com Service Fail

If you've been reading this site and noticed that more recent posts have disappeared, you're not alone.

Blogger has been having maintenance and service problems since earlier this week, and for the past two days I have not been able to access to my own blogspot account to post, comment, or design any aspect of the site - along with thousands of other bloggers have been locked out of their own sites.

The missing posts and comments are supposed to get restored. If not, I will have to try reposting the Daily Kos entry that has been lost, and rewrite and repost an entry on new tests for neuroborreliosis which has been lost.

I do a periodic backup of all my site posts - but hadn't just before this recent maintenance snafu. My apologies to my readers whose comments were lost - I don't know if those will get restored, even if entries are.

Edited to Update:

FYI - I just found this from the Blogger Buzz web site posted around 10:30 AM PST:

Source link:http://buzz.blogger.com/2011/05/blogger-is-back.html

What a frustrating day. We’re very sorry that you’ve been unable to publish to Blogger for the past 20.5 hours. We’re nearly back to normal — you can publish again, and in the coming hours posts and comments that were temporarily removed should be restored.  Thank you for your patience while we fix this situation.  We use Blogger for our own blogs, so we’ve also felt your pain. 

Here’s what happened: during scheduled maintenance work Wednesday night, we experienced some data corruption that impacted Blogger’s behavior. Since then, bloggers and readers may have experienced a variety of anomalies including intermittent outages, disappearing posts, and arriving at unintended blogs or error pages. A small subset of Blogger users (we estimate 0.16%) may have encountered additional problems specific to their accounts. Yesterday we returned Blogger to a pre-maintenance state and placed the service in read-only mode while we worked on restoring all content: that’s why you haven’t been able to publish.  We rolled back to a version of Blogger as of Wednesday May 11th, so your posts since then were temporarily removed. Those are the posts that we’re in the progress of restoring. 

Again, we are very sorry for the impact to our authors and readers.  We try hard to ensure Blogger is always available for you to share your thoughts and opinions with the world, and we’ll do our best to prevent this from happening again. 

Posted by Eddie Kessler, Tech Lead/Manager, Blogger

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0 Administrivia: Camp Other on Daily Kos For Lyme Disease Awareness

And now the announcement I've been meaning to make this weekend (and part of the reason for my continued delay in adding comments to the most recent Friday Four post and decision to put the Friday Four on hiatus for at least one month):

I am going to be writing and posting to the Daily Kos during May for Lyme Disease Awareness month.

My first post permalink is here: http://www.dailykos.com/story/2011/05/02/972070/-Camp-OtherLyme-diseasescience?detail=hide

I will be posting some posts specifically for the Daily Kos audience, so they will only be available if you go to the Daily Kos site. The remainder of my posts I intend to cross-post to both this blog and the Daily Kos diary

I have not yet determined how long I will have a presence on Daily Kos - I will see how this goes and what level of discussion posting there provokes. I look forward to seeing what happens.

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0 Administrivia: Notes & Future Topics

Just popping in here for a moment amid fighting off some strange viral infection to leave a few short notes for my readers:

• When I'm feeling particularly unwell above and beyond my usual unwell, posting frequency may slow down. I'll try to give advance notice in comments or in a post like this one.
  
• Here's your notice: My posting frequency is slowing down now because I'm unwell.
  
• In general, new posts are less likely to be made during the weekend. What do I mean by "weekend" given everyone reading is in different time zones? Refer to island time.
  
• If I'm near a computer, I will check comments in the moderation queue during the weekend and post them.
  
• I may or may not respond to comments during weekends.
  
• Friday Four posts are sometimes posted as late as midnight Friday, Honolulu time (-10 h UTC/GMT).
  
• Reader comment & mailbag has included the following requests for further discussion: the immune system and how to build it, alternative medicine, XMRV, Morgellons, and the effectiveness of canine Borrelia blood tests.
  
• I plan to write an entry or two on each of these topics in the future. There is no guarantee on how soon each will be addressed. The timeline for each is dependent on my health, availability, other preexisting or newsworthy posts already in the pipeline, and the amount of time needed for additional reading and research to address each issue.
  
• Lymenet Europe has some interesting threads on Lyme disease organizations throughout Europe. I recommend viewing some of them, as well as guidelines different countries use. Tip: If you use the Chrome browser, you can translate web sites in other languages into English with a click of a button.

And now your moment of patient experience zen... This is something I think about when I get sick or am more symptomatic than usual - maybe some of you reading along will see yourself in it, too:

All I have to add for now. I'm going to lie down.

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33 Having a Dialog About Censorship

This has been a crazy week here at Camp Other.

I was originally going to post my usual Friday Four science column, but it may just slide to the Saturday Six or something like that.

I have something else to say now, and I'll post more science later.

This post isn't about being banned from a forum, if you were expecting to hear more about that... Yes, I was puzzled why I got banned, and so were others. It happened, I wrote about it, and then I was going to move on.

However, I can't completely move on without saying a few things about the comments I've been receiving.

Right now, what I'm hearing and seeing is that people have been asked on the forum to not even mention the name, "Camp Other".

Not to speak about it, and any attempts to discuss it will lead to the thread being closed.  A request was made to PM the moderators about anything having to do with Camp Other instead.

And I'm also getting comments and reports about other people who think they've been censored, and think censorship on various groups has gotten out of hand.

Why I'm being censored now, I don't know - I consider this the hallmark of absurdity.

First banned, now censored?

This is a blog about science and social issues surrounding Lyme disease and other tickborne infections.

Mentioning this blog anywhere really shouldn't be that controversial... I don't think anything I've said anywhere online is that particularly controversial, other than occasionally I mention the somewhat-controversial-to-mainstream-medicine-IDSA-guidelines idea that Lyme disease might be a persistent, chronic infection.

But I want to say something about the people left behind, because what is happening there is controversial:

People shouldn't have to be in fear of what they say getting taken out of context, or be afraid to ask or be asked a challenging question - or be afraid, perhaps, of not saying something quite the right way using the right words.

What we need to do when people disagree, or challenge assumptions, or ask for more information is to simply respond to that: Have a dialog. Talk. Discuss.

A lot of misunderstandings that people have can be cleared up when they have  a meta-discussion - which is a discussion about how we discuss things and why we discuss things the way we do.

Shutting people down, kicking them out, closing the door, and putting earplugs on doesn't make them go away. They're still out there, saying something to someone - maybe even about you - only now you can't hear them.

Even if you can't hear them and they are far away, chances are the ideas they hold dear and the values they possess may be found in the next person who comes in the door, a stranger who greets you, or a random person who shows up on an online forum.

And then you will have to deal with those same ideas, same values, and other things you may disagree with or be challenged by.

People will also have an effect on those they leave behind whenever they go away - there are always ripples in their absence, whether they left because they were banned, left of their own free will, left because their computer died, left due to poor health, or any of a number of reasons.

Because when it comes to being amongst other patients - we all ultimately share in the same suffering and want the same things. And we notice that absence.

What makes a support group what it is is the patients, more than anyone else. And the needs of patients are what is paramount: building community, research, safety, understanding, proper diagnosis and treatment, and support. And just knowing that we're reaching out to others who are going through - or have gone through - the same things we have.

Maybe how each of us express our needs for those things differs, and maybe how we hope to achieve it differs - but the bottom line is that through dialog we can discuss those differences rather than deny them, or push them away.

Censorship is not the way to go. More communication is, in my opinion. Even if it's somewhat messy and misunderstandings take place. That's what compassion and forgiveness are for - allowing mistakes and accepting apologies.

If someone is truly being egregious in their behavior on a forum, that's one thing - and I think one has to draw the line somewhere. Somewhere reasonable.

I may have only been on this one forum for a few months, but that's enough time to see how things went - and it's particularly telling how things went after I've been gone. When people voluntarily leave due to censorship and people try to leave because they want out, that's saying something about the atmosphere they're in.

I don't like it.

I want anyone who posts comments to my blog to know that I will do my best not to censor any of you and let you speak your mind. Obviously you have to follow Blogger's terms of service - I have no control over those - and I have a rule that when you're discussing personal physicians, that you do not use their name or initial (use "my doctor" or  "a friend's doctor"), unless it's in relationship to something they said in the media or a published paper.

That's it. I really don't have any other rules, other than don't spam my blog or phish for information.

I think the time is ripe for more meta-discussions that I don't see anyone having, and those are the discussions about discussions which get shut down before they even start.

My main question is: Have you been censored and what can we do about censorship on patient forums?

If you are a Lyme disease patient and you want to discuss being censored or being banned online yourself, please leave a comment. You can still be Anonymous or use a username - either way,  I'll post your comment after it clears my spam filter.

If you are a Lyme disease patient and you want to bring up the discussion of censorship in general - especially in what changes you'd like to see in the way discussions online are handled - please drop me a comment.

Let's open dialog up, and see what happens.

This work by Camp Other is licensed under a Creative Commons
Attribution-NonCommercial-ShareAlike 3.0 Unported License.

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0 Quiz Time: Logo Answer Key

So though I know many of you viewed the new Camp Other logo, you didn't take up the challenge of commenting on the quiz post. So I have provided the stumped with an answer key - as long as this logo is in use, you can look here to find out who is in it and what odd touches I added...

I wonder what a party would be like if we had all these guys under one tent... Too bad that some of them are dead as of this writing - we'll never know. I would have liked to have been a fly on the wall of this tent if it were ever a reality. Anyway, below is a list of who is who - plus the three objects I mentioned in the last post about this logo.

1. Richard Feynman (1918-1988) was an American physicist who won the Nobel Prize in 1965 for "for fundamental work in quantum electrodynamics, with deep-ploughing consequences for the physics of elementary particles". Physicists and physics students will understand that more than anyone else. Outside of his Nobel prize, Feynman was memorable for his physics classes at Caltech, his work on The Manhattan Project, his testimony on the Space Shuttle Challenger disaster, for his skill as a drummer and artist, his interest in genetics, and for his attempts to visit formerly Soviet-controlled Tuva.
   
   One thing I really liked about Feynman: Feynman has been called the "Great Explainer". He gained a reputation for taking great care when giving explanations to his students and for making it a moral duty to make the topic accessible. His guiding principle was that if a topic could not be explained in a freshman lecture, it was not yet fully understood.
   
   
2. Bill Nye (The Science Guy) is a science educator, comedian, television host, and mechanical engineer. He is best known as the host of Disney's science education show, Bill Nye the Science Guy (1993-1997). He began his career at Boeing and developed a hydraulic pressure resonance suppressor still used in the 747.
   
   
   
   
   He went on to do aerospace consulting, was a comedian on the show, Seattle, Almost Live!, created The Eyes of Nye PBS science show for adults, has been a lifeline expert on Who Wants To Be A Millionaire, and had clips of his show in the popular (over 2 million hits!) Symphony of Science series.
   
   See Bill Nye, Carl Sagan, and Richard Feynman clips in this Symphony of Science mashup, We Are All Connected:
   
   
   
3. Susumu Tonegawa 利根川 進 is a Japanese scientist who won the Nobel Prize for Physiology or Medicine in 1987 for his discovery of the genetic mechanism that produces antibody diversity. Tonegawa is best known for elucidating the genetic mechanism in the adaptive immune system. To achieve the diversity of antibodies needed to protect against any type of antigen, the immune system would require millions of genes coding for different antibodies, if each antibody was encoded by one gene. Instead, as Tonegawa showed in a landmark series of experiments beginning in 1976, genetic material can rearrange itself to form the vast array of available antibodies.
   
   
4. Wayne Rogers (as "Trapper John McIntyre") is an actor who is best-known for playing "Trapper John", a doctor on M*A*S*H who was tent mates with Alan Alda's "Hawkeye Pierce". Many years ago, Wayne was asked to sign a contract agreeing not to engage in "objectionable behavior" while working on the set of the show or otherwise risk being fired, and refused to unless the directors and production company were held to the same standard.
   
   
5. Barbara McClintock (1902-1992) was the 1983 Nobel Laureate in Physiology or Medicine, was an American scientist and one of the world's most distinguished cytogeneticists. McClintock received her PhD in botany from Cornell University in 1927, where she was a leader in the development of maize cytogenetics. Her work was groundbreaking: she developed the technique for visualizing maize chromosomes and used microscopic analysis to demonstrate many fundamental genetic ideas, including genetic recombination by crossing-over during meiosis—a mechanism by which chromosomes exchange information. She produced the first genetic map for maize, linking regions of the chromosome with physical traits, and demonstrated the role of the telomere and centromere, regions of the chromosome that are important in the conservation of genetic information.
   
   
6. Carl Sagan (1934-1996) was an American astronomer, astrophysicist, cosmologist, author and science popularizer and science communicator in the space and natural sciences.
   
   
   
   During his lifetime, he published more than 600 scientific papers and popular articles and was author, co-author, or editor of more than 20 books. In his works, he advocated skeptical inquiry and the scientific method. He pioneered exobiology and promoted the Search for Extra-Terrestrial Intelligence (SETI).
   
   Sagan became world-famous for his popular science books and for the award-winning 1980 television series Cosmos: A Personal Voyage, which he narrated and co-wrote. A book to accompany the program was also published. Sagan also wrote the novel Contact, the basis for the 1997 film of the same name.
   
   
7. Elizabeth Blackburn is an Australian-born American biological researcher at the University of California, San Francisco, who studies the telomere, a structure at the end of chromosomes that protects the chromosome. Blackburn co-discovered telomerase, the enzyme that replenishes the telomere. For this work, she was awarded the 2009 Nobel Prize in Physiology or Medicine, sharing it with Carol W. Greider and Jack W. Szostak. She also worked in medical ethics, and was controversially dismissed from the President's Council on Bioethics.
   
   
8. Alan Alda (as "Hawkeye Pierce")  is an American actor, director and screenwriter. A five-time Emmy Award and six-time Golden Globe Award winner, he is best known for his role as Hawkeye Pierce in the TV series M*A*S*H. During the 1970s and 1980s, he was viewed as the archetypal sympathetic male, though in recent years, he has appeared in roles that counter that image. He is currently a Visiting Professor at the Stony Brook University School of Journalism.
   
   Alda's prominence in the enormously successful M*A*S*H gave him a platform to speak out on political topics, and he has been a strong and vocal supporter of women's rights and the feminist movement. He co-chaired, with former First Lady Betty Ford, the ERA Countdown campaign. Alda has also played Nobel Prize-winning physicist Richard Feynman in the play QED, which has only one other character. Although Peter Parnell wrote the play, Alda both produced and inspired it. Beginning in 2004, Alda was a regular cast member on the NBC program The West Wing, portraying Republican U.S. Senator and presidential candidate Arnold Vinick, until the show's conclusion in May 2006. It was not until 2004, after a long distinguished acting career, that Alda received his first Academy Award nomination, for his role in The Aviator.
   
   In 2005, Alda published his first round of memoirs, Never Have Your Dog Stuffed: and Other Things I've Learned. Among other stories, he recalls his intestines becoming strangulated while on location in Chile for his PBS show Scientific American Frontiers, during which he mildly surprised a young doctor with his understanding of medical procedures, which he had learned from M*A*S*H.
   
   
9. Ada E. Yonath עדה יונת ( pronounced [ˈada joˈnat]) is an Israeli crystallographer best known for her pioneering work on the structure of the ribosome. She is the current director of the Helen and Milton A. Kimmelman Center for Biomolecular Structure and Assembly of the Weizmann Institute of Science. In 2009, she received the Nobel Prize in Chemistry along with Venkatraman Ramakrishnan and Thomas A. Steitz for her studies on the structure and function of the ribosome, becoming the first Israeli woman to win the Nobel Prize out of nine Israeli Nobel laureates, the first woman from the Middle East to win a Nobel prize in the sciences, and the first woman in 45 years to win the Nobel Prize for Chemistry. However, she said herself that there was nothing special about a woman winning the Prize.
   
   Yonath focuses on the mechanisms underlying protein biosynthesis, by ribosomal crystallography, a research line she pioneered over twenty years ago despite considerable skepticism of the international scientific community. Ribosomes translate RNA into protein and because they have slightly different structures in microbes, when compared to eukaryotes, such as human cells, they are often a target for antibiotics.
   
   Additionally, Yonath elucidated the modes of action of over twenty different antibiotics targeting the ribosome, illuminated mechanisms of drug resistance and synergism, deciphered the structural basis for antibiotic selectivity and showed how it plays a key role in clinical usefulness and therapeutic effectiveness, thus paving the way for structure-based drug design.
   

The three objects/items I mentioned, from left to right:

1. Behind Richard Feynman is a sepia-toned photograph of Lida Mattman near her microscope on the tent wall.
   
   Lida Mattman (1912-2008) graduated with a M.S. in Virology from the University of Kansas and a Ph.D. in Immunology from Yale University. Mattman has taught Immunology, Microbiology, Bacteriology, Virology and Pathology. She worked for 35 years in these fields at various schools and institutions including Harvard University, Howard Hughes Institute, Oakland University and Wayne State University. Mattman developed a new method for culturing B. burgdorferi from patients with chronic Lyme disease. In 1998 she was nominated for the Nobel Prize in Medicine. She authored the book Cell Wall Deficient Forms: Stealth Pathogens.
   
   
2. On the floor in front of Bill Nye is an oscilloscope modified so one can play Tetris on it. Yes, it is real!:
   
   
   
3. On Alan Alda's head is a yellow finch that is one of the finches Charles Darwin identified in the Galapagos Islands.

I was hoping for more participation in comments, and I intend to quiz you in future posts about "what is in this picture" - however, I warn you that those quizzes may prove to be more challenging than this one!

Carl Sagan should have been the obvious one to answer even if you wrote nothing else, since I have mentioned him a number of times on this blog. Since it's The Swamp from M*A*S*H, I thought at least some of the old school would get Alan Alda and Wayne Rogers.

Well, you'll have another chance in the future to participate in other game posts - provided I am well enough to keep writing. Hope you learned something interesting from this one!

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0 Quiz Time! Who's in the logo?

Edit: I'm really surprised you folks are quiet on this one... I'm going to delay releasing my next post and give this another 24 hours for you to guess who's in the new Camp Other logo. 

Okay, the old logo just wasn't working for me... This one might need a little tweaking, but I think it's mostly the right idea for this blog.

Say goodbye to the old beach tent...

And hello to the new logo above.

So... just for fun: Who is in the new logo?

I'm going to leave this up for 24 hours and see how many of you can identify any or all of the people in The Swamp (that should be a clue, right there - I can't imagine that you won't get at least three right off the bat).

Extra bonus points for noting three items not normally found in The Swap which were added to this image.

On your marks... get set... GO!

HAVE FUN!

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0 Administrivia: Site redesign

Just a quick heads-up to everyone reading:

If the page layout, colors, and design seem to be mutating like an amoeba on acid during the course of the day next day or two, please do not be alarmed.

I am in the middle of changing the site's appearance and gadgets, after getting some feedback from a few users.

I'm always more concerned about getting information out there than I am about the site's design, but the feedback was useful and was about usability as much as it was about window-dressing.  If these changes make it a more enjoyable experience for them and others then I'm willing to try the changes and see how it goes.

As for updating content on the site, I'm working on more topical posts but my writing has been slowed down by being ill lately. Tweaking the design takes less effort when ill than writing does, as it turns out.

I hope that you, my "patient minions" (see right sidebar), will be patient. More posts coming during this week unless I happen to feel worse than I am now.

Thanks!

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0 Administrivia: New page and updates

Just a brief note for those revisiting or who are new to my site:

1) I've added a new page about the middle ground which contains transcribed notes on Pamela Weintraub during the October 2010 IOM  Q & A session. That page is: The Middle

2) I've updated the FAQ, too.

That is all.

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