Friday, November 30, 2012

0 Late November Newsletter From Camp Other

There are a few announcements I'd like to make today...

For those of you who are here for the first time, via Twitter: Welcome to Camp Other blog. I'm glad to see you here, and I look forward to having interesting discussions with you both here and on Twitter.

Whether you are new to this blog or a returning visitor, the following announcements may help you make sense of what's been happening here at Camp Other blog:

An Effort to Change Writing Style and Reporting

Joining Twitter is a recent move I made in the past couple of weeks in order to pick up more great writing on science and links to posts from science bloggers.

In some ways, this is great because I'm learning more, and I recommend following those I follow because there are a lot of interesting articles out there. But in other ways, this is a humbling experience because there are so many good writers out there - and once I've read them, I can't help but notice there is room for improvement here.

I'm not a professional blogger and do what I do for my own education and share it with others. I never attempted to make this blog a profitable enterprise because I felt that the information was something everyone should have and I wanted to remain neutral by not being funded by anyone who could be perceived as having editorial influence over my posts. This is how it has been - and this is how I want this site to continue - even if someday I manage to become a professional writer in the future.

Open source or not, after reading more science blogs and articles, I can only see that learning from those already in the trenches longer than I have been will teach me how to be a better blogger for everyone.

One thing I am already noticing, unfortunately, is that blogs which are more accessible than mine in some way - those which reach a wider audience, or those which are high volume and have short,  focused posts - are blogs which are going to be difficult for me to emulate.

Reason being: I am suffering from a medical condition which affects my cognitive abilities and energy. My ability to either stay focused on one topic or publish a brief post is challenged due to having chronic fatigue and trouble focusing.

Ironically, having more fatigue doesn't translate into shorter posts - it comes coupled with altered executive function in my brain - so I can ramble on and write a long post yet have trouble getting to the point.

I'd like to make an effort to change this, but where to begin? I could use some advice as to how to overcome these stumbling blocks and make my blog not only more easily readable for a wider audience but also optimize and work with the cognitive abilities I do have.

REMOVED: The Poll On What Causes Persisting Symptoms of Lyme Disease

For almost a year, a blogspot poll widget was on the upper lefthand corner of this blog. It asked readers to select among a number of choices as to the cause for persisting symptoms in patients after initial treatment of Lyme disease.

In recent weeks I have been monitoring the output of this widget and decided in all fairness it needed to be removed because votes were not being recorded and displayed accurately: One week I would see a score of over 110 votes, and the following week it would dip down to 93 - only to waver between 97 and 92 in the following weeks.

Any poll should be gaining and not losing the total number of votes. So it got voted off the Camp Other island, and I won't be using that widget again. Other online sources reported similar issues with this widget as well, and had I known in advance it was a problem, I would have used a different poll widget.

Despite this setback, know that each choice and the most recent results will be discussed in a future post.

A sneak preview: A little over 90% of readers who responded to the poll thought that Lyme disease can be a chronic and persisting infection after initial treatment - while a little over 30% thought persisting symptoms that occur after initial treatment are caused by an autoimmune condition.

The Challenge Of Being Both A Patient And Researcher: Bias

I placed a request on Twitter earlier today asking followers for any information on scientists who study the disease they themselves have - and in particular, blog about it.

I'm hoping to ask them a few questions about how they handle the issue of bias, and how they sort out other research they read about their own condition in order to know which leads to follow, which leads are cold, and which leads are questionable.

One of the walls I find myself banging against as I continue to write this blog is my concern over the issue of bias: Can a patient research their own disease and its causes and treatment without bias, or is there always going to be a certain amount of bias in what one reads and writes about because one is a patient?

Not sure I can sort out all the issues around this, but I wanted to bring up the question because I think it is an important one. I'd like to explore this more.

Sick, Symptomatic, And Struggling

I mention it only in passing because I am still not posting as frequently as I hoped:

I'm not doing so well lately. I suspect the symptoms I'm having are due to a new condition and I am in the middle of getting referrals to specialists to help sort it all out. In the meantime, hopefully I can find a way to continue to do research and blog more regularly.

And there is a certain level of frustration I'm experiencing here which is difficult to put into words, but it basically boils down to, "I'm sick and tired of being sick and tired, and sick of being poked, prodded, biopsied, scanned, bled, x-rayed, ultra-sounded, and analyzed in general."

I am not a number... but I have felt like one. (I'd rather say, "I am not a number, I'm a free man" - but I'm not sure how many of you reading along would catch that ref.)

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