Saturday, January 27, 2007

The Demise of Wikipedia's Migraine and Headache Pages

It's sad, really. The Wikipedia pages about Migraine disease and various forms of headaches such as tension-type and cluster headaches were, at one time, excellent resources. What they've become is just more flotsam on a sea of questionable Web content.

Wikipedia is a good concept -- a sort of online encyclopedia that anyone can edit. And therein lies the problem. Anyone can edit. The "policing" of editing isn't well monitored by anyone other than those doing the editing. On the Migraine and headache pages, some editors have become quite territorial. God forbid that you add an external link or make a minor edit if you don't have a long history of edits to your name. God forbid that you be new or an actual expert in the field with limited time. The more territorial (and bitch) of the editors will rip you to shreds on the "Talk" pages or worse -- accuse you of spamming and plaster it all over the talk pages to ruin your reputation.

Point in case: I noticed that author, advocate, and lay expert Teri Robert has a modest list of edits to these pages as well as having created the Hemicrania continua page. At some point, she added a link to some content on That offended a nurse who edits under the ID THB, who proceded to post to more than one page, "Teri Robert spamming book." Even when Teri apologized to this ahem, person, she continued to quite rudely berate Teri. Now, a civil human being would have accepted her apology and offered to help her work better within the poory communicated "rules." Of course, a civil human being wouldn't have been so pissy about it in the first place.

As a cluster headache sufferer, I took a look at that page today. A new statement has been added, "Sluder's neuralgia(syndrome) and cluster pain can often be temporarily stopped with nasal lidocaine spray. If successful, outpatient nasal septoplasty and splinting can resolve the condition." There is no citation for this asertion of fact. Where is THB now? It will be interesting to see if anyone does add a citation for this supposed fact as I've talked with two headache specialists about it. The more polite of their responses was, "That's BS if ever I've seen it. There's just no way that treatment could "resolve" the condition."

I feel rather sorry for the many people who have earnestly and diligently worked on Wikipedia pages. The way Wikipedia is run moves it from my list of "dependable content" to "questionable content to be read for amusement value only."

Oh, and to THB, I'm really sorry that you're so unhappy that you take it out on other people the way you do. Miserable circumstances don't have to make you act like a miserable person. That's a choice.


Friday, January 19, 2007

Looking for Migraine & Headache Writer Teri Robert?

OK, I'm biased. Virtually everything I know about Migraine disease I learned from Teri Robert. Reading her articles taught me that Migraines are a disease; that I have not only the right, but the responsibility to ask my doctors questions AND get some answers, that I do not have to live with nearly daily Migraines. She's the reason I capitalize the word Migraine. So, I'm biased. Teri is my hero. I want to grow up to be Teri Robert. (Well, not literally. She's only a few years older than I am, but you get the point.)

I first discovered Teri's writings and Herculean patient advocacy efforts on Last weekend, I was dismayed to find her picture gone from her site there and "Apply Now" where her name had been. Whatever did to make her decide to leave or didn't do to entice her to stay, it's their loss. I, for one, won't be returning to their site or their forum since I won't find her there.

Fortunately for all of us, a quick email to Teri revealed that she is well and that after she resigned from, she went to MyMigraineConnection, which is part of the HealthCentral Network. She told me she'll be doing mainly the same things there that she did at -- "writing articles and other content, blogging, and hanging out on the forum." Yesterday, "Teri Robert's Blog" had a new entry - "New Year's Resolutions for Migraine Doctors."

So, if anyone is looking for Teri, now you know where to look! :-)