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 HelpForHeadaches.com. 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.

Shalom,
Abi

4 comments:

deborah said...

Thankfully, I've never used that site to look anything up regarding a health issue. Thanks to you, I never will. It's really quite amazing where they get their so called information. don't you just sometimes wish a small dose of your symptoms on them at times like these. Then perhaps, you can administer their advice! Maybe then, someone can shove, ahem, sugically implant, something up her nose to alleviate her pain. She obviously has NO idea what she's talking about. I've not the slightest interest in anything she has to say. Good for Teri for holding back, and not slamming like we know she could.

Migraineur said...

Oh, yes, wikipedia. Geez, they lost me when I saw the reference to Hair Wash Headache on their migraine page. I was hoping they were going to talk about how some shampoos and conditioners have glutamate, and whether it could be absorbed through the skin and whether migraine sufferers should avoid them.

Instead, it's all about how women in India braid their hair while it's still wet and BAM! migraine.

Maybe I shouldn't be so dismissive, but if this is migraine, it certainly isn't the same resistant-to-prophylaxis, hard-to-treat disease I know. Geez, just leave your hair down until it's dry! I wish I had your problems.

It was like someone just needed to tell the world about Hair Wash Headache and didn't care if it had anything to do with migraine.

Abigail said...

Did you notice that they changed the Migraine page to say that Migraine is a disorder NOT a disease? Despite countless references from peer-reviewed journals, their dispute resolution people decided to pay more attention to dictionary entries. What a waste!

Jamila said...

Actually in regards to hair washing migraines, I actually searched "Hair Washing and Headaches" and Wikipedia appeared. I wish it said more information because I get migraines when I wash my hair. I don't think it has anything to do with braiding, because I don't and I still get a SEVERE, "don't whisper to me, do not turn the light on, the hum of the refridgerator is bothering me" HEADACHE! I would like to know if there is a way to prevent it other than having stinky hair.