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

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 About.com. Last weekend, I was dismayed to find her picture gone from her site there and "Apply Now" where her name had been. Whatever About.com 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 About.com, 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 About.com -- "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! :-)

Shalom,
Abi

A good question for Migraineurs...

What could someone else give you to make your life with headaches or Migraines easier?

What gift would you give yourself?

These are the questions Teri Robert asked on her site at About.com. They're great questions, and she has some wonderful suggestions.

Check it out!

Shalom,
Abi

People who blog about Migraine disease...

People who blog about Migraine disease and speak as if they're an authority offering educational information should do at least a bit of research before blogging. Incorrect information can be highly detrimental, confusing more people than it helps.

This morning, I ran across a blog entry entitled, "Migraine headaches come in two varieties." Not only does this person think that Migraine with Aura and Migraine without Aura are the only two "varieties" of Migraine, he or she still thinks that "Rapid changes in the flow of blood to the head" are the cause of the Migraine. Researchers have now shown that genetics and overactive neurons in the brains of Migraineurs are the cause of the disease, and that the blood flow changes are part of the Migrainous process, i.e. more a symptom than the cause.

Please, if you're reading blogs or searching the Internet for information about Migraine disease, know who wrote the information you're reading and that they actually know what they're talking about.

Leading patient advocate Teri Robert does know what she's talking about. You can count on anything she writes to be well researched and accurate. If you want to know about the types of Migraines or the cause of Migraine, visit one of her sites:

• Help for Headaches and Migraine
• MyMigraineConnection.com
  

Learning about this disease is critical. Let's learn what's correct.

Shalom,
Abi

Why do people fall for this stuff?

A Google News Alert sent me to check out another blogger's entry, "Easy Steps to Become Migraine Headache Free" this afternoon. Groan. Here we go again. Someone else writing that stress is the Big Bad Wolfe and that controlling our DISEASE is easy.

According to Javier Fuller, who wrote this little ditty, controlling "Migraine Headaches" is as easy as chiropractic adjustments, biofeedback, dietary control, and finally, "think about other pleasant ideas, do physical and breathing exercises or go for a brisk walk and ease your tension." According to fuller, "Following the above disclosed measures, you will soon find yourself migraine free."

Oh, yeah! NOT. I've done all of those things. I walk daily, meditate, do all the breathing exercises. I've tried chiropractic adjustments. Did nothing for me. I've done biofeedback. I employ dietary control. I'm not Migraine-free.

I did some checking to see who Javier Fuller is. He writes articles posted to a site called EzineArticles.com. His bio says, "I like reading and writing." It's a shame he doesn't like researching what he writes. He writes on other issues too, life-changingly important issues such as "Wanna Buy Cheap LCD Television?" and "Choose Wedding Songs To Your Heart's Delight." Enough said.

Shalom,
Abi

MAGNUM, My Site of the Day

If you're a Migraineur or know someone who is, this is a web site you need to visit and bookmark! There are other organizations for headaches and Migraines, but MAGNUM is the only nonprofit organization devoted specifically to Migraine DISEASE.

MAGNUM was founded by Michael John Coleman, who has suffered with this disease since he was a child. The organization has a superlative staff and board of directors including my mentor Teri Robert. The MAGNUM site is one you can count on for accurate information from trusted professionals in the field.

From the MAGNUM site:

MAGNUM: Migraine Awareness Group: A National Understanding for Migraineurs, was created to bring public awareness utilizing the electronic, print and artistic mediums, to the fact that Migraine is a true biologic neurological disease, to assist Migraine sufferers, their families, and coworkers, and to help improve the quality of life of Migraine sufferers worldwide.

MAGNUM also has an excellent Migraine Blog. This is another site to bookmark!

On a related note, if you have a few extra $, a donation to MAGNUM helps ALL Migraineurs. A donation is also a great Christmas gift for Migraineurs you know. MAGNUM is a 501(c)(3) charity, so donations are tax-deductible.

Shalom,
Abi

Wikipedia, a great concept runied by jerks

I used to love Wikipedia. Even when idiots messed up the "articles," someone would come along and fix them, and I always found something interesting and maybe even unusual about it.

Wikipedia was such a lofty concept — articles that anyone could contribute to, collaboration in fine form indeed. It seemed to me to be a concept and site that had a brilliant future.

The wiki concept is in the process of living up to its potential, but not — I fear — on Wikipedia. The problem is that there is too little oversight and control on Wikipedia, and people just can't help themselves. When nobody is watching the store, someone always has to come along and be a jerk.

I'm not going to mention names because I don't want to embarrass the friend whose experience I'm writing about. Let's just call my friend Mary Jane. Mary Jane is probably the kindest, gentlest person I know. She has a web site that has a few Google ads on it, but I doubt that they bring in enough to even cover the expenses of keeping her site running. She also works for an online information service, but I know she doesn't make much at it, and what she does make is spent helping people who have less than she does.

When I talked to Mary Jane earlier today, she was nearly in tears. She had been working on several articles on Wikipedia, all of them interrelated. Someone had edited a few of the pages and removed links to both of her sites. Not only that, but this person (who had not contributed to those pages in recent history) went on to attack her on the "talk pages" for those articles, calling her a spammer. Excuse me, but what a bitch! I went to Wikipedia and read the exchange for myself. The Bitch said that Mary Jane had been warned about spamming before. Not true. I read all the appropriate pages to see for myself. Mary Jane had indeed had some conversations with other people about links, but there was absolutely no mention of the links that were removed today. None.

So what ever happened to common courtesy? I'm proud of Mary Jane that she had the self control and professionalism not to tell the Bitch to where to get off. I don't think I could or would have had that much self control. But then, Mary Jane is a class act. The Bitch obviously isn't.

Yes, it was great concept. Now it's just a huge public failure. Not just for this reason, but for many, not the least of which is the plagiarism which has run rampant there for too long and now the virus attack on the German Wikipedia. Sad, but a failure on too many levels to list.

Yes, Wikipedia was a great concept. But then again, so was the Roman Empire.

Shalom,
Abi

Great site about Migraine with aura!

The Migraine Aura Foundation has a marvelous web site. One of the most fascinating sections there is their section of Migraine Art.

If you've never visited this site, please do. You won't be disappointed.

Shalom,
Abi