How much of your Migraine information do you get online? There's a prodigious amount of it, but that doesn't mean it's all accurate and unbiased. Online information can be bright, polished, and valuable - like a pearl - or it can be... well, rough and stinky - like an onion.
This feature, "Migraine Pearls or Onions?" highlights both the gleaming Migraine pearls I come acorss and the malodorous "Migraine Onions."
Today's Pearl goes to ACHE, the American Headache Society (AHS) Committee for Headache Education, for the Fred Sheftell, MD, Education Center. The goal of the Center is to provide patient education materials. The Center has grown significantly over the last year, adding a large amount of new content and instituting ACHE Tuesdays. On ACHE Tuesday, a new piece of patient education content is spotlighted, which not only brings attention to that piece of content, but also to the importance of patient education and the validation of educated patients. As more and more patients come to the realization that we can achieve better health and better health care by being better educated about our health, it's significant to see a professional society such as the AHS recognizing this as well.
Today's Onion goes to Curt Hendrix and the MigreLief blog for the blog entry Alice in Wonderland Type Migraines. Why? Because some of it, beginning with the title, is inaccurate.
There's no such diagnosis as Alice in Wonderland Type Migraine. Alice in Wonderland Syndrome (AIWS) is a type of Migraine Aura. People who experience AIWS have one of the forms of Migraine with Aura.
In his opening, Hendrix says:
Many of you who either suffer from chronic migraine headaches or have a close friend or loved one, who has them are familiar with the visual disturbances that can occur prior to the migraine pain, known as auras.
Another inaccuracy. You don't have to have chronic Migraine to experience aura. People with episodic Migraine can experience aura also. And I'm not even going to get into the inaccuracy of referring to Migraines as headaches.
Hendrix developed MigreLief, a dietary supplement for Migraine prevention. I know some people for whom it works pretty well; that's not what this is about. What this is about is if Hendrix is going to publish information on the Internet, targeted at Migraineurs, from whom he wants to make money, it should be accurate. I attempted to post a comment to that blog on July 15. It's still not posted, but awaiting moderation. Somehow, I doubt it will ever be approved.
To Mr. Hendrix, I would say, "Get it right or don't write it in the first place."
We need to learn about our Migraines and our treatments, and online information can be a valuable source. BUT, we need to take care that the information we choose is accurate and unbiased. Consider the source for the information you're reading, when it was written, and whether the author cites the sources for his or her information.
Do you have nominations for Migraine Pearls or Onions? If so, please post a comment!
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© Teri Robert, 2012
Last updated July 26, 2012.