Using the words "headache" and "Migraine" Interchangeably. Bad, Bad, Bad.

I find myself exceedingly sad today. Last week, I received an email from a PR firm representing one of our major headache and Migraine disease nonprofit organizations. The email asked me to share information from a recent survey done by the nonprofit organization.

My mood went up at first -- Yes! More good information to share. Then my mood plummeted as I continued. What? This MAJOR organization, whose members and staff should know better, used the term "headache" through their entire release. Then, they added a paragraph about Migraine at the end. No way could I promote the information from their survey. There was no way to tell how many of the survey participants were responding based on their headaches and how many were responding based on Migraines.

I responded to the PR firm email, expressing my concerns and saying I could not promote the survey and its results. The next day, I received an email from the director of the nonprofit. In part, it read...

...The (name of nonprofit removed) uses the terms interchangeably as often those who have migraine often don't use that specific term for their headache. Sick headache and stress headache are frequently used to describe migraine. Many migraineurs think that if they don't have nausea/vomiting and/or sensitivity to light/sound, they don't have migraine, when they actually do. These people may still take time to read the information the (name of nonprofit removed) provides when the more generic term of headache is used...

What? I can't believe this was said. This organization should be educating people, not feeding the lack of knowledge and understanding. Maybe they don't think it's worth the effort to teach people?

I looked back at the material that was sent to me. It could easily have been rewritten to be enlightening rather than pandering to unawareness. All it would have taken would have been to replace the word "headache" with the phrase "headache and Migraine." It would be nothing to start adding a paragraph to their releases that explains that people are mistaking Migraines for headaches.

It just seems to me that this director is talking in circles in the email to me. It seems that this person is saying it's better to pander to ignorance rather than promoting education and awareness.

I'm not going to name the organization. It's just not worth it to start a battle with a director who is so sure that their organization is right.

Allow me to close with the last sentence of the reply I sent to this director:

If we can't count on the leaders in the field to push for progress, on whom can we count?

Sadly,
Abi

Interesting Book Review Site

Living Well with Migraine Disease and Headaches: What Your Doctor Doesn't Tell You...That You Need to Know by Teri Robert

My review

rating: 5 of 5 stars
The most helpful migraine and headache book to date. Ms. Robert tells it like it is and provides more information than any doctor has time to provide. Based on solid science as well as personal experience -- both her own and that of case studies.



Offers not only information, but hope and inspiration.


View all my reviews.

Headache and Migraine Disease Blog Carnival for May

Diana Lee has posted May's Headaches and Migraine Disease Blog Carnival on Somebody Heal Me. This month -- Migraines & Exercise: How do you stay active?

Generally speaking, a blog carnival is a collection of links to a variety of a blogs on a central topic. The Headache & Migraine Disease Blog Carnival has been created to provide both headache and migraine disease patients and people who blog about headache disorders with unique opportunities to share ideas on topics of particular interest and importance to us. Visit the link to this month's carnival for a collection of informative entries on how other Migraineurs fit exercise into their lives.

Visit this month's blog carnival!

Namaste,
Abi

Migraine - 2008 Migraine and Headache Poetry Contest Winners!

Each year, writer and patient advocate Teri Robert conducts the Putting Our Heads Together Poetry Contest to bring together people with AND without Migraine disease and headaches to share our thoughts and expressions. This contest is held in April, National Poetry Month.

I just read this year's winning poems and many of the other poems entered. Wow! The poems submitted to this contest get better and better every year. I'm glad I'm not one of the judges. There's just no way I could choose!

When you have a bit of time, go read the wonderful poetry! You won't be disappointed!

Spring. Love it? Hate it? Migraines love it!

What a horrendous couple of weeks! In so many ways, I love spring with it's cherry blossoms, birds returning, flowers blooming! But, spring also seems to bring me more Migraines than any other time of year with wildly fluctuating temperatures and weather fronts coming through. UGH!

Of course, the increase in Migraines is at least partly my own fault. Once warmer weather arrives, I tend to curl up on my porch swing and sit there late into the night. That means going to bed later, getting less sleep. So, add that to the mercurial weather, and I'm doomed.

I can't decide if I love or hate spring. The one thing I'm sure of? Migraines love it!

Namaste,
Abi

Migraine Poetry - Express Yourself and Raise Awareness

Author and Patient Advocate Teri Robert knows the pain migraine sufferers face each day – she’s been experiencing headaches and migraine attacks herself since childhood. Finding writing therapeutic and wanting to further help those in the migraine community, Robert, in conjunction with The HealthCentral Network (www.HealthCentral.com), are hosting the “Putting Our Heads Together” Poetry Contest 2008.

Now in its seventh year, the contest encourages sufferers to find creative ways to express their pain. “Putting Our Heads Together” is free and will be published on HealthCentral’s MyMigraineConnection.com and Roberts’ HelpForHeadaches.com.

Entries will be judged by MAGNUM, the National Migraine Association (www.migraines.org) and will be collected until April 21. Winners will be announced on April 30, in recognition of National Poetry Month. “This contest started in 2001, and the work submitted has been amazing. Writing can be very therapeutic, as can reading what others have written,” said Robert, who currently educates and supports patients as Lead Expert for the MyMigraineConnection.com community. “Migraine disease and headaches can impact our lives more than many people could ever imagine.” “People coping with migraine disease continue to reach out to one another, forming incredibly supportive communities online,” said Chris Schroeder, CEO and President of The HealthCentral Network. “It’s an honor to provide the forum where users can creatively tell their stories and inspire others.”

Migraine disease affects nearly 36 million people in the United States alone, and at least 80% of the world's population will be affected by tension-type headaches at some time in their lives. Headache disorders cause more than 1 percent of all disability and 9 percent of all lost labor in the U.S. every year.

More information and the online entry instructions can be found on MyMigraineConnection at www.healthcentral.com/migraine/poetry-contest.html.

Why not join in the fun and enter? The deadline for entries is Monday, April 21.

Shalom,
Abi

April Headache Blog Carnival - Strategies for Coping with Migraines

Generally speaking, a blog carnival is a collection of links to a variety of a blogs on a central topic. The Headache & Migraine Disease Blog Carnival has been created to provide both headache and migraine disease patients and people who blog about headache disorders with unique opportunities to share ideas on topics of particular interest and importance to us.

Visit this month's carnival for a collection of informative entries on basic strategies for coping with migraines and headaches.

Migraine Research - Please email your Senator TODAY!

We need and deserve better treatments, but we're unlikely to get them until the NIH increases the funding for basic Migraine and headache research.

Each of us CAN make a difference. Please read the letter below and follow the link to email your Senators NOW.

Thanks!

Shalom,
Abi

Please Email Your Senator Today! Our efforts last month to urge members of the US House of Representatives to support increases in NIH funding for research on headache disorders were highly successful. Twelve Representatives signed the Obey/Walsh letter. This is an outstanding result for the first mobilization of our numbers, and we are optimistic that it will be enough to have our message appended to the House appropriations bill. It is now time to contact your US Senators for the same purpose. Unfortunately our window of opportunity is only narrowly open. The letter with Senators' signatures must be submitted by today, April 4th. Please take just 5 minutes RIGHT NOW to go directly to http://capwiz.com/headacheadvocacy/issues/alert/?alertid=11231066&PROCESS=Take+Action and send your message to your two US Senators Please forward this email right away to anyone else concerned about the inadequate state of care for patients with headache disorders. Only with increased research will new effective treatments for headache disorders become available. And only with your help will such research activities increase to levels appropriate to the huge scale of this problem. The larger our voice, the greater will be our impact. Thanks again for your efforts. Robert Shapiro, MD, PhD William Young, MD, Teri Robert, PhD Brad Klein, MD, MBA

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