Migraine Truth: Migraine Pearls or Onions?

When it comes to Migraine truth, nobody tells it better than patient advocate Teri Robert. On her blog at www.PuttingOurHeadsTogether.com, she’s started a new series that I absolutely love – Migraine Pearls or Onions?

She started this feature in late January, and it’s quickly become one I watch for. Here are her “Pearls” and “Onions” so far:

• Migraine Pearls or Onions? 1/20/11
  Onion: The article “Headaches, Migraines Easily Handled,” by Debbie Nicholson
  Pearl: Her Facebook friends who joined her in posting comments on that article.
• Migraine Pearls or Onions? 1/26/11
  Pearl: The Migraine Research Foundation
  Onion: the e-book The Migraine Relief Guide
• Migraine Pearls on Onions? 2/7/11
  Pearl: The American Headache Society
  Onion: The article “Headache and Migraine Migraine Medication Types,” by Cricket Webber at BellaOnline
• Migraine Pearls or Onions? 2/15/11
  Pearl: The National Headache Foundation
  Onion: A jerk at the pharmacy.
• Migraine Pearls or Onions 2/23/11
  Pearl: Go Red for Women, the American Heart Association
  Onion: Dr. Andrew Jones of the Women’s Health Institute

Go, Teri!

‘Nuff said.

Best,
Arabella ♥

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Migraine and Stigma: Here’s Some Truth!

For those of you who experience Migraines, are any of you NOT affected by the stigma attacked to Migraine disease? I doubt it. The stigma is pervasive, even in today’s supposedly better educated and informed society.

We get it at work, at school, even at home and at church.

Now there’s research showing how that stigma affects us. It’s pretty startling, and it’s pretty sad. A new Migraine podcast posted today on www.MigraineCast.com is part one of two about Migraine and stigma. This podcast has two Migraine specialists who conducted the research and are willing to speak openly and honestly about stigma.

For some truth about Migraine and stigma, check out Migraine and Stigma, Part 1, on MigraineCast.

Best,
Arabella ♥

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Truth: Migraine Research Is Sorely Needed

Today I’m going to take a break from exposing the bad side of Migraine information on the internet to discuss a truth. More Migraine research is sorely needed. Anyone reading this probably already knows that. Another truth is that a major factor holding back Migraine research is funding for that research.

The Alliance for Headache Disorders Advocacy (AHDA) has been working to get the amount of funding from the National Institutes of Health (NIH) increased. They have some sobering statistics about Migraine and research funding:

• Headache disorders cause more than 1 percent of all disability and 9 percent of all lost labor in the US every year.
• Migraine alone is the 12th most disabling disorder in the US.
• Headache disorders are the most prevalent neurological disorders, affecting more than 90% of all Americans.
• The US annual direct and indirect economic costs of headache disorders exceed $31 billion.
• The NIH expended less than $10 million in 2006 towards all research on headache disorders, comprising less than 0.05 percent of its total budget. (Yes, that’s less than ½ of 1%.)

In their latest update, the AHDA reports progress in the form of appropriations bill report language and a planning meeting with the NIH. I congratulate them on that progress, but the increased research dollars aren’t a reality yet.

Yesterday, I can across an article by Teri Robert about the Migraine Research Foundation (MRF). A bit about the MRF:

The Migraine Research Foundation is committed to furthering the understanding of the causes and mechanisms of migraine, helping to develop improvements in treatment, and finding the cure. We believe that migraine research is very important and under-funded. As a result, MRF is actively seeking to provide seed money grants for projects that are important, achievable, and innovative that will ultimately lead to better treatment and quality of life for migraine sufferers.

The MRF is now accepting research proposals for their next round of grants. There’s more information about that in Migraine Research Foundation Announces New Request for Proposals.

The AHDA has worked tirelessly to increase the amount of research funding Migraine gets from the NIH. Their news of appropriations bill report language and the planning meeting with the NIH is indeed good news and very welcome. I don’t want to be negative, but given the state of the U.S. economy, I have to wonder how long it will be before that progress turns into real dollars available for Migraine research. I’m not an expert on this, but I suspect the length of time we wait for those dollars will be tied to the length of time it takes our economy to recover.

In the meantime, I’m glad to see other organizations stepping in to raise research funds. Along with the Migraine Research Foundation, there’s a new foundation started by the American Headache Society, the American Migraine Foundation.  Instead of waiting for the government to fund more research, maybe we need to put more emphasis on the MRF and AMF. Maybe, when we have a few dollars to spare, we need to donate to these foundations. It’s something to think about.

Best,
Arabella ♥

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The Truth About Migraine Treatments

Since this blog is for clearing up misconceptions and exposing misinformation, fake claims of cures, and scams, there are times when we need to take a good look at the truth. This is one of those times.

Do you take daily medications to prevent Migraines or headaches? If so, you’re taking medications developed for other conditions. Writer and advocate Teri Robert calls these “hand-me-down” drugs. The truth is that there is not one single solitary drug on the market that was developed for the prevention of Migraines and headaches. The truth is that the NIH doesn’t allocate research funding based on how many people are impacted or the severity of the impact. The truth is that each and every one of us has the opportunity — in fact, the responsibility – to help address this deplorable situation.

The Alliance for Headache Disorders Advocacy sent out this action alert yesterday:

Dear AHDA advocates -

The moment has arrived for you to contact your members of the US House of Representatives to take action for increasing National Institutes of Health (NIH) research on headache disorders.

Please go to the AHDA website as soon as possible to send strong but focused emails to your members of the House with just a few clicks.

Publicly funded research is the key to fundamental discoveries that accelerate drug development and expand the field of headache medicine. However, the NIH has never provided adequate funding for research on headache disorders. Currently, NIH expenditures for headache research are less than $13M annually, comprising less than 0.05% of the NIH budget. Meanwhile, headache disorders cost more than $31B in the US annually, including 9% of lost labor productivity, and result in more lost years of healthy life every year than epilepsy, multiple sclerosis, and ovarian cancer combined. As a consequence of insufficient research, only two innovative drugs have received FDA approval for migraine treatment in the past fifty years.

We are requesting that the US House and the Senate each include language that prioritizes research on headache disorders with the fiscal year 2010 appropriations bills for the NIH. At this particular time, we need our members of the House to sign a “Dear Colleague” letter that they received last week.

The AHDA website simplifies contacting your members of the House with the right message at the right time. You will also be able to add a brief personal statement to your members of the House if you wish.

The more emails that members of the House receive from constituents right now, the more likely they will act upon this issue. You CAN make a difference. Let Congress know you care now.

Also, right now please forward this email to everyone you know that also cares about someone suffering from migraine or other headache disorders.

Through collective advocacy we will improve the care for individuals with headache disorders. Thanks very much for your help.

Best regards to you all,
Robert Shapiro, MD, PhD; Burlington, Vermont
William Young, MD; Philadelphia, Pennsylvania
Brad Klein, MD, MBA; Philadelphia, Pennsylvania
Teri Robert, PhD; Washington, West Virginia

Please take a few minutes to go to the AHDA web site and send an email to your representative in the House. The truth is that any U.S. citizen who doesn’t take a few minutes to do this has absolutely no right to complain about the lack of effective treatments.

To send your email, quickly and easily, just CLICK HERE.

Best,
Arabella ♥

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Let’s Do Something About Needed Migraine Treatments!

It’s about time we had better Migraine treatments. Right? Right!

Most of the time, I post about Migraine sites and blogs that are disappointing, questionable, or wrong.  Today, I want to post about SOMETHING that’s wrong while posting about some sites and people who are great!

One of the reasons we don’t have better treatments is that the burden of research is left on the shoulders of the pharmaceutical companies. The National Institutes of Health (NIH) who should be funding the kind of research that reveals more about the causes of Migraine disease and how Migraines actually work in our brains, funds very, very little research for Migraine diseae or other headache disorders.

According to the Alliance for Headache Disorders Advocacy (the AHDA), the NIH expended less than $10 millong in 2006 towards all research on headache disorders, comprising less than one-half of one percent of their budget. The AHDA grew out of a 2007 event called Headache on the Hill. During Headache on the Hill, a group of doctors, researchers, and patient advocates traveled to Washington, DC, to speak to their congress members about NIH funding for Migraine and headache research.

Their work didn’t stop there. The AHDA kept at it, calling on everyone to send emails to their congressmen to get their backing. They also made it really easy! The emails were pre-written, and it only took a few minutes to go to their site and send them.

Later this month, Headache on the Hill will be going on again. As these dedicated people are preparing to brave this cold winter and travel to DC again, they’re also anticipating that they may need to enlist our help soon to send emails to congress again.

Soooooooooo, to get read for that, we all need to be sure we’re signed up to get their email alerts when our help is needed.

Let’s put our fingers where our mouths so often are and register for the AHDA mailing list. To do so, simply CLICK HERE.

Please, register for their mailing list AND ask all of your family and friends to do the same.

To keep up with all the AHDA is doing, as well as other important issues, keep an eye on MyMigraineConnection.com, where author and patient advocate Teri Robert always keeps us up-to-date.

Best,
Arabella♥

Images courtesy of Teri Robert and the Alliance for Headache Disorders Advocacy

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Migraines and Health Care

Today, we take a break from our “regularly scheduled programming” to remind everyone in the United States to vote tomorrow!

It’s no secret that health care in the US is in big trouble. Tomorrow, we have the opportunity to be heard by casting our votes.

So, get out and vote or spend the next four years in silence instead of moaning and groaning about government and our poor health care system.

Best Wishes,
Arabella
♥

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