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January 2013

January Headache and Migraine Blog Carnival - Submit Now

BlogCarnivalAware You're invited - to submit a blog entry for the January, 2013, Headache and Migraine Blog Carnival.

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

January's theme is New Year, New Chance to Adjust Your Migraine Treatment Strategies. The submission deadline is Friday, January 11, 2013. The carnival will be published on the Headache Disorders Blog Network on Monday, January 14.

Please email the link to your submission at terirobert@gmail.com by Friday, January 11 and include the following information:

  1. Your name as you would like it to appear in the carnival.
  2. The title of the blog post you're submitting.
  3. The url of the blog post you're submitting.
  4. The title of your blog.
  5. The url of your blog.

Do you have any questions? Please post a comment with any questions you may have.

Live well,

PurpleRibbonTiny
 

Puz-only-btn

Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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© Teri Robert, 2012
Last updated December 29, 2012.


2012 Holiday Gift for the Migraine and Headache Community

HolidayGiftPurpleGood morning to all of my extended Migraine and headache family! It doesn't seem possible that the holiday season has rolled around again, but here it is.

From everything I'm seeing and hearing, I can tell that many of you are having Migraine and headache problems, as am I. You know my very fondest wish is that we could all be instantly and miraculously cured. Since that's unlikely to happen any time soon, my next fondest wish is that each and every one of you find the right doctor to partner with and find successful treatment.

It's not something I've said much about, but my own Migraines have increased since other health issues forced me to cut back on some of my preventive medications last fall, and I'm back to chronic Migraines again. Last week, my Migraine specialist and I took the plunge, and he had the pleasure of adding 31 more little holes to my head in the form of Botox injections. We shall see how that does.

As has become my holiday tradition, I've made donations in honor of the Migraine and headache community as my holiday gift to you. This year, those donations went to The American Migraine Foundation and Clusterbusters.

HolidayGift2012

The American Migraine Foundation has just sent a letter about their plans for next year, and I'd like to share that letter with you:

In this holiday season, as migraine clinicians and researchers who have dedicated our careers to patients disabled with this disease, it's hard not to think of those who will suffer through the holidays and our obligation to contribute to alleviating this suffering. There is little doubt that among our holiday wishes as clinicians the top one is that this time next year we might be able to tell our patients that safer and dramatically more effective therapies are within reach, if not imminent.

While some interesting and encouraging advances were unveiled at this past year's Scientific Sessions in Los Angeles, the fact is that the triptans represent the only specific class of medication designed and approved for migraine in the last half-century. We appear to be, at best, several years away from having newer treatments. It is well known that federal funding for migraine research has been woefully inadequate, and industry cannot make up the slack.

We can do better . . . we must do better. We have the brain trust to move this field forward - what we lack is the funding to do so. So it falls to us in the voluntary health sector to make the right amount of noise in the right way to raise the national funding priority for migraine.

2013 promises to be an exciting year for AMF. We will launch a nationwide campaign to raise awareness and funding support for research. This campaign promises to mobilize the migraine community, public policymakers, well-known public figures, and American business to help us realize our goals. You will hear and see much more about this in the coming year and we hope you will be an active part of this unprecedented campaign. Our goals are to generate the highest possible national visibility for migraine and the need for more research funding -- and to inspire those who make funding decisions to give this disease the attention it deserves. If successful, we also hope to support the development of a national multicenter clinical registry and tissue bio-repository which has the promise of rapidly advance scientific and translational research. In addition, we will continue our quest to facilitate the development and success of academic headache centers around the United States. This will improve patient access to specialty care, facilitate the training of undergraduate and postgraduate medical trainees in the care of patients with disabling headache, and foster collaborative research efforts.

Because you are so integral to our success, we are asking for a donation to AMF. As we near the end of the year, your support can make the critical difference. You can do it by visiting our website at www.americanmigrainefoundation.org/Donation/default.aspx or by mailing us a check at the address below.

We thank you for your commitment to the field, our society, the foundation, and most importantly, your patients.

We wish you the very best throughout this holiday season and a healthy and prosperous 2013.

David W. Dodick, MD, FAHS
Chair, American Migraine Foundation

Elizabeth Loder, MD, MPH, FAHS
President, American Headache Society

http://amex.justgive.org/nonprofits/donate.jsp?ein=43-6058456

PS -- Did you know you can redeem your American Express Membership Rewards points for a donation? For every 1,000 points you redeem, we will receive $10.00. Select the Members Give banner at the link above.

Whatever holidays you may be observing, I hope they're joyful and that you have some pain-free time to enjoy them.

Live well,

PurpleRibbonTiny
 

Puz-only-btn

Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

Follow me on    or 

 

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© Teri Robert, 2012
Last updated December 20, 2012.


Migraines, Advocacy, and "Big Pharma"

MimeQuestioningPeople sometimes ask me why I work as a patient educator and advocate in the area of Migraine and other headache disorders. The answer is pretty simple...

Migraines nearly got the best of me for a while. They took over my life for quite some time, keeping me in bed most of the time for a couple of years. I had the resources and the support system to get the help I needed, to get specialist care and get them under relative control. When the opportunity came along to do this kind of work, I wanted to help other people who need help learning about their Migraines or other headache disorders, knowing what kind of doctor to see, building a support system, and more. On top of that, four of our grandchildren have Migraines, and I want their lives to be easier than mine has been.

Unfortunately, a cold, hard fact of life is that no matter who you are or what you do, there will be people who look for ulterior motives and biases in what you do, and patient advocates aren't exempt from that.

One of the issues we're often questioned about is whether we've received any compensation from "big pharma." Personally, I don't see that as an issue for a person with good ethical standards because that wouldn't impact what they said or did, even if it were related to a product from a company from whom they'd received compensation. HOWEVER, I understand that quite a few people would have doubts about an advocate who had received compensation from a pharmaceutical company, so I have never accepted any. Never. I have had a couple of consulting contracts with pharma companies that offered compensation, such as contracting with Allergan to be one of the judges for their Rewrite Your Day contest, but I declined it.

For the record, I am paid by Remedy Health Media for writing content, answering reader questions, and managing the forum on their Migraine site on the HealthCentral Network. I'm also paid by Migraine.com, owned by Health Union, for blogging for them. Remedy Health Media and Health Union are businesses. They provide the sites to users at no charge by selling advertising space on them, as do most commercial web sites.  All advertising is very clearly marked as advertising and distinct from site content.

That said, I have no hand in selling the advertising or collecting payment for it. I never even have any idea to whom the advertising is being sold or what ads will be running. Sometimes, the ads have nothing to do with Migraine. The ads aren't limited to "Big Pharma." Anyone can buy advertising. It just happens that most of the ads are for medications. Whatever the advertising may be it has no impact on what I write or say. There have, in fact, been times when I've written and published some pretty strong warnings and criticisms about something that was being advertised.

Also for the record, it's worth noting that I do quite a bit of work for which I'm not compensated financially, which is fine. Being a patient advocate isn't all about money. It's about helping people and teaching people to advocate for and help themselves. Like most other people, I do need a paying job, so I'm fortunate to be paid for part of my work as an advocate because that allows me to do it full-time. That income allows me to do two things:

  1. Make the financial contribution necessary to my family.
  2. Have funds available to do advocacy work for which I'm not compensated. Some of that work includes talking to Congress on behalf of Migraineurs during Headache on the Hill Events, traveling to the DC area to attend recent FDA meetings about their patient-focused drug development program, going to patient conferences such as the Clusterbusters conference and talking to them about advocating for themselves.

Why is this coming up now? This is coming up now because someone (and I'm not going to give that person the attention they seek by mentioning a name here) has been making public accusations that I accept "big pharma" money, "retarding Migraine science and misinforming sufferers." It's time to set the record straight, and that's what I've done here. Now you know.

Live well,

PurpleRibbonTiny
 

Puz-only-btn

Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

Follow me on    or 

 

Page copy protected against web site content infringement by Copyscape

© Teri Robert, 2012
Last updated December 19, 2012.