Military Migraine

CINDY McCAIN, LONGTIME MIGRAINEUR, TO KEYNOTE ANNUAL MEETING OF THE INTERNATIONAL HEADACHE SOCIETY IN PHILY

Will Press For More Research Funding and More Public Awareness of the Pain and Suffering Endured By 36 Million American Migraine Sufferers

PHILADELPHIA--(THURSDAY SEPTEMBER 10th, 2009)—During last year’s election MAGNUM had the reported on some troubling facts regarding Republican Presidential candidate John McCain’s wife Cindy McCain and how she was being berated by members of the national press, even by the venerable New York Times for having succumbed to her Migraine disease among her other physically frailties.  We seem to have to come to a place in our culture where it is tolerated by some to be openly abusive to those with disabilities, as long as those disabilities do not confront the eye of the bystander.  Leaving those of us with non-visual diseases and conditions easy prey for those of weak moral character to make their ignorant attacks. Which is just an other reason why Migraine disease awareness is critical, so we are thrilled to tell you Cindy McCain is joining our fight tomorrow by opening a major Migraine medical event called IHS Congress.

 

To that fact, Cindy McCain, wife of U.S. Senator John McCain, will deliver the keynote address before a global audience of neurologists and Migraine treatment specialists attending the 14th Congress of the International Headache Society (IHS) , hosted by American Headache Society (AHS) September 10-13, 2009 in Philadelphia. [Mrs. McCain’s speech will be at 4 pm, Thursday, September 10 at the

Philadelphia

Conference

Center.]

 

Mrs. McCain has suffered with extremely severe Migraines for the last 15 years, some disabling enough to require hospitalization.  She is one of more than an estimate 36 million Americans with Migraine.

“Cindy McCain has dedicated her life to making a better life for people around the world,” said Fred D. Sheftell, M.D., president of the AHS.  “We are honored and thrilled that someone with her prominence and credibility is willing to stand up and be counted in this silent disease. She is a true hero to Migraine sufferers everywhere.”   

  

 

In her keynote, Mrs. McCain will call on Migraine specialists to press for more research funding for the diagnosis and treatment of Migraine and to work with political leaders to raise public awareness of the enormous toll Migraine takes on sufferers.

 

 

“Migraine is a real disease,” she says. “I am one of the lucky ones who have been diagnosed but still I struggle with the pain and tremendous debilitation of this disease.  So many people never get diagnosed or receive effective treatment.”

Mrs. McCain experienced Migraine attacks frequently during her husband’s political campaigns. Ironically, it is not stress and pressure that bring on the Migraines – they seem to be triggered by something sensory: bright lights, sounds, or strong odors.

 “My family sometimes doesn’t know what to do when I get one of these attacks,”
 she says. “They try to be sympathetic, but the truth is I am absent from my life and theirs for 24 hours or more during and after an attack.” 

 

For many years, no doctor told her she had a real disease called Migraine. “I was so frustrated and in terrible pain. My family doctors and even neurologists did not take it or me seriously and did not prescribe proper treatments that could help me keep it under control.”

 

Cindy McCain to Deliver Keynote at Migraine Conference

 

How fitting September is Pain Awareness Month to have Mrs. Cindy McCain lead her voice to that of Migraine disease awareness as MAGNUM is still working with Congress to declare September as Migraine Awareness Month as well.  Mrs. McCain believes more research is essential. “I am astonished by the lack of progress in the field and the dearth of medical advances. I mean, there are no specific preventives, and not enough effective treatments,” she notes.

“My mission,” she says, “is to press hard for more awareness and respect for Migraine sufferers in the medical community and in our society and more scientific progress in Migraine.”

 

 She has a special place in her mission and heart for

America’s military veterans.

“So many soldiers in combat zones suffer with Migraines,” she notes. “More than 36% of

Iraq war veterans return home with disabling migraine. That’s about three times more prevalent than in the general population,” she says. “No one knows exactly why, but we still need to dig to get to the bottom of this for them and for everyone who suffers with this debilitating disease.”

 

           Mrs. McCain will deliver a three-point message to the assembled neurologists and Migraine researchers at AHS on September 10, 2009:

• Improve the lives of your patients with Migraine by listening, staying aware and understanding how disabling this disease can be.

• Work with political leaders to recognize the public health importance of Migraine and exploit a “brain trust” that increases funding to facilitate integrated multidisciplinary and interdisciplinary research networks that enable advances and insights to flow back and forth from the lab to the practicing physician and back again.

• Create a public awareness campaign that raises awareness of this disease for what it is and the enormous physical, medical and emotional toll it takes on sufferers.

Migraineurs can tell you horror stories of how ‘people’ misinterpret artifacts created by the disease for a host of incorrect assumptions.  In addition, there are those of you reading this who have struggled as an adult with Migraine attempting to pursue life just as a ‘Normal person’ does.  (How is that going for you?) All the time we are pushing ourselves way beyond human condition can endure and of course no one out there but select intimate friends or loved ones have a clue.  Sadly in some cases even family and loves ones can fail to ‘get it’ and the struggle in those cases can lead to tragic results.  Well after Thursday night that might all begin to change after some of the most talented Migraine medical and scientific experts get to listen to new Migraine advocate Cindy McCain tell our story to them for us, Migraineurs everywhere thank you Mrs. McCain.  Or should we have asked you to give them hell?

 

About the American Migraine Foundation

The American Migraine Foundation is a non-profit foundation supported by the American Headache Society and generous donors dedicated to the advancement of migraine research. The mission of this newly formed foundation is to support innovative research that will lead to improvement in the lives of those who suffer from Migraine and other disabling headaches. (http://www.americanmigrainefoundation.org/)

 

 

 

About the International Headache Society

IHS is an international professional organization with more than 1,000 members working with others for the benefit of people affected by headache disorders. The purpose of IHS is to advance headache science, education, and management, and promote headache awareness worldwide. Its website is www.i-h-s.org.

 

 

 

About the MAGNUM, National Migraine Association

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. Its website is www.migraines.org and their online publication is www.MigraineBlog.com.

 

Art Versus I Think I Am Dying?

Tranquility's Quiet Strength" USS LCS Freedom Docked in Old Town, Alexandria, Virginia. Photograph by  ©  Michael John Coleman 2009

WASHINGTON, D.C.; MONDAY JUNE 1st, 2009--Special By Michael John Coleman, MAGNUM Executive Director and Founder.

If you ever wondered what a heart attack looks like through the eyes of an artist while it is happening, look no more!  So you missed that opening at Principle Gallery or maybe one in Soho, DC--New York--no matter, put your feet up and take a walk through MAGNUM's 'Little Galleries' (Someone out there got that reference I hope?!) and peruse some artwork created in the mist of an unwelcome cardiovascular event!  If you want to read more about the Migraine’s three-fold increase risk of heart attack reported in a recent medical study—then check out MigraineBlog’s Memorial Day Monday's article on MyMigraineConnection!  If you already read that article then walk into the next online room of our gallery, and learn a wee bit about our navy’s newest member of the surface fleet.
  

A MIGRAINEUR'S PHOTO ESSAY--

HIS HEART IS IN HIS ART  

In an effort to keep my cool while I was fighting to breath and stay calm—no small feat—I deployed the only trick I knew—focus on my art while trying to get the perfect image of the new Littoral Combat Ship USS Freedom on her first Deployment, with the National's Capitol Dome in the far background off to the right on the waterline horizon!

 

 "Freedom Attack"                  © Michael John Coleman 2009

I can still hear the melodic drone of the ships powerplant as her high speed diesel throbbing was somehow comforting.  My sister thought I was insane, but all good photographers know you can't stop when you see that image in your mind—possible heart attack or not!  So there you are suffocating—BUT only if you move or try to speak—if I stand still and focus through my camera in my hand I’m breathing.  I, of course, do what all good photographers do when we see an image before us, we 'stop time' when we lock onto an image we know we can translate it from our minds with the camera we hold in our hands.  Unfortunately my ‘time stopping’ trick might keep me calm but every time I advanced a few more feet towards the end of the dock I had to stop as I was still suffocating and can find no breath in my lungs.

 "Wilson's Turmoil Anew"         © Michael John Coleman 2009

The sweat began to run down my face as if we were on the banks of the Congo River, in central Africa not here on the banks of the Potomac River on a gentle spring night in America. I knew as soon as I turned around my sister would figure out something really bad was happening and rightfully so she would demand call 911.  I, as many men, was in full denial hoping "If I just rested a few minutes I could catch my breath hoping "If I just rested a few minutes I could catch my breath". After all I have been in horrible near screaming pain from my spinal disease while “getting the shot” or many a severe Migraine I suffered while creating countless award winning photographs I have taken in my lifetime!!  So while I looked back from the camera and I moved two more feet closer to the shore and thus the path back to a cab home. 

  

 One of my heros both as an artist & photographer is Edward Steichen, in addition he gave back to his country offering the power of his images he made during WW2.

Once again I raised the lens back up and retreated one more time back to elegance of composing an image just as Alfred Stieglitz , Edward Steichen, or Edward Weston even as if I were in the company of beloved Migraineur artist photographer Lewis Carroll and for a few more minutes I felt safe, then I powered down the powerful little Leica® Panasonic® camera and thought to myself “My GOD I am having a heart attack…”.  Then I turned to my calm sister who advised me that I look horrible and asked what was wrong?  Now I was really worried.  

"Heart Attack Path!" (Yea, I thought I was going to walk this back to get a cab home, DeNile de river!) © Michael John Coleman 2009

Sadly, maybe only an artistic doctor reading all this will 'get' my explanation, but it is an accurate one just the same.  An intimate recollection of how I used different skillsets to stay calm when as a public health advocate not all that I had heard about sudden heart attack was what I had expected.
 
One more thought, once the Alexandria City paramedics arrived, as scary as all this was, once in the back of the ambulance I know I was going to survive.  Once I heard the words “heart attack” as they were prepping me for surgery ‘tomorrow’ it all came home.  An ironic twist was while awaiting test results for the upcoming surgery the precautionary planting of a nitroglycerin patch on my chest every so many hours triggering the worst Migraines I have had in years!  But what can you say, that is a major side effect of nitroglycerin treatment if you are a Migraineur or carry its genes. Having said that, the Migraine sensitivity of the ICU team and the staff at the Inova® Alexandria Hospital was outstanding, even thought I had a very rough few weeks, but look forward to a full recovery.

Here is a DOD phopograph of the USS Freedom a few days before my fateful visit.  For perspective I was positioned about 500 feet south, in this case that would be the direction the bow (front) of the ship is facing.

Sadly, maybe only a doctor who might be reading this will 'get' this explanation, but it is an accurate one.  But seeing the nation’s newest elegant class of peace-keeping surface littoral combat ships.  Not to digress but one of the reasons I wanted to photograph the new LCS was to capture an image of a ship correctly designed to fight the next war not the last war.  This is a corvette sized ship, that is a warship smaller than a frigate but not as large as a destroyer and for you who could not care about the subplot in this article, or what a what the hell is a frigate anyway and can I say it outload in public?
 
Yes, many of us have grumbled about a ‘frigate’ Migraine unwittingly remarking that our Migraine hurts as if a battleship is slugging it out in our skull.  Anyway you look at this new ship is a Breakthrough—As I recover I think to myself it would be nice to see a future breakthrough treatment thanks to Headache On the Hill—they could be that destroyer of a Migraine that almost destroyed our whole Memorial weekend!

'Freedom's Eventide'             © Michael John Coleman 2009

There you have it, I set out to create some artwork based appropriately around a naval vessel to work something up for Memorial Day—along the way I took all of us on a adventure of discovery about the role our Migraines may or may not play with our heart health!  I hope you enjoyed the artwork, it may have saved my life…

© Michael John Coleman 2009.
 

MAGNUM Nearly Loses Its Founder, A Life Long Migraineur, to a Major Heart Attack

 © Michael John Coleman 2009.

  “Attack On Freedom"  If you ever wondered what a heart attack looks like through the eyes of an artist, look no more!  In an effort to keep my cool while I was fighting to breath and stay calm--no small feat—so I deployed the only trick I knew-focus on my art and tried to get the perfect image of the new Littoral Combat Ship USS Freedom on her first Deployment, with the National's Capitol Dome in the far background or the right on the waterline horizon!
 
While International News Agencies MSNBC & Others Point Out Studies Support  Migraineurs have Twice the Chance of Heart Attacks & Strokes!
 

 WASHINGTON, D.C.; FRIDAY MAY 9th, 2009-Updated MONDAY MAY 25, MEMORIAL DAY-Special By Michael John Coleman, MAGNUM Executive Director and Founder.
 
When I was a young man I was employed as an Art Director working for Naval Sea Systems Command (NAVSEA) down the road from MAGNUM's current offices in a beautiful place called Crystal City, Virginia.  Know readers will know why MilitaryMigraine.com and other military Miggraine projects such as the DMM project (Defending the Military Migraineur) several years ago have been so important to me personally and to MAGNUM in general. It was the pulse of the Cold War ship design and innovation which helped to win that forty year conflict. With that little tale of how history touches all, a lesson all too often retold on Memorial Day.
 
So let me tell you a personal story related my possible Migraine induced heart attack (Ouch!) echoed in a recent study which reported some Migraine sufferers have twice the chance of heart attacks and, or strokes.  Many readers we know have seen the MSNBC TV broadcast "Killer Headache: Migraines Hike Stroke Risk" which originally aired last March, and again recently this month.  MAGNUM, both here at www.MigraineBlog.com  and www.migraines.orghave been receiving anecdotal evidence that MAGNUM for purposes of discussion find statically provocatively significant. In other words we constantly hear  stories about friends or family member who has suffered Migraines for decades only succumb to an unwelcome cardiovascular event regardless of a total lack of risk factors such as poor eating habits, smoking, diabetes, high blood pressure, abuse of alcohol, abuse of drugs, obesity, and lots of Kielbasa AKA Polish sausage & eggs every morning for decades!
 
The fact is scientists agree Migraine disease is a risk factor for life threatening cardiovascular conditions such as Stroke and heart attack.

Recent studies show those who suffer from Migraine disorder with aura have double, perhaps triple, the risk of stroke or heart attack, compared with non-Migraineurs (people who don't get Migraines).
 
In a study of 175 people completed last year, University of Toledo neurologist Gretchen Tietjen - who treated Leslie after her stroke - found that nearly a third of those with migraines had signs of blood vessel damage, almost five times higher than the controls.

In the Kurth T, et al. "Migraine and Risk of Cardiovascular Disease in Men." Published in the respected medical journal "Archives of Internal Medicine" a couple years ago settled the argument as far as I was concerned. [2007;167:795-801]

For more on some of the current national press on Migraines and cardiovascular disease check select press filtered out by our partners at MyMigraineConnection.  How about an excellent article by a reporter I have been interviewed by many times over the years by health reporter Amanda Gardner who's story 'Migraine Frequency Influences Heart Attack, Stroke Risk' covers all the bases about Migraine and heart attack risk.

 

No one enjoys the experience of gazing into the ICU wondering how long the surgery will be in the morning, and if it will work and repair my heart?  Will there be any complications?  All those years of avoiding certain foods--will they really pay off or will that have not even made any difference?  When you loved ones leave after visiting hours are over you are beyond alone surrounded by (in my case) caring strangers.  Yes my nurse stealthily checks my BP and other fluids every hour--so just when you fall asleep--you are up again hurting now wondering if the surgery will aggravate your Migraines post op?  Next stop the operating room!  © Michael John Coleman 2009.

If this experience has done anything for me it has hardened my resolve for more NIH research in more directions regarding Migraine than just disease treatment.  We need to have the best understanding of this complex neurological progressive disease, to have the best knowledge of how to improve quality of life for the suffering millions of Migraineurs. 

End of Part One!
 
Of a Multi Part Series

 

Congressmen Ask Other Members of Congress to Support Equitable Funding for Migraine & Headache Disorders

  © Michael John Coleman 2009

Help Your Congressperson to Support Equitable Funding for Migraine & Headache Disorders Today!

WASHINGTON, DC—(Thursday, March 12th, 2009)—(Updated March 14th, 2009)—Today Congressmen Peter Welch issued Dear Colleague letter already signed by three other U.S. Representatives who are asking for other members of Congress to join them and sign this important Congressional document to improve the healthcare for over 48 million Americans.  What Congresspersons Peter Welch, Jean Schmidt, Tammy Baldwin, and Raul Grijalva asking for what MAGNUM requested during their visits to the Senate and the Congress while attending Headache On the Hill 2   in the nation's capitol last month.

Here is their request-

In short we all asked that the House L-HHS Appropriations Subcommittee prioritize the full and equitable funding of NIH research on Migraine disease and headache disorders in the FY2010 federal budget.

In an e-mail which went out this morning to all members of Congress stated the following:

Help address a group of disorders that disables over 48 million Americans.

Join us in requesting that the House L-HHS Appropriations Subcommittee prioritize the full and equitable funding of NIH research on headache disorders in the FY2010 federal budget.
 
Headache disorders, including migraine, chronic daily headache and cluster headache, affect over 48 million of our constituents. NIH funding for research into these disorders has never been appropriate to the scale of the problem. (See attached fact sheet.)
 
The Alliance for Headache Disorders Advocacy, the World Health Organization, the World Headache Alliance, the American Academy of Neurology, the American Headache Society, the Headache Cooperative of New England, the Headache Cooperative of the Pacific, the Migraine Research Foundation, Miles for Migraine, the National Headache Foundation, the National Migraine Association (MAGNUM), and the Ohio Headache Association have called for substantial increases in NIH funding for research on headache disorders commensurate with their tremendous disease burden.

Please see the attached letter to Chairman Obey and Ranking Member Tiahrt requesting report language that prioritizes a long overdue increase in support for NIH research on headache disorders and fair peer-review of headache research grant proposals. THIS IS A PROGRAMMATIC REQUEST FOR REPORT LANGUAGE ONLY.

If you wish to co-sign this letter, or for answers to any questions, please contact Ms. Shayla Livingston in Mr. Welch's office (202) 225-4115.

Sincerely,

 

PETER WELCH                          JEAN SCHMIDT
Member of Congress                Member of Congress
 

 

Here is the actual letter Congressman Welch is asking other member of the U.S. Congress to sign on to help all of us and our families, loved ones, friends , and co-workers. You can help too by contacting your Congressman or Congreswoman today.

Take a minute to read the letter from Congressman Welch & Congresswoman Schmidt below.  Then please contact your Congressman or Congresswoman this afternoon!  Even for those of you who are not sure who your Congressmen is, or you dont know your Congresswoman's e-mail address, not to worry.  Just check out the next paragraph!

To contact your Representative using our partner's Action Alert webpage complete with sample e-mails to help you get the best information to your representive.  The AHDA website simplifies contacting your members of the House with the right message at the right time. You will even be able to add a brief personal statement to your members of the Houseif you wish.

Please write Your Representative or e-mail them by going directly to AHDA's  "Write Your Representative" webpage .  Do it now and you will feel better in the morning!

Now here is the actual letter you would be asking your to Representative to sign-

The Honorable David R. Obey                          
Chairman                                                         
House Appropriations Subcommittee on Labor, Health, Human Services
and Education                                                  
2358-B Rayburn House Office Building             
Washington, D.C. 20515  

The Honorable Todd Tiahrt
Ranking Member Senate Appropriations Subcommittee
 on Labor, Health, Human Services and Education
2358-B Rayburn House Office Building
Washington, D.C. 20515

Dear Chairman Obey and Ranking Member Tiahrt,
 

            We are very mindful that the House Subcommittee on Labor, Health and Human Services, Education and Related Agencies (Labor-HHS) will be faced with many difficult choices in 2009. However, we respectfully request that the committee recognize and rectify at this time the federal neglect of Americans disabled by headache disorders.

Headache disorders are the most prevalent of all neurological disorders. 36 million Americans will experience a migraine attack this year and 12 million Americans will suffer from chronic daily headaches. Collectively, headache disorders cost the United States economy more than $31 billion annually, including 9 percent of all lost labor. The National Institutes of Health (NIH) expends less than $13 million annually on all research related to headache disorders. This represents less than 0.05 percent of the NIH budget. 

            The Alliance for Headache Disorders Advocacy, the American Academy of Neurology, the World Health Organization, the World Headache Alliance, the American Headache Society, the Headache Cooperative of New England, the Headache Cooperative of the Pacific, the Migraine Research Foundation, Miles for Migraine, the National Headache Foundation, the National Migraine Association (MAGNUM), and the Ohio Headache Association have called for substantial increases in NIH funding for research on headache disorders commensurate with their tremendous disease burden.

            We hereby request that the following report language be appended to the FY 2010 bill that appropriates funding for the NIH:
 
“NIH funded research efforts on headache disorders have not been commensurate with their enormous disease burden. The Committee strongly urges NINDS (1) to solicit grant applications for fundamental and translational research on headache disorders with Requests for Applications (RFAs), and (2) to recruit new investigators aggressively with Program Announcements with set-aside funds (PASs) for career training and transition (F and K) awards specifically devoted to the investigation of headache disorders. The Committee strongly urges the establishment of a screening program for therapies for headache disorders comparable in scope to the Anticonvulsant Screening Program (ASP). The Committee strongly urges the NIH Center for Scientific Review to provide fair peer review by ensuring that headache research investigators have the option of review of their grant proposals by an Integrated Review Group study section containing at least three! permanent members who are principally headache research scientists. The Committee commends NINDS for recently initiating a process towards defining Headache Disorders Research Benchmarks and requests a report on the progress of this program. The Committee also requests a report on the status of NIH intramural research programs related to headache disorders.”

Thank you for your consideration.

Sincerely,

Like we said, please write Your Representative or e-mail them by going directly to AHDA's  "Write Your Representative" webpage .  You have read the Congressional letter so do it now and you will feel better in the morning!
 

MAGNUM's MigraineBlog.com Letter-to-the-Editor Regarding Headache On The Hill 2

  
Photo © Michael John Coleman 2009

Renown Medical Author and Migraine & headache specialist William B. Young, M.D. is pictured above at the second aannual 'Headache On the Hill' earlier this week.  Dr. Young seen here debriefing Migraine & headache advocates from around the nation.  With his front line exposure to this need for more NIH support, which he observes first hand as he happens to be the Inpatient Program Director at one of the nation's top headache clinics--The Jefferson Headache Center in Philadelphia, Pennsylvania.

MAGNUM and Other NGOs are Asking You to Write Your Senators and Representatives to Support More NIH Research Into Migraine Disease & Headache Disorders

WASHINGTON, DC—(Saturday, February 28th, 2009)—While attending Headache On the Hill 2  in the nation's capitol earlier this week MAGNUM's Executive Director Michael John Coleman had the pleasure of interviewing one of the country's best Migraine disease and headache disorder experts, one Dr. William B. Young, a member of the American Headache Society (AHS) and American Academy of Neurology (AAN).  Dr. Young appealed to the popular MAGNUM website to use its resources to advance Migraine advocates and the tens of thousands of MAGNUM daily readers to pick-up a pen, or sit down at their keyboards to take heart to a call to action, a call to communications!  Having said that, please read his letter to the editor at MAGNUM;

MAGNUM Letter to the Editor

If you suffer from headaches, it’s time to act. The Alliance for Headache Disorders Advocacy (AHDA), a coalition of medical and lay groups advocating for headache patients, is asking you to write your senators and representatives to support more research into severe, disabling headache disorders, such as Migraine, chronic Migraine, and cluster headache.

“It’s just a headache,” is often the response from employers, family members, and even doctors to the plight of individuals with disabling headache. One patient with severe daily Migraines told me she rarely left her house. Other patients tell me about losing their jobs because of frequent absences caused by their headaches. Doctors say to me, “I’m glad you’re here, because I really don’t like taking care of headache patients.” The headache sufferer is dismissed at every level.

The World Health Organization (WHO) has calculated that severe migraine attacks are as disabling as quadriplegia. Cluster headache pain is well recognized as perhaps the most severe pain that can be experienced. Nine percent of all missed work is due to headaches. Yet the federal government spends far less finding ways to improve the lives of patients with headache disorders than of patients with better accepted illnesses.

Asthma profoundly impacts the lives of those who have it and, like headache disorders, needs chronic management. However, Migraine and other headache disorders received less than 13 million dollars for research in 2007, while asthma received 294 million dollars. On an individual basis, the National Institutes of Health (NIH) spent 36 cents per Migraine sufferer and $12.25 for each person with asthma.

The lack of NIH research funding not only delays development of new effective therapies. Medical schools cannot afford to develop research programs in headache disorders on their own. A spiral of disinterest in providing care for headache patients develops, and this attitude is conveyed to medical students, who are headache sufferers’ hope for the future.

Patient advocacy is a powerful means of influencing health-care change. Government interest can make a huge difference. After years of neglect, autism gained the attention of federal and state legislatures, and autistic kids finally have hope.

Headache sufferers need government to recognize their illnesses. Last year the AHDA brought dozens of headache doctors, scientists, and patient advocates to Washington DC to ask Congress for increased headache research. I met with Senator Specter to enlist his help. As a result, the Senate sent a message to the NIH urging them to focus their attention on headache disorders.

This was a good start, but not enough. Please use the AHDA website (www.headacheadvocacy.com) to convey to your members of Congress your desire for more research into headache disorders.

William B. Young, MD
Associate Professor of Neurology
Thomas Jefferson University
111 S. 11th Street, Suite 8130
Philadelphia, PA 19102
215.955.2243

MigraineBlog Follow-Up on HOH 2

If you think your e-mails, letters, or telephone calls will not make a difference don't fool yourself.  More than ever Congress is now looking at every possible way which will improve both health-care with better policy application as well as more efficient use of tax dollars as it relates to health-care delivery.  Dr. Young's Letter-To-The-Editor opens the door for our legislators having a first hand understanding of the needs of both the medical community and the citizens needing improved care.

Keep visiting your Migraine advocate websites such as AHDA website (www.headacheadvocacy.com), and MAGNUM (www.migraines.org ) for complete background on the impact of Migraine disease and headache disorders.  For weekly updates on the progress of improving the research funding at the National Institutes of Health  (NIH) for Migraine disease and headache disorders make sure to check in www.mymigraineconnection.com and of course www.MigraineBlog.com as we fight on for a better quality of life for all head-pain sufferers.

To learn more about Dr. Young's above average Migraine & headache clinic or if you know someone in the Philadelphia metropolitan area in need of excellent medical care witha focus on intractable Migraines or stubborn chronic daily headache please visit the Jefferson Headache Center's website today.

NGOs Join Forces to Support the National Pain Care Policy Act of 2009 & Military and Veteran’s Pain Care Acts

 

Photo © Michael John Coleman

United States Congressman Mike Rogers (R-Dist. 08) of Michigan speaking to a room full of pain healthcare patient advocates on Capitol Hill.  Congressman Rogers has offered excellent leadership now going into a second Administration regarding access to better pain management offering hope for a better quality of life for suffering Americans.

MAGNUM Signs Consensus Statement Supporting the 2009 National Pain Care Policy Act & Military and Veteran’s Pain Care Acts

WASHINGTON, DC—(Wednesday-January 29th, 2009)—We hoped readers had the opportunity to watch Dr. Donna Shalala today broadcasting from University of Miami which we suggested you catch to learn about health plans of the new Administration.

Speaking of what is new with the government and healthcare?  Great news for those who have supported the 2008 National Pain Care Policy Act and the Military and Veterans Pain Policy Acts!

Many of the readers of MigraineBlog.commight recall last year many non-government organizations (NGOs) such as MAGNUM and the American Pain Foundation were successful in harnessing our collective voices as the Military and Veteran’s Pain Care Acts were signed into law.

Thanks to the leadership of American Pain Foundation we made tremendous strides with the National Pain Care Policy Act in 2008.  But MAGNUM’s and other organizations need to continue to support this act to accomplish passage of this bill in 2009.  

Read more >>

It is anticipated Congresswoman Capps (D-CA) will re-introduce the amended bill (passed in the House of Representatives last year) with the sponsorship of Congressman Michael Rogers (R-MI). MAGNUM was very pleased that the bill passed the House last year and moved to the Senate, and hope that with continued momentum will propel the bill through both the House and the Senate in this new session of Congress.
 
In the last Congress, MAGNUM and its members, readers, and visitors supported the bill back when MAGNUM endorsed the Consensus Statement on the Bill. The American Pain Foundation ask for MAGNUM’s support again, by confirming our endorsement of the Consensus Statement supporting the National Pain Care Policy Act 2009.  Which we of course did, which shows how efforts such as this or next month Headache On the Hill can improve the quality of care we pain patients have access to with a bit of work.

Click here to read the Consensus Statement.

The Consensus Statement with endorsers is a powerful tool to demonstrate the broad-based support for this important legislation, and will be used to secure co-sponsors and further our momentum to gain passage. By uniting, mobilizing and leveraging our collective voices, we can improve pain management. It is not acceptable that over 76.5 million Americans suffer pain and the majority do not receive appropriate care!

If you work with another NGO or volunteer with one you might want to ACT NOW to add your organization to the list organizations endorsing this legislation and encourage other organizations to join the list of Consensus Statement Endorsers.
 
To view past organizational support for national pain legislation, see the 2008 Consensus Statement of the National Pain Care Policy Act and the Military/Veterans Pain Care Acts Consensus Statement.

Visit MyMigraineConnection.com to learn even more about the National Pain Care Policy Act. 

Iraq War Veteran Talks About Using Exercise to Improve Pain Care Plans

American Pain Foundation Online Chat with Derek McGinnis, Pain & Amputee Advocate

WASHINGTON, DC—(November 17th, 2008)—Please join our friends at the American Pain Foundation on this Friday, November 21st at 8:00 pm ET in APF’s PainAid Chat Room for this Live Chat with Derek McGinnis, the American Pain Foundation’s Amputee Advocate.  APF will be discussing the importance of exercise as part of your pain care plan.  Something many Migraineurs will find both interesting and helpful with their pain management plan.

LIMITED SPACE - MAKE YOUR RESERVATION TODAY!!

Derek is an Iraq War Veteran who served in the Navy as a Hospital Corpsman for 11 years.  After being involved in an IED explosion in Fallujah, Iraq and losing his leg above the knee, Derek focused on physical exercise and triathlon training to help him cope with the mental and physical stress associated with pain during his recovery.  Please join APF and be inspired by Derek’s story to involve exercise in your pain care plan.

There is limited space for this chat, so please go to Military/Veteran Section of PainAid ASAP for reservation instructions. If you do not already have a login name and password for PainAid, please click here first to register for access to PainAid. If you have previously registered with PainAid and have forgotten your password, click here. If you have difficulty accessing PainAid or have any questions, please email Chats@painfoundation.org for assistance.

This Friday, November 21st at 8:00p.m. EST

This program by the American Pain Foundation is just another reason why small non-government organizations (NGOs) work together to improve the quality of life for pain sufferers.  APF has also worked with MyMigraineConnection on the APF and HealthCentral’s Pain & Creativity Exhibit, useing art in disease awareness and education, something MAGNUM has been promoting for over 15 years now.

So tune in Friday or better yet join in and chat with a top health advocate.  MAGNUM would also wish to thank Derek McGinnis for his service to our country, and his continued service to the public with his advocey.

PRESIDENT BUSH HAS SIGNED THE MILITARY AND VETERANS PAIN CARE ACTS INTO LAW

Photo Illustration By Michael John Coleman 2008

New Laws Will Provide Needed Pain Assessment and Treatment to Millions of Military Personnel and Veterans

WASHINGTON, DC—(October 15, 2008)—Updated October 19, 2008—MAGNUM is very excited to announce that the The Military Pain Care Policy Act of 2008 (HR 5465) was signed into law today by President George W. Bush.  Our friends at the American Pain Foundation in Baltimore, Maryland have been at the heart of marshaling this important pain care bill through Congress as we continue to push the National Pain Care Act with them.

We turn to Will Rowe, Chief Executive Officer, American Pain Foundation to explain what this bill that President Bush signed into law today will do for pain sufferers in the U.S. military, as well as veterans. According to Chief Executive Officer Will Rowe;

“Today is a momentous occasion for all of our military personnel and veterans who have bravely served our country, many afflicted with debilitating and traumatic injuries that result in lifelong chronic pain and recovery. The American Pain Foundation (APF) celebrates the signing into law two bills that include critical provisions for pain care policy improvements.

“The Veterans Pain Care Policy Act (S 2160), originally introduced in the Senate by Senate Veterans’ Affairs Committee Chairman Senator Daniel Akaka (HI) in 2007, and amended to the Veterans Mental Health and Other Care Improvements Act of 2008 (S 2162), will include a provision to establish a pain care program within all inpatient Veteran’s Administration (VA) facilities and provide the necessary pain management for long‐term chronic pain disabilities. The law will also require providing education and training to VA healthcare professionals on how to assess and treat pain, as well as increasing research on pain care.

“The Military Pain Care Policy Act of 2008 (HR 5465), originally introduced in the House of Representatives by Congressman David Loebsack, and amended as part of the National Defense Authorization Act, will require the Department of Defense to implement a pain care initiative to provide comprehensive pain care for active and retired military personnel.

“Thus far, more than 30,000 soldiers have been wounded in action in Iraq and another 2,000 soldiers have been injured in Afghanistan. Pain is a leading cause of disability among veterans. Nearly half of those returning from combat in Iraq and Afghanistan report pain‐related problems. The Department of Defense does not have an adequate pain care program to access and treat them. Although advancements in body and vehicle armor, medical triage and rapid evacuation to medical care have improved soldiers’ chances for survival, it also means more wounded soldiers, who would have lost their lives in previous wars, now suffer terrible extremity wounds and other blunt injuries. These courageous men and women are in the prime of their lives, which are forever changed. They must have access to quality, coordinated pain care that also helps them to reintegrate into society.

“Our current military personnel and veterans have served our country proudly and with honor, but have been suffering senselessly. Their voices have long been heard by the American Pain Foundation and other national partnering agencies that have urged the passage of legislation to improve pain care. The bi‐partisan work and support from our legislators and the signing into law by the President upholds the standard of medical care our military men and women unequivocally deserve and need.”

About the American Pain Foundation

You may be familiar with the American Pain Foundation (www.painfoundation.org) by the current collaboration with The HealthCentral Network, Inc. (www.HealthCentral.com) and their second "Pain and Creativity" Exhibit. An juried exhibit dealing with chronic pain with artists from around the world who use their pain to inspire their art.  For more about this pain awareness project visit MyMigraineConnection.

Founded in 1997, the American Pain Foundation (APF) is an independent nonprofit 501(c) 3 organization serving people with pain through information, advocacy and support. The mission of APF is to improve the quality of life of people by raising public awareness, providing practical information, promoting research and advocating to remove barriers and increase access to effective pain management. For more information, visit www.painfoundation.org.

About APF’s Military/Veteran Initiative

This initiative was formed to reach out to active military and veterans who are in pain and provide them with educational information, and support to improve their pain care, decrease their sense of isolation, and encourage them in their pursuit of a better quality of life for themselves and their families. Visit http://www.painfoundation.org/page.asp?file=Veterans/Intro.htm.

CONTACT: Tina Regester Ph: (443) 690-4707
tregester@painfoundation.org

MAGNUM Brings On Board Another Military Migraine Advisor

MAGNUM Continues to Defend the Military Migraineur

WASHINGTON, DC; September 2nd, 2008—MAGNUM issued our Defending the Military Migraineur (DMM) Report to key members of the United States Senate Arms Committee after spending years trying to assist active duty military personnel and veterans disabled by Migraine disease.  Terri Burchfield, our Legislative Director, Susan Denny our Information Services Director, and Michael John Coleman our Executive Director drove to Capitol Hill right after 911.  They had to stop the car every other block to be checked by police, some officers armed with machine guns, on their way to the first meeting with then Senate Arms Chairman Senator John Warner (R-VA). 

"I have lived in the Washington, DC area my whole life and it was the first time I recall seeing the police carrying submachine guns on Capitol Hill.  It looked like something out of a bad movie, at that point more than any airport screening did the terrorist reach out and touch your soul.  Here we are carrying in our suitcase MAGNUM's DMM Migraine report to present to the Congress to help those serving who struggle with Migraine.  All I could think about was they might blow off our military health concerns due more important terrorist tasks at hand.  How ironic Osama bin Laden gets away with more suffering as the nation's business is set aside to focus on stopping him and is cohort." Remarked Michael John Coleman about that meeting with Senator's Warner's office back in 2002.

So can imagine our excitement when we saw Friday's news about several military Migraine medical studies, something that would have been unheard of a decade ago.  But the government and its military agencies have risen to the occasion.  Weather it is with newer agencies such as the Armed Forces Health Surveillance Center or studies such as the "The Prevalence and Impact of Migraine on US Military Officer Trainees"on of the studies mentioned above.  This study offers us a look at the "Prevalence and impact of migraine in US Army officer trainees".  More on this in a later article, but with MAGNUM's limited resources and time we are happy to report we are bring on board someone to assist us with some of the military Migraine related projects.  In addition you can look forward to a Teri Robert article on these new DOD studies too at MyMigraineConnection.com soon as well.

MAGNUM issued the DMM report based initially on one case to assist a U.S. active duty U.S. marine who contacted us for help.  He wanted both better care for his debilitating Migraines and wanted to continue serving his nation in uniform.  Calls such as that were common pre-911 and Operation Iraqi Freedom, so you can imagine we get many more calls and e-mails requesting information or help now.  Some of the changes MAGNUM has been working on such as the recommendation for upgrading Title 38: Chapter I: Part 4: Section 4.124a: Sub-section 8100 Migraine's rating to reflect the current medical understanding of Migraine disease take endless time to wind through the federal system. 

By the way the Defending the Military Migraineur (DMM) Report was hand delivered to Senators John Warner (D-VA) Chairman; Charles Robb (D-VA) 2nd Ranking Minority Member; and John McCain (R-AZ). We also delivered a report with recommendations for upgrading Title 38: Chapter I: Part 4: Section 4.124a: Sub-section 8100 Migraine's rating to reflect the current medical understanding of Migraine disease to the three Senate Arms Committee Members in early 2000.  So as you can see we have been working very hard to improve Migraine care for the Vets.

Welcome Ronald C. Lackey, he served in the U.S. Navy from 1983 until 1992. It was during his second enlistment that he started experiencing Migraine that worsened until the point of suffering from them 2 to 3 times a week and had a loss of vision from hemianopsia (A secondary condition of his Migraines). Even though Ronald wanted to stay in the navy, the military decided to discharge him because of his disability. He was denied many of his veteran benefits due to how the military and the Department of Veterans Affairs treat people suffering from Migraines. Ronald has had to fight for his disability pension and for the other veteran’s benefits that are guaranteed to veterans, but are not always assessable.

It took him eight years to receive his educational benefits and for the VA to recognize his Migraines as a disability. He thought that he was alone in his fight until a civilian doctor told him about us--MAGNUM.   Then after reading through much of the website Ronald contacted the us directly.  According to Ronald "MAGNUM helped me realize that not only was the VA wrong about a myriad of topics regarding Migraines, MAGNUM helped me realize that this organization was advocating for veterans and military personnel that suffer from Migraines."

Ronald called MAGNUM over the years, but recently when he and Executive Director Michael John Coleman ended up discussing several current problems with the VASRD listing and after Ronald had assisted MAGNUM with background on several projects MAGNUM, so offered the former sailor a position as a Board of Directors, Veterans Affairs Advisor. 

In the past Ronald has used his experiences to help other veterans during his time in college by helping start several college veterans’ clubs and being an advocate for veterans’ rights. He now spends much of his time advocating for veterans and civilians suffering from Migraines. He graduated from DePaul University in 2008 in the concentrated field of “the sociological aspects of the military."  MAGNUM looks forward to Ronald's insight to his veteran colleagues needs regarding the impact due to their Migraine disease.

Online Chat, Pain and Depression:

It’s Not All in Your Head

With Brenda Murdough MSN, RN-C, American Pain Foundation
Tuesday, June 17th at 8:00p.m. EST LIMITED SPACE MAKE YOUR RESERVATION TODAY!!

WASHINGTON, DC; June 16th, 2008—(Updated from www.migraines.org New News last week.) MAGNUM has long talked about the complicated issue of co-morbid Depression related to Migraine disease.  Which is why we strongly suggest joining in with our friends at the American Pain Foundation on Tuesday night at 8:00PM.  As of today this is still some limited space left.

Did you read Depression and Pain, A Conversation With Matt Bair MD, MS in the Pain Community News (Winter 2008, pg. 3) and want to continue the discussion? Here's your chance.

Please join us for this Live Online Chat with Brenda Murdough MSN, RN-C and explore the relationship between chronic pain and depression, how to recognize depression and some helpful treatment options and ideas.

Brenda currently serves as the American Pain Foundation Coordinator of the Military/Veterans Initiative where she advocates for the pain management needs of Military Personnel, Veterans, and their caregivers.   

A member of the American Society for Pain Management Nursing, Brenda earned her nursing diploma from the Albert Einstein School of Nursing in Philadelphia, PA, a Bachelor of Science, Management, degree from Keene State College in Keene, N.H. and a Master of Science, Nursing Education degree from Rivier College in Nashua, N.H.

Join us for this lively and interesting discussion! There is limited space for this chat, so please click here ASAP and follow the instructions on the Military/Veterans Section of PainAid in order to make your reservations. If you do not already have a login name and password for PainAid, please click here first to register for access to PainAid. If you have previously registered with PainAid and have forgotten your password, click here. If you have difficult accessing PainAid or have any questions, please email Chats@painfoundation.org for assistance.