Cindy McCain's speech at the International Headache Congress
Cindy McCain: Time to take action
Cindy McCain, the wife of 2007/2008 US presidential candidate John McCain, publicly advocated for the needs of migraine and headache sufferers at the 2009 International Headache Congress in Philadelphia, USA. In 2000, Cindy McCain supported her husband's presidential candidacy, which he lost to Republican candidate George W. Bush. She also became particularly well-known for her involvement during her husband's 2007/2008 presidential campaign.
Cindy McCain is herself a migraine sufferer. Her key statement was eagerly awaited by many sufferers:
"I am one of the many millions affected. The time is long overdue to address this issue.".
Her speech was met with a long standing ovation from the more than 2,000 international scientists and physicians at the 2009 International Headache Congress in Philadelphia on September 12, 2009. Cindy McCain outlined three key points:
1. “Improve the lives of your migraine patients by listening, raising awareness and attention, and understanding how severely debilitating the condition can be.”.
2. “Work with leading politicians and highlight the importance of health policy. Develop a brain trust to promote integrated, interdisciplinary research and care. Enable the translation of scientific research in the laboratory into practical care for those affected, and ensure that both areas inspire each other.”.
3. “Create a public awareness campaign to improve awareness of migraine and headache disorders and highlight the enormous physical, medical and psychological difficulties the condition poses for those affected.”.
Art in Philadelphia: Love
Dr. Fred Sheftell, President of the American Headache Society, said: “Cindy McCain has dedicated her life’s work to helping people around the world live better lives. We are honored and thrilled that someone with her prominence and credibility is standing up and speaking out against the silence and anonymity surrounding this condition. She is a true hero to migraine sufferers worldwide.”.
During her speech, Cindy McCain stated clearly: “My mission is to strongly advocate for greater awareness and respect for migraine patients within the medical community. Our society must also ensure that more scientific efforts are made in the care of headache patients.”.
International Headache Congress 2009 Philadelphia, USA
Cindy McCain herself suffers from a severe form of migraine. She has had to be hospitalized several times due to her condition. It wasn't so much the stress associated with her political support of her husband that triggered her migraine attacks, but rather bright light, noise, or strong smells. Mrs. McCain said: “Migraine is a truly serious condition. I am one of the lucky ones who has received an accurate diagnosis. But I still have to struggle with the severe pain and the significant disability caused by the condition. Nevertheless, many sufferers don't receive clarity about their diagnosis and don't receive effective treatment. My family often didn't know what to do when I had another severe attack. They tried to be sympathetic, but the truth is that during the attacks, I had to say goodbye to life for 24 hours or more.”.
She was clearly in the same boat as many other migraine sufferers. No one made it clear to her that she was suffering from a recognizable and treatable condition called migraine. Regarding her own experience with diagnosis and treatment, Cindy McCain said: “I was frustrated and in terrible pain. My GP, and even my neurologists, didn't take the pain and the condition seriously. No one prescribed effective therapies to help control the severe pain.”.
Cindy McCain also recalled how difficult it was for her to find clear words to describe her migraine pain. She explained how she tried to make her husband understand what she went through during an attack: “It’s torture. You’re like chained to a chair for four days. I can’t imagine what torture really means and how unbearable such ordeals must be, but I think it must be something like my headaches, because migraines must come very close to those experiences.”.
Cindy McCain also made clear her anger and frustration regarding the slow progress in the care of migraine patients. She saw the primary issue as the disregard for the needs of those affected by health policy. "I am utterly astonished by the lack of progress in this area. There isn't a single specific preventative medication for migraines, and there aren't enough sufficiently effective treatments to control attacks.".
Art in Philadelphia: Klammer
Mrs. McCain gave the scientists and doctors present specific advice: “My advice to the doctors is loud and clear. It is:
- Listen! Listen to what your patients tell you about their illness.
- Listen to how severe the pain is and how much suffering they have to endure.
- Listen to how pain is robbing them of their lives.
- Listen to how bad things are for them and how bad they feel.
- Listen to them. Take them seriously and help them take responsibility for their illness and for their lives.
Cindy McCain: “I am one of the many millions affected. The time is long overdue to address this issue.”.
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She's speaking my mind! I've been living with this pain for 30 years. Doctors and other people don't take you seriously. "Psychosomatic" is the magic word. Now I also suffer from severe depression and refuse to take medication.
I wanted to join Bettina Frank.
Migraine is not sufficiently recognized as a disability. The official notices
from social welfare offices simply refer to it as "migraine – pain disorder," and people are fobbed off with a disability rating of 30%.
Migraine is more than just a pain disorder. I agree with Cindy McCain: migraine is a disability, if
not a severe one.
It is often read in these forums that migraine patients are treated as psychosomatic patients, even though
it should actually be known that migraine is a neurological disease.
Perhaps researchers will be able to suppress the liver-damaging effects of CGRP antagonists, or
even avoid them altogether through a small chemical modification.
Warmest greetings to everyone – the medical team
– the tireless physiotherapists
– the nursing team
– the kitchen staff
and everyone I have forgotten.
Peter Schwirkmann
Thank you for this encouraging article! Mrs. McCain addresses topics very openly that are still largely taboo in our society. Migraine is an illness that incredibly restricts and hinders daily life, yet it often goes unnoticed by others. All too often, the "healthy" population lacks the awareness that someone suffering from migraines is not a malingerer or hypochondriac, but is genuinely seriously ill during an attack (and not only then).
Persistent pain, lack of acceptance from others, inadequate medical care, depression and resulting social withdrawal create a vicious cycle that is often difficult to break.
Therefore, I would like to take this opportunity to express my sincere gratitude to Professor Göbel and his entire team, who dedicate themselves to us headache patients day in and day out! Without your commitment, your research, and your extraordinary dedication, many of us would no longer have a life worth living.
The latest developments regarding CGRP antagonists are certainly sobering, but not discouraging. The most important thing is that research is being conducted at all, and eventually there will be a preventative treatment that can be used primarily for migraines. I'm quite confident of that.
Warm regards,
Bettina Frank