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ME/CFS Panel Discussion to be Held at National Press Club

By HERWriter
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Panel Discussion on ME/CFS to be at National Press Club Photo Courtesy of Stephens Hiland

Dr. Andy Kogelnik, journalist Llewellyn King and 24-year-old Ryan Prior, a patient who has ME/CFS, will be participating in a panel at the National Press Club in Washington, D.C. on Friday, January 24, 2014.

The purpose of the event is to bring media exposure to the debilitating illness ME/CFS and to those who suffer from the condition.

ME/CFS is also known as myalgic encephalomyelitis, as well as chronic fatigue syndrome.

It is part of the spectrum of neuro-immune or neuroendocrine-immune diseases that includes autism, fibromyalgia, Gulf War Illness, Lyme disease, multiple sclerosis, multiple chemical sensitivities and Parkinson’s disease.

It's not unusual for ME/CFS patients to have one or more of these conditions.

ME/CFS is estimated to afflict about 1 million Americans, and may affect as many as 17 million people globally, according to the CDC.

Research by Leonard Jason of DePaul University has indicated that ME/CFS receives less coverage in medical text books than many other diseases that are less severe or less common, and what little information is found in text books is often inaccurate or outdated.

King, Dr. Kogelnik and Prior are coming together for this panel discussion on January 24 because they believe it's well past time to change this situation.

King is executive producer and host for "White House Chronicle" on PBS. He is a columnist for the Hearst-New York Times Syndicate.

In recent years he has written and has spoken about those who suffer from ME/CFS, determined that these invisible people should be seen, embraced, and helped by those around them, and by the medical community.

The panel will also double as a scene for the upcoming documentary on the illness "The Blue Ribbon," which Prior is producing with cinematographer Nicole Castillo.

In an email interview, Prior said that Castillo's intention was to make a documentary that will cause an awakening of awareness among the public, doctors, journalists, researchers and politicians for the sake of those suffering and for the future of the children who have ME/CFS.

Dr. Kogelnik of the Open Medicine Institute in Mountain View, Calif. is an expert on molecular medicine and chronic disease. He will be talking about the OMI's molecular science approach for study, diagnosis and treatment for ME/CFS.

Ryan Prior became ill on Oct. 22, 2006. He had been student president at Warner Robins High School in Warner Robins, Ga., captain of the cross-country team, and was taking three advanced placement courses. His aim was to attend Duke University or West Point, ultimately planning to become an Army Ranger.

But within weeks of becoming ill, Prior had to leave school. He managed to go back to his varsity squad but didn't last more than a few minutes before he was on the verge of collapse.

Prior was luckier than many who have ME/CFS. He eventually found a doctor who could help him. He now operates at about 90 percent, he says, as long as he takes 15-20 pills daily, and doesn't overdo it. He graduated Phi Beta Kappa from the University of Georgia.

The panel will be announcing the Blue Ribbon Fellowship. The Blue Ribbon Foundation will be funding medical students' summer fellowships at major neuro-immune institutes. Some of these institutes are the Open Medicine Institute, Institute for Neuro-Immune Medicine, and the Whittemore-Peterson Institute.

King will do an introduction, then Dr. Kogelnik will speak for a few minutes, followed by Prior. After this, reporters will take part in 45-50 minutes of questions and answers.

Dr. Kogelnik supports the medical internship program for ME/CFS. He and Prior will talk during the panel discussion about how to tackle the misunderstandings and misinformation about ME/CFS that exist in the medical community. Their goal is to embed medical students with ME/CFS specialists for 10 weeks.

Prior founded the Blue Ribbon Foundation, based in Atlanta, Ga. with Nicole Castillo, a close friend from college who serves as the Foundation's director. Prior is its president.

They will manage and coordinate the intern program in association with the organization's Board of Directors, which includes leaders from other national ME/CFS groups.

“The message is simple: American history has progressed in a logical line from women's rights, through civil rights, then to gay rights,” Prior said.

“Medical history has a similar process of ridicule, repression and ultimate acceptance: MS, AIDS, and now we want CFS to be the next step.”

Dr. Kogelnik said, “The parallels of the current state of CFS to the early days of misunderstanding around HIV are incredible – that is why I am supporting Ryan and his Blue Ribbon Foundation in their plan to educate medical students in this critical medical specialty.”

Want to help get the word out about the upcoming panel event? You can join Thunderclap, a social media wave planned to go out on Thursday, Jan. 23.

If you'd like to participate, click here to join, and use your Facebook and Twitter account for a one-time automatic announcement at noon on January 23.

The National Press Club is located at 529 14th St., NW, Washington DC 20045

For more information, you can call Llewellyn King at (202) 441-2703. If you'd like to arrange a broadcast interview with Prior or Dr. Kogelnik, you can send an e-mail to Llewellyn King at ]]>[email protected]]]>


Email Interview with Ryan Prior, Jan. 20, 2014.

MEDIA ALERT: Patient’s Plan to Educate Doctors on Chronic Fatigue Syndrome. Theblueribbonfoundation.org. Retrieved Jan. 20, 2014.

Blue Ribbon Fellowship.Theblueribbonfoundation.org. Retrieved Jan. 20, 2014.

A Young Man, a Big Disease and a Big Idea. WHChronicle.com. Retrieved Jan. 20, 2014.

Visit Jody's website at http://www.ncubator.ca

Reviewed January 21, 2014
by Michele Blacksberg RN

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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

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