Patient’s Plan to Educate Doctors on Chronic Fatigue Syndrome

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MEDIA ALERT

Patient’s Plan to Educate Doctors on Chronic Fatigue Syndrome

A young man is taking on the medical establishment with a plan to educate medical students about the devastating disease Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis, that is little, or not understood at all, by most doctors. Ryan Prior, 24, has Chronic Fatigue Syndrome, which affects about 1 million Americans and 17 million people around the world.

Prior, accompanied by infectious disease researcher Dr. Andreas Kogelnik, will discuss his plan to tackle the lack of understanding about Chronic Fatigue Syndrome among doctors by embedding medical school students for 10 weeks with specialists. They will also discuss the pioneering work being done on Chronic Fatigue Syndrome at Kogelnik’s Open Medicine Institute in Mountain View, CA.

When: January 24, 2014

Where: The National Press Club, 529 14th St., NW, Washington, DC 20045

Speakers: Dr. Andreas Kogelnik, director, the Open Medicine Institute, Mountain View, CA, expert on molecular medicine and chronicl disease, and supporter of the medical internship program for Chronic Fatigue Syndrome.

Ryan Prior, patient and creator of the Blue Ribbon Foundation, based in Atlanta, GA, which will manage and coordinate the medical intern program.

Facilitator: Llewellyn King, executive producer and host,“White House Chronicle” on PBS and columnist, Hearst-New York Times Syndicate

Background: Chronic Fatigue Syndrome has no cure, succumbs to no drug, and is hard to diagnose because there are no biological markers in blood or urine. About twice as many women as men are stricken with the disease, and they tend to be more severely incapacitated.

Victims suffer a variety of awful symptoms including severe declines in cognitive function, fatigue that is not abated by sleep, joint pain, and the inability to undertake any physical activity without collapsing afterwards. Many victims are often bedridden in tomb-like rooms – even in bedroom closets — because of their sensitivity to sound and light.

For most sufferers, it is a disease that dictates bare existence for the rest of life, shattering millions of lives worldwide. Holding a job is difficult or impossible for most sufferers; family and friends often abandon them. Suicide rates are high.

Even among physicians, there is a critical lack of knowledge about the disease, according to Kogelnik. “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,” he said.

Contact: For more information, call Llewellyn King at (202) 441-2703. To arrange a broadcast interview with either Ryan Prior or Dr. Andreas Kogelnik, e-mail Llewellyn King at lking@kingpublishing.com

3 Comments for : Patient’s Plan to Educate Doctors on Chronic Fatigue Syndrome
  1. Very good! One thing that got my attention: ,Background: Chronic Fatigue Syndrome has no cure, succumbs to no drug, and is hard to diagnose because there are no biological markers in blood or urine.’

    For those who are not familiar with the disease it may be more clear to say: ‘…is hard to diagnose because -even though the disease is clearly biological- there are no biological markers in blood or urine found yet.’

    Maybe researchers haven’t been looking for the right markers, or in the right place (e.g. spinal fluid).

    All the best with your project!

  2. God Bless You! I am fortunate to have a knowledgeable, compassionate team of physician’s. Many don’t and the suicide rate is way too high per PW me/CFS. Thank you for taking your time and LIMITED ENERGY to bring awareness. Sudden onset 6/16/93 3pm…….

    • Stacey
    • January 16, 2014

    Thank you for doing this. As a patient for over 20 years I know this desperately needs to be done. This is an outstanding and much appreciated thing, the more Dr’s who really learn about this the better off we will all be.Your time and effort to do this is appreciated by more people than you realize

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