Washington Press Event Breaks Ground
Dr. Andreas Kogelnik and Ryan Prior, who suffers from Myalgic Encephalomyelitis (ME), headlined a press briefing in Washington, D.C., on Jan. 24. The event took place at the venerable National Press Club and was attended by a mixture of reporters and ME patients. Notably present were reporters from The Washington Post and The Christian Science Monitor.
The event was organized by nationally syndicated columnist and TV host Llewellyn King and his wife, Linda Gasparello, also a print and broadcast journalist. It will be streamed on the Internet by the Blue Ribbon Foundation.
The purpose of the event was to draw attention to the plan developed by Prior and endorsed by Kogelnik to embed first- and second-year medical students with specialist clinics. These would include the Open Medicine Institute in Mountain View, Calif., which Kogelnik founded to treat ME (known as Chronic Fatigue Syndrome (CFS) in the United States) patients and those with similar perplexing, immune system-related diseases.
Prior, who must swallow a cocktail of 20 pills a day, get an injection one a week and an infusion once a month, says he is one of the lucky ones who can function most of the time. To promote his medical student-embed program, he founded the not-for-profit Blue Ribbon Foundation. He is producing a documentary on ME.
Kogelnik said that the disease is sometimes referred to in medical schools, but only in passing. He said it was important for the students to intern early because their third year of medical school, they already begin to specialize and it might be too late.
There are some states where there are no specialists at all, and it is very hard to get a diagnosis of any sort. Prior said he went from doctor to doctor before he got help. “I am one of the lucky ones who found the right doctor, who was able to help me. My heart goes out to the many who are never correctly diagnosed,” he said.
Kogelnik said this was particularly terrible in the case of very young children who while incapacitated by ME could be thought to be slow-learners. In some cases, this led to them be diagnosed as being autistic, although he did not absolutely rule out a relationship between ME and autism.
The night before the press briefing Kogelnik, Prior and King appeared on “The Jim Bohannon Show,” which is carried on 500 radio stations. Following the press briefing, Kogelnik and King were interviewed on Sirius XM Satellite Radio, which is available throughout the United States and most of Canada.
King said he had talked to important media outlets that expressed interest but were unable to attend. These included C-SPAN, The New York Times and Reuters.
King pointed out that a week earlier, “White House Chronicle,” the weekly news and public affairs program on PBS which he hosts, had been completely devoted to a discussion of ME with activist Mary Dimmock. That program aired on 200 television stations in the United States and worldwide on Voice of America Television. An audio version of the show aired three times on Sirius XM Radio’s popular POTUS (Politics of the United States) Channel 124.
During the press briefing, Kogelnik said there were no magic bullets in fighting a disease like ME and he emphasized the need for research at the molecular level.
King said there was no instant way to raise media awareness. “The walls of Jericho are not going to fall down overnight,” he said. “But every contact with a major news outlet increases awareness; that will lead to more coverage, and coverage will lead to government action.”
He added that “just because this disease is hidden-in-plain-sight, it does not mean that there is not terrible suffering and a moral and human imperative for action.”
In June 2011 King and a friend, Deborah Waroff, created a YouTube Channel, ME/CFS Alert, to “comfort the sick, educate the doctors and shame the government.” There are now more than 50 videos on the channel. Earlier this month, he began raising money to continue making these informative videos — filmed by award-winning videographer Barry Worthington, featuring interviews with specialists and patients — onGoFundMe.com.
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