A little note about the date chosen: May 12th was Florence Nightingale’s birthday. Nightingale is thought to have suffered from ME for years, because she did most of her teaching from her home and much of it when she was bed bound. This information was offered by Jennifer Brea, who was the moderator of the special episode through Thrive Show out of Princeton NJ, which can be seen on YouTube at this link.
The panel participants for the discussion were:
Jennifer Brea (Host and a patient suffering with severe ME) is the director of Canary in a Coal Mine, a documentary film about life with Myalgic Encephalomyelitis. She also cannot travel much and when she does, needs a wheelchair. She is mostly bed bound.
Leonard Jason is a professor of psychology at DePaul University and Director of the Center for Community Research. He has served on the editorial boards of ten psychological journals, and has served on review committees of the National Institutes of Health. He currently has NIH grants to study the epidemiology of ME/CFS among youth, and has a longitudinal study involving tracking college students before and after getting mono.
Ryan Prior is a journalist, film producer, and social entrepreneur from Atlanta, GA. A former writer for The Daily Beast and USA Today, he is now executive producer and writer of the feature film Forgotten Plague (previous working title: The Blue Ribbon). The documentary focuses on the role that major new trends in Big Data and genomic medicine play in addressing ME/CFS and transforming the future of medicine. In conjunction with the film, he is co-founder of the Blue Ribbon Foundation which will promote the documentary and install first-year medical students at top neuro-immune institutes.
Jeanette Burmeister is an attorney, ME activist, writer, mother, and wife. You can follow her health journey on her WordPress blog, Thoughts About ME. She is also an ME patient.
Beth Mazur is a fellow ME patient and the lead architect overseeing all technical planning for HealClick, a website focused on helping neuroimmune patients learn about treatment reviews from patients that best match them. Previously, she was a consultant and technical product manager for startup companies including Merced Systems and Jaspersoft. She also built open-source software for microfinance institutions with Grameen Foundation.
Llewellyn King is a journalist whose long career began in Southern Rhodesia (now Zimbabwe), where he was born and raised. He was a correspondent for Time, UPI, London newspapers. Before starting his own publishing group, he worked for many media outlets. As Editor-in-Chief of The Energy Daily, King Publishing Group’s flagship newsletter, he became renowned for his incisive reporting and commentary on the energy industry, and for his public speaking panache. Also, he is the founder, executive producer and host of “White House Chronicle” on PBS. He was a regular contributor on Voice of America, CNN, C-Span, NBC, “The Today Show,” “Meet the Press” and others. Llewellyn’s interest in ME is due to a friend who is a sufferer.
Following are only some of the many comments made and questions asked of the panel (there were many more, but I think the sample below gives an idea of the thoughts on observers’ minds):
“I’ve heard several journalists say they’d love to cover ME, but they need something to write about. What makes a story newsworthy? What can we do to raise the profile of ME in the media?”
“What is needed is a concise, succinct description about ME for the news media to use.”
“How can we instigate and invigorate interest in patients to join advocacy work for ME?”
“Find the right patron in Congress to carry our banner – perhaps a newbie congressperson who is looking for a cause.”
“How can the law be used as a tool for change? Do you think there is more potential for using the law in the US and other countries to advance ME advocacy?”
“How can we raise the funding needed for an ME lobbyist in Washington DC when we can’t even raise the funding for the much-needed research by interested and qualified scientists?”
“Change the name. Stop using ‘CFS’.”
“Is the internet enough for an ME advocacy presence?”
The actual video lasts 1 hour and 45 minutes. If you have the time and are keenly interested in learning about ME in the words of some of the people intensely involved, you will go away enlightened about what can be done in advocacy and you will find it to be quite compelling.
Llewellyn King’s long and remarkable career in journalism began in Southern Rhodesia (now Zimbabwe), where he was born and raised, as a 16-year-old foreign correspondent for Time, UPI and two London newspapers, The Daily Express and The News Chronicle.
Before starting his own publishing group, King worked for a pantheon of British and American media outlets. As editor in chief of The Energy Daily, King Publishing Group’s flagship newsletter, he became renowned for his incisive reporting and commentary on the energy industry, and for his public speaking panache.