UPDATE: The series will run on KDKA-AM 1020 April 21st Monday through Thursday (day of first FDA meeting) at 6:40 a.m. and p.m.
Today starts The Lens, a blog that will attempt to examine issues that remain out of the public eye and far away from public action. This first post is a series that’s slated to run on KDKA-AM in Pittsburgh the week of April 21st.
It’s about a disease often referred to as Chronic Fatigue Syndrome. The medical community knows it as Myalgic encephalomyelitis (you can hear the pronunciation in the segments below) and jointly known as ME/CFS for short.
The benign and innocent name was coined in the 1980s by the Centers for Disease Control and Prevention after an inability to pinpoint any certain cause or symptom set for the condition.
There’s no treatment or cure. Patients are often prisoners of their own minds and bodies, as those with severe cases can hardly move and having a simple conversation can leave a person exhausted.
The tide may be turning for patients, or at least that is the hope, as a first-ever stakeholders’ meeting organized by the Food and Drug Administration (which recently rejected the only drug in a decades-long clinical trial for ME/CFS sufferers) is being held April 25th and 26th in Bethesda, Maryland. With patients bound to their beds and trapped in their homes, hardly anyone knows of the condition; researchers and drug companies are reluctant to act in a static climate of splintered funding and medical opinion–and some are following dead leads that presume the condition is mentally related.)
The condition is real, ignored, and for most, terminal.
The following is formatted for radio. Listen to a segment, then click back. Each is approximately 3 and a half minutes.
ME:CFS1 Day 1: What is Chronic Fatigue Syndrome?
ME-CFS2 Day 2: Why is this so controversial?
ME-CFS3 Day 3: Why is the FDA not acting?
ME:CFS 4 Day 4: Is there hope for patients?
For more information, visit:
Cited in this report: Robert Miller. Jocelyn Waite. Rivka Solomon. Jennifer Spotilla. Greg Mitchell. Dr. Bruce Rabin. Dr. Judy Mikovits.
Background: Dr. Nancy Klimas, Dr. John Chia, Dr. Paul Cheney, Dr. Daniel Peterson, and two patients who preferred to remain anonymous.