Presentation to the NIH Sleep Disorders Research Advisory Board, Jan 6, 2020
by Peter Mansbach
Hi. I'm Peter Mansbach, and I'm President of Circadian Sleep Disorders Network.
Those of us with Delayed Sleep Phase Disorder or Non-24-Hour Sleep-Wake Disorder suffer. Some of us sleep when our bodies tell us to sleep. We give up good careers to do so, and struggle to earn a living on our odd schedules. And we're still often tired. Others force themselves to be up for the workday, and become sleep deprived, year after year, with all the health issues that eventually result. We desperately need solutions.
Yet this is the current state of research on Circadian Rhythm Sleep Disorders:
Researchers do not even agree on how to define circadian rhythm disorders.
We do not know how many people have these disorders.
We do not know what the underlying causes are.
We do not have a quick way to diagnose these disorders.
We do not have good treatments; what we do have are often ineffective.
What little we do know often isn't implemented by clinicians.
The public, and even many in the medical community, do not even believe these are real disorders. And they certainly do not understand their severity.
This is why we're here. Our current representative, Susan Plawsky's term ends in June. We hope someone else from our circadian-disordered community will be appointed to this Board. Two that I know of have applied.