Hi. I'm Peter Mansbach, and I'm president of Circadian Sleep Disorders Network.
I hate to be a scold, but:
For three years we've been asking to have Circadian Rhythm Sleep Disorders listed and described on the NIH website. Over a year ago some of our members sent emails to Dr Twery to support this campain. NIH responded saying the changes were in progress. They still haven't happened.
Delayed Sleep Phase Disorder alone has three times the incidence of narcolepsy. But there is no mention of circadian disorders on the NIH web site. And too many people still deny its existence. We need this exposure.
The website describes four types of sleep disorders: sleep apnea, restless legs, narcolepsy and insomnia. Circadian Rhythm Sleep Disorders needs to be included.
There are four patient organizations on this board, representing - you guessed it - sleep apnea, restless legs, narcolepsy and insomnia. Circadian Rhythm Sleep Disorders needs to be included.
Is there some institutional decision within NIH not to recognize Circadian Rhythm Sleep Disorders?
What has to happen to get our disorder recognized on the NIH web site? represented on this board? Should we be writing someone higher up?
I do want to thank Dr Twery and the other participants in the NIH sleep biomarker workshop. I spent the last two afternoons listening to it. I just want to add how important it is to our circadian-disordered community, to find simple biomarkers for circadian timing.
This would simplify diagnosis of these disorders, determine what time of day to start treatment, and even (perhaps) persuade primary care doctors that maybe the patient has a real disorder, refer him to a sleep expert and don't just prescribe a sleeping pill.
It would allow diagnosis in cases of comorbid disorders - for example I know several people with narcolepsy who, I suspect, also have Delayed Sleep-Wake Phase Disorder, and for whom treatment would be more successful if they also treated the circadian disorder.
I also want to remind everyone that treatment is not always successful. There may be different underlying causes of the symptoms. There may be bad reactions to bright light or to melatonin. If a patient says he's followed the regimen, but it didn't work, please accept that it didn't work. Help the patient get accommodations or, if necessary, disability.
1 - National Institutes of Health (U.S.)