Note that Circadian Sleep Disorders Network is not affiliated with any pharmaceutical, medical device, or other company.
Circadian Rhythm Sleep Disorders (CRSDs or CSDs) are neurological disorders in which the sleep-wake cycle is out of sync with the day-night cycle. These include in particular Delayed Sleep Phase Disorder and Non-24-Hour Sleep-Wake Disorder. Also included are Advanced Sleep Phase Disorder, Irregular Sleep Wake Disorder, and Shift Work Disorder, which are defined here.
Delayed Sleep Phase Disorder (DSPD), also called Delayed Sleep Phase Syndrome (DSPS), is characterized by an inability to fall asleep until very late at night, with the resulting need to sleep late in the morning or into the afternoon. Questions? See our DSPS Q&A.
Advanced Sleep Phase Disorder (ASPD), also called Advanced Sleep Phase Syndrome (ASPS), is the opposite. It is characterized by falling asleep very early in the evening, and waking up in the wee hours of early morning, unable to sleep further.
Non-24-Hour Sleep-Wake Disorder (Non-24), also called Free-Running Disorder (FRD), is a condition in which a person's day length is significantly longer than 24 hours, so that sleep times get later each day, cycling around the clock in a matter of days or weeks. Questions? See our Non-24 Q&A.
Some people use the term reverse sleep, referring to the fact that sometimes people with DSPD and Non-24 end up sleeping during daylight and being awake at night.
We are asking our members and followers to give our brochure, and/or our Q&A booklets, to their sleep doctors and their general doctors on their next visits. It is vital to all of us suffering from circadian disorders that more doctors and their support staff understand these disorders and how disruptive they can be. The more doctors who know about us, the more patients we can reach, inform, and support. And the larger our membership, the more credible our voice on behalf of all people with circadian sleep disorders.
You can print out the brochure on US letter paper (8½x11) or on A4 paper (non--US). Booklets can be printed for DSPS or for Non-24 (the same file can be printed on either US or A4 paper). Alternatively you can email us at to request a printed copy of any or all these documents (please specify which). Be sure to include your name and full postal address. We will send these at no charge to you.
Last spring we received email from BBC (U.K. broadcast network) asking whether we could discuss sleep disorders in visually impaired people for a blind and visually impaired audience. Board member Lynn McGovern agreed to sit for the interview. It was edited and aired as part of a larger radio program, Why Can't I Sleep, the June 27, 2017 edition of In Touch. You can listen to it here; Lynn's segment starts 5 minutes into the program and runs about 4 minutes.
I recently returned from the December 7-8 meeting of the Sleep Disorders Research Advisory Board (SDRAB), held just outside of Washington, DC. I'm a patient representative on the board, which identifies research priorities for the National Center on Sleep Disorders Research (NCSDR), part of the (U.S.) National Institutes of Health.
Once again, I made my pitch for studies of circadian rhythm disorders (CRDs). I said that most government-funded studies of circadian rhythms (CRs) focus on a) the workings of normal CRs and b) the effect of CRs on health and disease. All are important, of course. But we need studies of circadian rhythm disorders! After all, this is the National Center on Sleep Disorders Research. I pointed out that CRs are a hot topic in medicine now; indeed, the 2017 Nobel Prize in Medicine was awarded to a team of CR researchers. What better way to understand CRs than to study people with disordered CRs? What better way to help people suffering with CRDs? Current treatments of CRDs are based, in large part, on the workings of normal CRs—which may explain why treatments often fail. In order to help people like us, researchers must study people like us.
Dr. Phyllis Zee stood up and backed me up. A prominent sleep and circadian-medicine clinician and researcher, she is a former SDRAB chair and one of the few researchers who study people with CRDs. She's also a member of the Circadian Sleep Disorders Network (CSD-N) Medical Advisory Board. It felt wonderful to have her in our corner.
After the meeting, Dr. Zee told me that the CRD community shouldn't rely solely on the government for research funding. She encouraged us to raise money and fund the studies we want. A tall order! Perhaps we need a celebrity with a CRD to pull strings, raise money, and donate to the cause.
I wish I could report that my board participation has been making a difference. Instead, I feel frustrated with researchers who seemingly lose sight of the patient's plight. I feel frustrated with the bureaucratic NIH, where the wheels turn very slowly. I feel frustrated with the many years that often pass between medical discovery and new treatments.
All that said . . . I learned of two promising developments for people with CRDs:
Thanks to James Fadden, vice president of CSD-N, for attending as a member of the public and updating the SDRAB on the CSD-N registry. Thanks, too, to patient Alexandra Escalera, who has a CRD plus several other sleep disorders. She drove a considerable distance to tell her harrowing story and remind researchers that science should serve people. (Peter Mansbach, CSD-N president, was ill and attended remotely, via the Web.)
Any feedback? Please email me at email@example.com.
--Dedicated to the memory of Nina Beth Macdonald, tireless supporter and champion of people with CRDs
The election for the CSD-N Board of Directors has concluded. We welcome new board members Karen Martin, Jen Heller Meservey, and Jason Myatt. Incumbent Peter Mansbach was re-elected to the board.
Dr Phyllis Zee, noted sleep researcher (and member of the CSD-N Medical Advisory Board) is organizing a new study of circadian disordered patients, and has expressed interest in using the Circadian Sleep Disorders Network registry to recruit patients. This will involve genetic sampling, which can be done at the patient's location.
Reminder: if you haven't yet signed up for the registry and taken our Circadian Rhythm Sleep Disorders survey, please do so at www.CircadianSleepDisorders.org/registry .
Contributed by James Fadden
Image by Maxfield Sparrow
Nov 17, 2017
It's that time of year again! Friday, November 24th is the 5th annual N24 Awareness Day, the day the online N24 community has chosen to spread knowledge of our condition (Non-24-hour sleep-wake disorder aka Non-24 or N24). To commemorate the day you are encouraged to write, draw, compose, film, or otherwise depict your experience of N24 for a world that has far too little awareness of our existence, let alone what our lives are like.
This year's theme is "Through the Looking Glass." Most people are familiar with the story of Alice, who passed through the looking glass into Wonderland, where everything was strange and different. Those of us with N24 pass through our own sort of looking glass, spiraling down a rabbit hole of twisted time. Because our body/brain clocks set us virtually travelling through time zones, we inhabit our own looking glass world, living among others but always set apart by the barriers of time -- as invisible but often as impassable as panes of glass.
To participate in N24 Awareness Day, all you have to do is post something somewhere on or near November 24th. We have N24 so we're not really bound by clocks and calendars, right? If you don't have anyplace to post your contribution or if you'd like to have it also published elsewhere, you are very welcome to submit it to the N24 Awareness Day blog at https://n24day.wordpress.com/
You can also pick up this year's participation badge at the blog: n24day.wordpress.com/participation-icons/. Feel free to use the participation icon any way you choose. It's great if you want to link it back to the blog, but that's not required. Feel free to copy the icon to your own server or just directly link to it from the blog.
Here's hoping we all have another creative, productive N24 Awareness Day this year!
A related article in honor of N24 Day, also by James Fadden, about the Nobel Prize for circadian rhythms appears here.
Oct 23, 2017
CSD-N Board of Directors welcomes our new secretary, Jen Heller Meservey. Thanks, Jen, for volunteering to help.
CSD-N is looking to create a list of sleep labs that will accommodate sleep tests (polysomnograms) at our unusual sleep hours. We believe that a lot of the diagnostic value of a polysomnogram is lost when you aren't sleeping at a time determined by your body's internal clock. So It would be of great value to our community to know which labs will adjust to allow patients to sleep at the time appropriate for them.
If you know of such a lab, please send the information to
Thanks to Karen Martin for initiating this project.
The goal is to post a list of sleep labs, analogous to our doctor list. And, by the way, if you can recommend a doctor who is knowledgeable about DSPD and/or Non-24 (and isn't already on our list), please send us that information too.
Oct 2, 2017
The Nobel Assembly at Karolinska Institutet has awarded the 2017 Nobel Prize in Physiology or Medicine jointly to Jeffrey C. Hall, Michael Rosbash, and Michael W. Young for their discoveries of molecular mechanisms controlling the circadian rhythm.
"[Dr.] Young said that one of the most important areas of study built on their work is what happens when the clock runs too fast or too slow. Most recently, scientists have discovered that one percent of humans worldwide have a mutation in the clock genes that is associated with delayed sleep or being a night owl. He said many of these individuals show up at sleep clinics wondering what to do, and the work provides a target to work on."
— Washington Post, Oct 2, 2017
Our vice president James Fadden and Dr. Katherine Sharkey have completed an update of their report on Non-24-hour sleep-wake disorder for the National Organization of Rare Disorders (NORD). You can read it at https://rarediseases.org/rare-diseases/non-24-hour-sleep-wake-disorder/.
In 2012 CSD-N requested that NORD include Non-24 in their database of rare disorders. James Fadden wrote the original report for the database along with Dr. Sharkey of Brown University. It was published in 2013.
The updated report contains new information published during the last four years. There are new sections on Differences in Cellular Clock Function and on Genetics, as well as other changes throughout the report. There are also many new references.
It is probably the most thorough reference available on the symptoms, physiology, and causes of both blind and sighted Non-24. The report discusses treatments but not in the same degree of detail. That is the policy of NORD which prefers their reports to focus on descriptions of the disorders rather than treatments.
With great sadness I have to report the death of Beth Macdonald. I've known Beth on the Niteowl email list for over 15 years. She was an active participant, welcoming new people and sharing her experiences with delayed sleep phase. She was one of the founders of Circadian Sleep Disorders Network back in 2011, and served on its Board of Directors ever since. She posted frequently on various Facebook groups (as Nina Beth), and was supportive of new group members and often answered their questions about CRDs. She maintained the accuracy of various circadian sleep disorder entries in Wikipedia, and often wrote journalists and others about inaccuracies in their articles on sleep. And she was a friend.
More details from her sister:
She was born to William and Alice Macdonald in Seattle, WA on June 10, 1942. She had a brother born in 1945, and a sister born in 1949. The family lived in Anchorage, AK, Friday Harbor, WA, Renton, WA, and Seattle, WA. Neena graduated from Roosevelt High School in Seattle. She was active in the Mountaineers (skiing, hiking, climbing) and Skandia Folkdance Club, and performed with Nordiska Folkdance while in Seattle. She moved to Norway in 1971. She remained in Norway with occasional visits "home" to visit family and friends in the US. She was a teacher, had a large online presence in groups including genealogy and circadian sleep disorders, and she was a good friend to many. She died on July 6, 2017 in Bergen from complications related to cancer.
Circadian Sleep Disorders Network, in partnership with AltaVoice, a wholly owned subsidiary of Invitae Corporation, is sponsoring a registry and survey. Please take the survey, if you have not already done so. We need more participants to be able to find connections between answers, for example whether perceived sensitivity to light can predict which treatments work best. And researchers want more participants so they can select people with the characteristics they want to study.
Here are some highlights of the preliminary results:
View more results, with numbers and charts, at www.circadiansleepdisorders.org/registry/survey_results_prelim.php. These are preliminary results based on responses of the 208 people who have completed the survey as of May 28.
For more information on the survey itself, see www.CircadianSleepDisorders.org/registry/registry.php.Archived News 2017
This is a free mailing list support group for people with DSPS and Non-24 to share their experiences. It's a good place for people just discovering these disorders to hear how others deal with them, as well as for long-time participants to get support and to provide support to others. There are often discussions of evolving treatment, useful to all. For further information, and to sign up, go to www.circadiandisorders.org/list.
Note that membership in Circadian Sleep Disorders Network and membership on this email list are completely separate.
Circadian Sleep Disorders Network is affiliated with this email list, and our volunteers assist the list administrator with some chores. CSD-N was formed by participants on this list, and many of our members post regularly. But we have no control over what appears or who can join, and list membership is completely separate from membership in CSD-N.
Once you've signed up for the list, you post by sending an email to Everyone on the mailing list receives that post as an email, and you receive everyone else's posts as emails. If you don't like to get separate emails, you can opt to receive in digest form, typically one email a day containing all the day's posts. You make that selection (after signing up) by logging in at www.circadiandisorders.org/list.
There are some rules:
The rules that the list software enforces are
An additional rule is PLEASE do not just reply to a message with a subject line containing "Niteowl Digest, Vol xxx, Issue xxx". That is obviously not informative and if you aren't careful you may include the whole list of messages in the Digest, making your message too large for the list.
Digest or not, it is a good idea to trim whatever you are replying to leaving just enough for people to know what you are replying to.
Of course, don't be snippy or insulting, and please take off-topic conversations off-list. And no advertising.
Once you've signed up for the list, you can also browse previous posts in the archive at
There is also a mirror of the archive on Yahoo at https://groups.yahoo.com/neo/groups/nite-owl/info. This is useful when the primary archives are not working, as sometimes happens. Login to your Yahoo account, or create one (free) - link is at the top right on that page. Then you have to Join the Yahoo copy of the list - this is separate from signing up for the list itself - there is a button on the Yahoo page to do this.
To unsubscribe from the Niteowl email list go to
and follow the directions at the bottom of the page. You will need to know your list password.
If you do not know your list password, send email to
with PASSWORD in the subject line. This email must come from the same email address that you subscribed from (which is the one you your incoming Niteowl list emails go to). Your password will be sent to you.
If that doesn't work, you can unsubscribe by sending email to
with UNSUBSCRIBE in the subject line. This email must come from the same email address that you subscribed from (which is the one you your incoming Niteowl list emails go to). If you do this, you will get an email back asking you to confirm. You must follow the instructions and confirm, or you will not be unsubscribed.
For more (or more current) help on list commands, send email to
with HELP in the subject line.
Our brochure is geared to the general public, to introduce DSPD (DSPS) and Non-24 to people experiencing symptoms of these disorders, and to their families.
Please distribute it to anyone who may be interested.
Print on lightly colored paper for some color, if you like. We used ivory.
|Brochure - web display||
Print on US letter size paper, PDF
Print on A4 size paper, PDF
The web display version shows the brochure panels in easy-to-read order. The print versions are meant to be printed out on both sides of a sheet of paper, then folded in thirds, creating a brochure. (In the print version, the panels will appear out of order on-screen.)
We have posted documents describing DSPD (DSPS) and Non-24, in an easy to read Question-and-Answer format. These are designed to give to family members, friends, employers, and school personnel, to help them understand these disorders. Feel free to print and distribute these. There are two different (but similar) versions, one for DSPS and the other for Non-24:
|DSPD Q&A - web||printer||booklet*|
|Non-24 Q&A - web||printer||booklet*|
The web formats display nicely in your browser.
The printer versions are formatted by your browser for printing a multi-page document.
The booklet forms are pre-formatted PDF files that you can print on two sides of a single sheet of paper, which then folds in half into a booklet.
* When printing the booklet, be sure to flip on the short edge (select this option if you have a double-sided printer).
|Spanish:||DSPS Preguntas y Respuestas - web||printer|
|No-24 Preguntas y Respuestas - web||printer|
|German:||DSPS F&A - web||printer|
|Non-24 F&A - web||printer|
We also have a one page Basic Fact Sheet that introduces DSPD and Non-24 to people who don't know about them. It's a quick and easy read, just the basics.
Former board member and artist Lily Style has created an infographic describing Circadian Rhythm Sleep Disorders. View it in your browser at www.circadiansleepdisorders.org/docs/CRSDGraphic.php. Feel free to repost the graphic to help raise awareness.
You can print it directly from your browser (we suggest making the browser window full screen - the image will resize). We are also posting JPG images in various proportions for printing directly on different sizes of paper:
We are offering merchandise (mugs, T-shirts, tote bags, bumper stickers, and a messenger bag) with our name and logo through CafePress,
www.cafepress.com/circadiansleepdisordersnetwork. (Note: if you just search CafePress you will find this merchandise, but at a higher price!)
Circadian Sleep Disorders Network is a Coalition Partner of Start School Later. We understand only too well the difficulties many teens have with early school start time, and we support the move to start school later.
smile.amazon.com you will be asked to confirm Circadian Sleep Disorders Network as your charity. Amazon will remember your selection. But you do have to go to smile.amazon.com instead of simply amazon.com, for each purchase, if you want 0.5% of that purchase to go to CSD-N. Note that you pay the same amount either way - through Smile the 0.5% goes to us, otherwise it goes to Amazon.
We have already received several contribution checks from Amazon! Please select Circadian Sleep Disorders Network as your charity. smile.amazon.com
Amazon and the Amazon logo and AmazonSmile and the AmazonSmile logo are trademarks of Amazon.com, Inc. or its affiliates.
Sign up at Welzoo by clicking here. Thereafter, every time you go to their home page, http://www.welzoo.com, Circadian Sleep Disorders Network gets a penny. They're paying for you to view their advertisements. Make it your browser's startup page and watch the contributions add up!
We have asked other sleep- and health-related web sites to add a link to the CSD-N website, so interested people could learn more about circadian sleep disorders. That also helps our search ranking, making it easier for others to find us. Sites which have linked to us include:
You can help: email other websites with a request to link to Circadian Sleep Disorders Network at www.CircadianSleepDisorders.org. Please use this primary address when suggesting links, not the shortcut.
This is a list of refences added to our Info page since the last newsletter. The newsletter lists references added since the previous newsletter. These are generally available to members only.
This web site is intended to provide generic information about CSDs, and
is not intended to replace discussions with a healthcare provider.
You should not use the information on this website for diagnosing or treating a medical or health condition.
All decisions regarding patient care should be made with your healthcare provider.
Office: 4619 Woodfield Rd, Bethesda, MD 20814
Phone: By appointment only, please.