Note that Circadian Sleep Disorders Network is not affiliated with any pharmaceutical, medical device, or other company.
Circadian Rhythm Sleep Disorders (CRSDs or CRDs) 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 U.S. letter paper (8½x11) or on A4 paper (non--U.S.). Booklets can be printed for DSPS or for Non-24 (the same file can be printed on either U.S. or A4 paper). Alternatively you can email us at to request a printed copy of any or all these documents (please specify which, and how many you really need). Be sure to include your name and full postal address. We will send these at no charge to you.
We've updated N24calc, the web app that predicts when you'll be awake if you have Non-24 with a constant day length. The new version uses 12-hour input if that's what your computer's locale is set to, or 24-hour time if it's set to that. It fixes a bug in the previous version in case your "today" started before midnight but it's now after. And adds a notification when it switches to daylight saving time (also depends on your locale). It assumes you're in your awake period when you're using it. Let us know of any problems.
On Monday, Feb. 9, 2020, Project Sleep and the Sleep Research Society co-hosted an Advocacy Day on Capitol Hill bringing together patient advocates and sleep researchers to urge Congress to support critical sleep research and awareness efforts. CSD-N board member Jason Myatt (third from left) participated in support of circadian rhythm sleep disorders research. Dr Phyllis Zee (far left), a member of our Medical Advisory Board, also participated. Thanks to all who helped.
The Board of Directors of Circadian Sleep Disorders Network has elected its officers for 2020 - 2021:
Many thanks to our outgoing secretary, Jen Heller Meservey, for her service.
The Sleep Disorders Research Advisory Board (SDRAB) of the NIH (U.S. National Institutes of Health) met on Jan 6 and 7 to work on their Sleep Disorders Research Plan. Susan Plawsky (not pictured), our circadian rhythm disorders (CRD) patient representative, attended both days. She plays an important role in calling attention to places where CRDs are likely to be overlooked.
Our president, Peter Mansbach, vice president James Fadden, and member Alexandra Escalera also attended and made brief statements Jan 6 on behalf of CRD patients during the public comment period. Here are Peter's remarks:
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:
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.
- 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 largely 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.
The Society for Research on Biological Rhythms (SRBR) is an international society that promotes the advancement and dissemination of research on all aspects of biological rhythms.
Recently, CSD-N was invited to provide input about circadian rhythm disorders to SRBR's advocacy program. As a result, SRBR.org launched three new website pages: Circadian Rhythm Disorders describing DSPD, ASPD, and Non-24; Awareness & Support with tips on living with a CRD; and Get Involved, which encourages people to share their story, join CSD-N and contribute to our survey.
Thanks to SRBR Public Outreach Committee members Laura Kervezee, Ph.D. and Louise Ince, Ph.D., and CSD-N Board Member Alexandra Wharton for contributing to the content.
Last summer CSD-N prepared recommendations on Needed Research which we submitted for inclusion in a White Paper on needed research for circadian rhythms. The White Paper is being prepared by SRBR together with AASM (American Academy of Sleep Medicine) and SRS (Sleep Research Society). The White Paper is still under development.
The election for the Board of Directors of Circadian Sleep Disorders Network has concluded. Incumbents Peter Mansbach and Jason Myatt were re-elected to two-year terms; incumbent Karen Martin to a one-year term. We also welcome the two new board members who were elected for the first time, to two-year terms: Rachel Amon and Samuel Bearg.
CSD-N Board member Alexandra Wharton agreed to be interviewed about sleep and circadian disorders on Radio Islam in the UK, in response to their invitation. The interview took place on Nov 25, 2019. Your can hear the program here; the sleep segment starts at 1:08:15, and Alex's portion runs from 1:14:20 to 1:28:32.
They thanked her:
Thank you so much for your your participation on the VOI Drive Time show. It is SO important for the show to have callers who are enthusiastic and informative as you were. For listeners the highlight of the show is the guest callers so we really value someone like yourself who can come on and give great informative answers in an attention-grabbing manner. You were an amazing guest and I hope that you can come onto the show again!
It's good to have different people representing CSD-N and raising awareness of Circadian Rhythm Sleep Disorders. Thank you Alex and (previous post) Jason.
There are a total of five positions to be filled for the Circadian Sleep Disorders Network Board of Directors. Four of these are for two year terms and one is for one year. As described in the bylaws, the candidates with the four highest numbers of votes are elected for two years. The one with the fifth highest number of votes is elected for one year. In case of tie, the current Board will vote to resolve the tie.
Five people are running to fill these positions:
Voting will occur from Dec 1 through Dec 15. All members in good standing, i.e. those who have paid dues for 2019 or 2020 by Nov 20, should receive email on or about Dec 1 with a unique link to eBallot.io to vote. (NOTE: We have switched balloting providers: BallotBin's email stopped working, and we discovered this only when we tried to mail the ballots.)
The Board of Directors has ultimate responsibility for the activities of the organization, including use of funds. Members in good standing elect the Board. The Board elects the officers, who have specific responsibilities and carry out much of the work. The Board of Directors currently has eight positions. Four of the eight members are elected in even-numbered years, and four in odd-numbered years, for two-year terms. If someone resigns during their first year, the remaining year of their term may be filled in the next election. This is what is occurring now.
CSD-N Board of Directors member Jason Myatt joined Project Sleep and the Sleep Research Society (SRS) who co-hosted a Hill Day. They urged Members of Congress to support federal funding for critical sleep research and awareness.
Jason was joined by other patient advocates, organizations, and societies, including Start School Later, Hypersomnia Foundation, Wake Up Narcolepsy, Narcolepsy Network, American Academy of Sleep Medicine, and the Society for Research In Biological Rhythms.
In the photo Jason is third from the right, between Project Sleep CEO Julie Flygare (second from right), and CSD-N Medical Advisory Board member and research scientist Dr Phyllis Zee.
The day started with a few presentations, one patient-advocate's story and a couple medical/research professionals discussing the historic and current state of research and funding on sleep. The most notable things for me were that sleep research does not really exist on its own, both from a funding and an agency standpoint. It is wrapped up in a bunch of other fields, from Neuroscience to Department of Defense research. Funding and awareness is steadily growing, but especially with the politics around budgets the past couple years it looks like sleep awareness and research funding can easily slip through the cracks. These presentations were attended by several (I'd guess 10-20) legislative aides, along with the sleep advocates and researchers.
The rest of the day was spent going from office to office in our small groups. There were about 15 advocates total, split into 4 or 5 groups. Each meeting went about the same: we'd go into a conference room with a legislative aide, and each advocate would take turns telling their story - for the patient advocates, their disorder and their experiences within the medical system; for the researcher, what they'd worked on and its importance. The Legislative aide would occasionally ask questions, and they generally seemed very receptive. We'd then talk about a couple of the relevant budget issues, and then be on our way to the next office.
It appears that the program which the group was advocating for didn't make it into the final budget bill, but they are planning further advocacy in February, and Jason is expecting to participate on our behalf again.
At the Stanford Medicine X conference in September, CSD-N Board Member Alexandra Wharton gave a talk titled Night Owls and Late Chronotypes Unite — Let's Stop Living Against Our Body Clocks!
During the presentation, she explained what Delayed Sleep Phase Disorder is, the challenges of diagnosing it, and its possible causes including recently discovered genetic variants. Attendees learned that the 2017 Nobel Prize for Medicine was awarded to scientists studying the circadian clock, and that research in how a person's circadian clock affects their physical and mental health is growing.
She stressed that DSPD is intractable and can't be adjusted with willpower or self-discipline; it is a physiological - not a psychological - condition. She described how living against one's body clock is damaging, and that later start times at work and school are imperative for late chronotypes.
The session had a rapt audience of healthcare providers, researchers and patients, and the level of discourse was encouraging. There was a discussion following the presentation about how DSPD is frequently mistreated: SSRIs can make night owls more sensitive to light, phase-delay chronotherapy can turn DSPD into Non-24, and long-term benzodiazepine use is dangerous.
The theme of this year's Medicine X conference, Listening to patient voices drives change in healthcare, aligns with CSD-N's tagline, Together we have a voice. CSD-N's successful letter-writing campaign asking the NIH to include circadian rhythm disorders in its list of sleep disorders exemplifies how a community of patients can bring about change.
Now there's a respected U.S. government website you can point disbelieving friends and relatives to, that clearly acknowledges our disorders:
The lack of coverage of Circadian Rhythm Sleep Disorders on the NIH website has been a particular concern of our president, Peter Mansbach, who continued raising the issue with NIH every year for the past seven years. Some of you helped with our email campaign several years ago - thank you. And thanks to the NIH Sleep Disorders Research Advisory Board (including our representative Susan Plawsky) who supported our effort. And to Dr Michael Twery, head of the NIH National Center for Sleep Disorders Research, who helped make this happen.
CSD-N president Peter Mansbach has written an Overview of Circadian Rhythm Sleep Disorders for the 2019 Q3 issue of A2Zzz, the magazine of AAST (formerly the American Association of Sleep Technologists).
Among other things, he emphasizes the need for laboratory sleep studies to be performed according the patient's circadian clock rather than expecting the patient to sleep at the lab's normal study time.
Night owls between the ages of 14 and 17 are wanted for a 3-week study to test whether wearing glasses that block different amounts of light in the evening affect your body clock and could help teenagers sleep and feel better. The study is being performed at the Biological Rhythms Research Laboratory, which is affiliated with Rush University and is located in Chicago, IL.
Circadian Sleep Disorders Network is pleased to welcome Dr Elizabeth Klerman to our Medical Advisory Board. Dr Klerman had invited us to participate in the AASM Working Group on circadian rhythm research needs, and has worked with us on a grant application. We welcome her expertise and interest in Circadian Rhythm Sleep Disorders.
The Sleep Disorders Research Advisory Board (SDRAB) of the NIH (U.S. National Institutes of Health) met on Aug 1 and 2 to work on their Sleep Disorders Research Plan. Susan Plawsky, our circadian rhythm disorders (CRD) patient representative, attended both days. She ably represented our interests, again urging that CRDs receive adequate emphasis. She plays an important role in calling attention to places where CRDs are likely to be overlooked. The other participants on the SDRAB were receptive to our point of view.
Our president, Peter Mansbach, and member Alexandra Escalera also attended Aug 1, and made brief statements on behalf of CRD patients during the public comment period.
As some of you know, Circadian Rhythm Sleep Disorders are still not listed (as of Aug 2019, when this article was written) or described on the NIH website. We have been asking for this to be added for seven years now. At this meeting the Web Communications Group reported that a new sleep page is live, and Circadian Rhythm Sleep Disorders will be added in September. We hope so, although we have not yet seen any proposed content. (Note added Sept 30: it has finally been added. See article above.)
We have submitted a Needed Research document to the working group preparing a white paper on circadian rhythm sleep disorders research needs. This is a real opportunity for CSD-N to advocate for the research we keep wishing to be done.
Susan Plawsky, our representative on the NIH Sleep Disorders Research Advisory Board (SDRAB), has been in contact with Dr Elizabeth B Klerman, a sleep research physician and professor at Harvard Medical School. Dr Klerman is on the committee of scientists working on a white paper on needed circadian rhythm research for SRS/AASM (Sleep Research Society/American Academy of Sleep Medicine) and SRBR (Society for Research on Biological Rhythms), at the SLEEP 2019 conference in June. She asked Susan to prepare a list of research issues that CSD-N would like to see addressed.
Susan had previously requested input from our entire community for such a list that she used at the NIH Sleep Disorders Research Advisory Board meetings, and her initial list for Dr Klerman included those suggestions from the community. Time was short, so we have not been able to ask for new input from the community.
James Fadden, Peter Mansbach, and Susan have prepared a document on behalf of CSD-N, elaborating on those suggestions and presenting a more detailed list for Dr Klerman to present to their committee. We apologize if we have overlooked something, but we have worked day and night (mostly night ) to finalize this in time.
You can see our Needed Research document at https://www.circadiansleepdisorders.org/docs/NeededResearch.php .
We appreciate the working group's interest in hearing the patient point of view.Archived News 2019
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 (using the password you created when signing up for the email list) 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 your incoming Niteowl list emails go to). Your password will be sent to you at that address.
If that doesn't work, you can unsubscribe by sending email to
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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 DSPD 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.
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 Circadian Rhythm Sleep Disorders, 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.
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