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.
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.
Circadian Sleep Disorders Network is setting up a venue for circadian rhythm disorder (CRD) people in the local DC/MD/NoVA area to meet other CRD peopls. Depending on interest, this may become a regular support group.
|When:||Monday, October 23, starting at 7:00|
|Where:||Holy Cross Hospital
1500 Forest Glen Road
Silver Spring, MD
Education Room #3
Note that there is a parking fee of $2 per hour at the hospital. The hospital is half a mile from the Forest Glen Metro station (red line) - some folks may prefer to come that way. If there is interest, a volunteer could pick a few people up at the Metro stop, if they can arrive sufficiently early, and drive them back after. Please let us know in advance if you want to be picked up ( ).
We would like some idea of how many people plan to come. Please let us know ( ) if you are planning to come, or if you would like to meet in the future but can't make the date or place this time.
People at the Narcolepsy Network conferences often mention how empowering it's been for them to meet other people with the same disorders and similar challenges and struggles.
Thanks to Kathy Shartzer, who volunteered to find us a place to meet, and made the arrangements with the hospital.
And the Société de Française de Recherche et Médecine du Sommeil (SFRMS) is promoting our registry on Facebook and Twitter, thanks to one of our volunteers. Unfortunately, their Facebook page is only visible to people in France (or perhaps the EU?), not in the U.S.
CSD-N has joined the PatientsCount Network, a directory of organizations, which is available to patients and researchers. You can see our organization profile at https://registry.fastercures.org/organization-profiles/1005.html?user=10307.
CSD-N secretary Annechien Foeth was interviewed about DSPS. You can watch the video at https://www.youtube.com/watch?v=lO1f5iaqgds. It is entirely in Dutch. YouTube can provide subtitles in a language of your choice: click on CC, then Options/Subtitles/Autotranslate/English (or whatever you choose). It's still quite garbled - I suspect the auto-transcriber didn't transcribe some of the Dutch words correctly, let alone then feeding it to a translation program. We're happy to be raising awareness wherever we can.
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.
CSD-N has implemented the secure HTTPS protocol for all of its website. This means that website content is encrypted prior to transmission, and any user content (such as when you join) is encrypted prior to transmission to us. This is handled behind the scenes by your browser. Many browsers display a lock symbol in the address bar to confirm this. (Note that even before this change, any financial information you submitted to PayPal was encrypted by virtue of being sent directly to PayPal. Same for registry/survey information, which went directly to AltaVoice.) Prior to this change some browsers issued security warnings when users entered the password to retrieve member information. The change to https fixes any insecurity, so these warnings will no longer appear.
All our URLs (web addresses) now start with https: instead of http:, but the rest of the URL is unchanged.
Any links you saved previously will continue to work, but will automatically use the encrypted communication.
The NIH (U.S. National Institutes of Health) Sleep Disorders Research Advisory Board (SDRAB) met June 22-23, 2017, to work on updating their research plan. Susan Plawsky, our patient representative on the board, participated. She emphasized the lack of sleep research done on circadian-disordered patients - most of what is done studies normal sleepers, and then treatment is based on that. We need more research on actual DSPD and Non-24 people.
One problem with studying CRD people is that it is difficult to determine a person's circadian phase. One of the researchers on the panel is developing a blood test for circadian markers. This of course would help immeasurably in diagnosis and treatment as well as research. Another problem is the difficulty in finding CRD people with desired characteristics to study. Our registry is intended to help with that.
One other CSD-N member attended in person and spoke, and another spoke by web connection. They emphasized the difficulty of living with our disorders.
Their remarks were well-received by the board.
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.
The SleepyHeadCentral blog posted a lovely article on CSD-N, featuring our infographic. SleepyHead Central covers all sleep disorders, but there have been a bunch of blog posts recently highlighting circadian rhythms.
Good to see some recognition from the AASM (American Association of Sleep Medicine) researchers of the difficulties many of us have complained about.
"The Circadian Sleep Disorders Network (www.circadiansleepdisorders.org), a nonprofit patient advocacy group, reports members' concerns regarding recognition of their conditions (even among sleep specialists), and related difficulties with access to care"
—Auger RR, Burgess HJ, Emens JS, Deriy LV, Sharkey KM, Do Evidence-Based Treatments for Circadian Rhythm Sleep-Wake Disorders Make the GRADE? Updated Guidelines Point to Need for More Clinical Research, Journal of Clinical Sleep Medicine, 11(10), 2015 (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4582047/)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.