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.
CSD-N Board member Rachel Amon hosted @WeAreDisabled on May 3 on Twitter. She explained DSPD and referred people to our website for more information. View the Twitter session here.
CSD-N board member Andrew Cowen gave a talk at the Orphan Drug Conference on April 28. He explained Non-24, and talked about the difficulty of obtaining Hetlioz and insurance coverage for it. You can view a recording here.
CSD-N board member Alexandra Wharton was interviewed on Vice News on March 15. She talked about her experience with DSPD, and the particular difficulty of shifting the clocks an hour ahead when we switched to daylight saving time the day before. Watch this segment on Youtube.
The Circadian Sleep Disorders Network (CSD-N) contributed to a white paper that was recently published in the prestigious journal SLEEP. Authored by leaders in the field of circadian medicine, this paper has the potential to influence the direction of research on circadian rhythm sleep-wake disorders (CRSWDs).
Workshop report. Circadian rhythm sleep-wake disorders: gaps and opportunities identifies gaps in the diagnosis and treatment of CRSWDs and defines areas of urgently needed research.
The paper presents the results from a workshop cosponsored by the Sleep Research Society (SRS) and the Society for Research on Biological Rhythms (SRBR). CSD-N contributed through our detailed Needed Research document, which is listed as Reference 16 in the white paper.
This review of the many gaps in our knowledge of CRSWDs is timely in light of the increased attention to circadian rhythms in many areas of medicine, and is so welcome to the many patients with these disorders for whom the current treatments fail.
We are generally pleased that many of the points we made in our Needed Research document were, in fact, included in this report. It clearly underscores the poor understanding of causes of these disorders, the absence of good diagnostic biomarkers, and the lack of effective treatment. It acknowledges inconsistent definitions of the disorders, and lack of good data on prevalence. Numerous other issues of concern to us have also been included.
Three points, however, we wish had been made more clearly: First, the need for patients' subjective improvement - not just laboratory measurements - in evaluating treatment success is mentioned, but only once. Second, while the white paper acknowledges the likelihood of different subtypes of CRSWDs with different underlying causes, and also acknowledges that efficacy of existing treatments is not well understood, it doesn't seem to clearly make the connection that the different subtypes likely require different treatments — and therefore any one treatment would exhibit low success rate when applied to the entire patient population. Finally, it doesn't seem to acknowledge that so many DSPWD patients are still tired, even while sleeping according to their body's internal clock.
CSD-N wishes to thank its patient community for their comments on social media, which informed our Needed Research document and from there the white paper. Thanks also to the workshop participants for including our viewpoint, and Dr Elizabeth B Klerman who contacted us and was our liaison to the workshop. Dr Klerman is also a member of the CSD-N medical advisory board.
In February 2020 CSD-N signed on to a letter urging Congress to support sleep community priorities, including the establishment of a new Chronic Disease Education and Awareness Program at the CDC (U.S. Centers for Disease Control and Prevention). Thanks to Julie Flygare at Project Sleep for circulating this letter.
As 2020 comes to a close, we are happy to report that the final FY21 Omnibus Bill that recently passed through the House and the Senate includes the new CDC Chronic Disease Education and Awareness Program (in Division H of the bill). Our advocacy worked!
"People living with sleep disorders often go years or decades without proper diagnoses," said Flygare. "Reducing these unacceptable delays-to-diagnosis is a huge priority for our organization and this new federal program is an important step to help people with under-recognized conditions find accurate diagnoses faster."
The new CDC Chronic Disease Education and Awareness program aims to expand public health education and awareness activities that help to improve surveillance, diagnosis, and proper treatment for chronic diseases. Congress included $1,500,000 in funding to establish a competitive grant program to expand and advance CDC's work with stakeholders on education, outreach, and public awareness activities for a variety of chronic diseases for which there is a clear disparity in public and professional awareness that are not already specified in the CDC's budget.
This approach would utilize a competitive grant process to strengthen the science base for prevention, education, and public health awareness for a variety of chronic diseases, such as sleep disorders, that do not currently have dedicated resources that would lead to meaningful patient outcomes.
The NIH (U.S. National Institutes of Health) Sleep Disorders Research Advisory Board (SDRAB) met in a Zoom session on Dec 3. Attending from CSD-N were past SDRAB member Susan Plawsky, whose term has expired; CSD-N board member Alexandra Wharton, who is applying for the vacant slot; newly elected CSD-N board member Andrew Cowen; CSD-N president Peter Mansbach; and possibly others.
Dr Marishka Brown has been appointed as the new director of the NIH National Center for Sleep Disorders Research (NCSDR). She replaces Dr Michael Twery, who held the post for many years. CSD-N wishes to thank Dr Twery for his support, including our successful efforts to get circadian rhythm sleep disorders listed on the NIH website. We look forward to working with Dr Brown, whom we know from previous meetings of the SDRAB.
NCSDR continues its efforts to get sleep acknowledged as the third fundamental pillar of health, in addition to nutrition and exercise. There were presentations illustrating the increase in sleep research in several areas. There was mention of the need to get students interested in sleep research earlier in their studies in order to increase the number of researchers.
The Sleep Disorders Research Plan, which the SDRAB has been working on for the past several years, is due out in 2021.
Andrew Cowen called in during the public comment period and gave a powerful statement on the need for more awareness of circadian rhythm sleep disorders, and better diagnosis.
It's time to elect directors to the CSD-N Board of Directors. We have one new volunteer, Andrew Cowen, who has been nominated by the board. Four current board members are also running for re-election: James Fadden, Karen Martin, Lynn McGovern, and Alexandra Wharton. Four other directors have terms which don't expire until next year.
Candidate statements will appear in the upcoming newsletter, which will also be posted online for members.
The board has also voted to expand to 9 directors. So we have 5 candidates for 5 open slots. Since they will all be elected, the board has voted to dispense with the formal balloting by the membership.
Per the Bylaws, the new director takes office Jan 15.
From the U.S. National Institutes of Health: "Rare disease patients and caregivers: How are you being impacted by the novel coronavirus pandemic? Please complete a 20-minute online research survey from home to share your experiences. This study is being conducted by the NIH's Rare Diseases Clinical Research Network (RDCRN). Your responses may help researchers understand the impacts of COVID-19 on the rare disease community. Survey closes Dec 15. Complete the survey or learn more at https://RareDiseasesNetwork.org/COVIDsurvey." (US residents only)
Daylight saving time: an American Academy of Sleep Medicine position statement . AASM (American Academy of Sleep Medicine) argues for not switching twice a year, and why year-round standard time is better than year-round daylight saving.
"DST is less well-aligned with intrinsic human circadian physiology, and it disrupts the natural seasonal adjustment of the human clock due to the effect of late-evening light on the circadian rhythm. DST results in more darkness in the morning hours, and more light in the evening hours. Both early morning darkness and light in the evening have a similar effect on circadian phase, causing the endogenous rhythm to shift to later in the day. There is evidence that the body clock does not adjust to DST even after several months. Permanent DST could therefore result in permanent phase delay...."
SRBR (Society for Research on Biological Rhythms) agrees: Why we should let the sun set on Daylight Saving Time. "People living on the western edges of time zones provide a stark example of how a small difference in the relationship between the timing of sunrise-sunset and clock time can affect population health. Individuals who live on the westward side of a time zone, where there is more sunlight in the evening, have a higher risk of poor health and shorter life expectancy compared to those who live on the eastern edge of a time zone, where the sun rises and sets earlier relative to the clock time."
For DSPD people it's a little easier to make a 2:00pm appointment on standard time. And light late in the evening in summer tends to delay one's schedule even later. But some dislike the early winter darkness.
A small change in a key component of our biological clocks lengthens the clock period, causing people to stay up late at night and sleep late in the morning. Read more in the news article, Scientists discover how a common mutation leads to 'night owl' sleep disorder (non-technical).
Julie Flygare and Project Sleep organized a virtual "Sleep Advocacy Day" forum spanning Oct 5 and 6. Circadian Sleep Disorders Network was to be represented by Jason Myatt and Lynn McGovern on Oct 5, and by Jason and Alexandra Wharton on the 6th. Unfortunately Jason was ill and could not attend.
Lynn reported on the talks presented the first day:
On the 5th of October, 2020, I attended the first day of the Sleep Advocacy Forum. The forum was very interesting, and this article will briefly cover some of the day's talks.Alexandra reported on the second day, which was mostly discussions:
The first talk was by Dr Janet He from the National Institute of Neurological Disorders and Stroke. Dr He's research focuses on sleep and circadian disorders. She spoke about medical trials and the particularly expensive nature of human trials. Dr He also spoke about funding streams for research.
Dr Kiley from the National Heart, Lung, and Blood Institute at the National Institutes of Health gave a fascinating talk on the relationship between sleep fragmentation, a healthy sleep score (which is a measure of sleep quality, sleep duration, and sleep schedule), and cardiac risk factors. In particular, he spoke about research that has demonstrated that high levels of sleep fragmentation and low sleep scores increase the risk of coronary heart disease. Interestingly, a good sleep score has been shown to modify risk in those who are genetically susceptible to cardiovascular disease.
Dr Kiley also spoke about how untreated sleep apnea is associated with a 70% increased risk for death in COVID-19 patients. Conversely, CPAP usage within the last year is associated with a lower risk of death.
Next up was medical advisor to CSD-N, Dr Phyllis Zee. Unsurprisingly, her talk was very relevant to our organisation. She spoke about her work as an advocate with the Society for Research on Biological Rhythms. Her talk covered the effect of altered circadian rhythms on Alzheimer's disease, cancer, insulin resistance, and diabetes. She also emphasized that circadian rhythm disorders are not as rare as we think. Unfortunately, Dr Zee had to leave after her talk, so I couldn't probe this issue further. I have personally long suspected that mild DSPD is much more common than is believed.
Another great talk was given by Dr Michael Grandner. He stated that sleep quality is affected by: "When we sleep, where we sleep, and with whom we sleep." Sleep quality does not stand alone, as it is embedded within one's overall life and place in society. His talk focused on the relationship between insufficient sleep/sleep disorders and minority status. The very first research paper on this issue was only published in 2000, so it's a relatively new area of research. He quoted Hale and Do's (2007) research that found that black people are more likely to be short/long sleepers. He also spoke about emerging research on this topic. Finally, Dr Grandner spoke about the very disturbing research which demonstrated that adverse childhood experiences (ACEs) can affect sleep for up to 50 years after the events.
Dr Ewart from the American Thoracic Society spoke next. His talk covered issues with Medicare's distribution of CPAPs. Specifically, Medicare will only cover a particular supplier and will withdraw payment for the CPAP if it is not used a minimum amount of times per billing period. They also monitor such devices remotely, and as such are the only medical device that is routinely monitored in this way.
Dr Malhotra spoke about his work with AASM. He posited that COVID-19 is currently the greatest challenge facing sleep medicine. The first problem is that many sleep centres are closed, and the second problem is that many patients do not wish to come to those that do remain open to patients. He echoed Dr Ewart's concerns about CPAP access. He also spoke about AASM's advocacy work. In particular, AASM currently advocate for: for the elimination of daylight saving time, state legislation to move school start times later in the mornings, and the decrease of sleep health disparities.
The day ended with a series of short talks by the various patient groups attending the Sleep Advocacy Forum.
The Sleep Advocacy Forum was excellent with 70+ attendees. I had the opportunity to represent us and speak about CRDs on the second day during the community intro and breakout sessions.
Graphic courtesy of H. D. Ushev, posted with permission.
A larger version of this graphic has a permanent home at
"Not surprisingly, during the pandemic, without the need to get up and go to school at a set time, most teenagers went to sleep about a half-hour later than before COVID.... Sixth graders went to sleep at a median time of 10 p.m., seventh and eighth graders at 11 p.m., ninth and tenth graders at midnight, and eleventh and twelfth graders at 12:30 a.m...
"More surprisingly is that without the need to wake up at a specific time, almost all of the teenagers in the survey woke up at 9 a.m. – giving middle schoolers nine hours of sleep and high schoolers eight hours."
Quoted from Teens Might Finally Get Enough Sleep with 9 a.m. LAUSD Start Time in (L.A.) Spectrum News, Aug 20, 2020.Archived News 2020
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.
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.
The first time you go to 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
Also available on the the Amazon Shopping app on your phone. How it works there:
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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