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.
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
Circadian Sleep Disorders Network will be holding elections for its Board of Directors, and is seeking some new faces. Requirements are described in www.circadiansleepdisorders.org/docs/ReqDir.php. Meetings are held by online forum, so you can log in at any time of day to read what's been posted and post your replies. Meetings do continue for two months or more, though often not very actively.
If you're interested, please let us know soon (latest Nov 10), following the instructions at the end of the above document. Directors start serving January 15, 2021. Terms generally run for two years.
We are also often looking for other volunteers willing to help. These can be board members but do not have to be. If you're interested in volunteering, please let us know.
"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.
We have been asked to post this information:
Rare Diagnostics is an online rare disease-specific symptom checker for undiagnosed patients, which they can access 100% free of charge. This provides patients with personalized information about relevant diseases and connects them to online communities of patients with the same symptoms.
Rare Diagnostics believes that connecting undiagnosed patients with patient communities is extremely valuable throughout their diagnostic process. They also realize that patients may have difficulty finding the relevant patient organizations, and Rare Diagnostics could be a solution for this.
They are looking to increase the diagnostic accuracy of their software, and to accomplish this they have built an online form for diagnosed rare disease patients to share their experiences.
They have assured us that the data they collect will be anonymized. However, Circadian Sleep Disorders Network cannot independently verify the security of your information.
You can learn more about their effort, and participate in their survey, at
Alexandra Wharton, CSD-N Board Member and Social Media Liaison, presented a poster about circadian rhythm disorders at the Society for Research on Biological Rhythms (SRBR) Biennial Meeting in June. SRBR is dedicated to advancing rigorous, peer-reviewed science and policies related to sleep and circadian biology.
Attended by 700 chronobiologists and industry experts from 40 countries, the virtual conference covered the latest research about the mechanisms and functions underlying the entrainment and expression of biological rhythms. Session topics included sleep-wake cycles, hormonal and metabolic rhythms, molecular basis of circadian timing and the identification of genes underlying rhythmicity.
During CSD-N's poster session and Q&A, Alexandra outlined what Delayed Sleep Phase Disorder and Non-24 are, highlighted CSD-N's patient-powered survey and explained that DSPD has high co-morbidity with ADHD and other mental health conditions.
She discussed the challenges Circadian Rhythm Disorder (CRD) sufferers experience including lack of proper diagnosis, treatment and accommodations at school and work. She stressed that genetic and biomarker discoveries are critical for CRD patient advocacy as they highlight the physiological differences in people with these disorders, compared with typical sleepers.
Many thanks to Susan Plawsky for representing the circadian disordered community on the (U.S.) NIH Sleep Disorders Research Advisory Board (SDRAB) for the past four years. Thursday, June 11, was her last meeting as patient representative on that board. Two other members of our community have applied for the vacant slot.
The SDRAB is charged with preparing the Sleep Disorders Research Plan. They have been working on creating this plan for the past four years, and it is currently waiting on review by the various institutes within NIH and other government departments before being released.
The meeting was of course virtual, in these pandemic times. Among the attendees, in addition to Susan, were CSD-N president Peter Mansbach, board member Alexandra Wharton, and member Alexandra Escalera. There were talks on hypersomnia/narcolepsy by Dr Thomas E Scammell and on lighting (in regard to sleep and circadian rhythms) by Dr Mariana G Figueiro. Peter asked Dr Scammell about overlap between DSPD and narcolepsy, but Dr Scammell has not seen this in his practice. Alexandra Escalera also spoke about her struggles as a DSPD patient.
As (previously described), SRS/AASM (Sleep Research Society/American Academy of Sleep Medicine) and SRBR (Society for Research on Biological Rhythms) are preparing a White Paper on needed research in circadian rhythms, and invited CSD-N to provide input from the patient perspective. We did so last June, in our Needed Research document.
In March we received a draft of the White Paper, and again James Fadden, Peter Mansbach, and Susan Plawsky sent our comments and suggested revisions to them. The White Paper has been further edited, was approved by the SRS board, and has been submitted to the journal SLEEP.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.
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
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 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
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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