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 doctor and their general doctor 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 proud to join the online N24 community in celebration of N24 Awareness day. November 24th has been chosen as the annual day to spread awareness of Non-24-Hour Sleep-Wake Cycle Disorder, a serious circadian rhythm disorder. People with N24 and their allies are encouraged to blog, post, draw, compose, or discuss this condition and how it impacts their lives.
This year's theme is Think Zebras. This comes from a saying that doctors are taught: "If you hear hoof beats think horses, not zebras." When faced with symptoms, try to think of the more common causes first and not the rare ones. The patient with cough, fever and lassitude is more likely have the flu than, say, Q fever.
While that's a reasonable rule, if followed too rigidly it leaves people with rare disorders misdiagnosed or undiagnosed. This is often the case with N24. People presenting with the symptoms of N24 are often diagnosed with more common conditions such as insomnia or depression and treated accordingly, usually with bad results. Or, in many cases, their symptoms are not believed or left as a mystery.
This is particularly unfortunate in the case of N24 because it is usually not a hard condition to diagnose as long as you look for it. Diagnosis generally does not require laboratory tests or invasive procedures. In most cases all that is needed is for a patient to keep a sleep log or chart for 2-4 weeks. The N24 pattern is nearly always distinctive enough that a simple look at the sleep chart is sufficient for diagnosis. In the occasional ambiguous or confusing case a more detailed interview, or tests for melatonin or cortisol, or monitoring of activity rhythms or body temperature can settle the issue.
But the diagnosis can never be made if the doctor in question does not think of it as a possibility. Hence the phrase Think Zebras. If someone complains of symptoms of insomnia or daytime sleepiness, particularly if it seems to follow an unusual pattern, consider the possibility of N24. If you are the one with these symptoms keep a sleep chart, or if you are a heath care provider, suggest that your patient do so. Not only will that help diagnose N24 if present, but a sleep chart can assist in the diagnosis of DSPS, ISWD (Irregular Sleep-Wake Cycle Disorder), Hypersomnia and other conditions.
Misdiagnosis of N24 can have serious consequences. Not only is the true diagnosis missed, but treatments can be given which are not only unhelpful but incur serious side effects. Some antidepressants can even make circadian disorders worse. In extreme cases patients have been subjected to prolonged psychiatric hospitalization before their disorder was correctly diagnosed.
A proper diagnosis of N24 is usually welcomed as better than a mysterious set of symptoms. Proper diagnosis can lead to either treatment (which works in some cases but not all) or to the provision of accommodations that may make it easier for the person with N24 to function in society.
Awareness of N24 has improved somewhat in recent years, at least in the US, due to radio and television ads for Hetlioz, a drug approved for the treatment of N24 in blind patients. Blind patients, who for many years had suffered from serious sleep complaints without any recognition or help are now somewhat more likely to be diagnosed and treated (although treatment is not 100% successful.)
However the recognition of blind N24 has had an unfortunate effect on sighted patients who are sometimes told "You can't have N24, that only happens to blind people." So awareness of sighted N24 has to catch up.
In the case of totally blind persons (those without any light perception), N24 is so common that one should almost assume it is present until proven otherwise. Well over 50% of totally blind persons have N24. In the totally blind population N24 is not a zebra, it is the norm.
In the case of sighted persons, N24 is a rare disease, a zebra. But in a planet of 7 billion people a so-called rare disease can amount to a lot of people. Zebras may be rare compared to horses, but there are about 750,000 zebras in the world. We don't know how many N24s there are (in itself a pressing need for research), but we are out there. Diagnosis, treatment and/or accommodations all depend on awareness and recognition.
So remember, Think Zebras!
Elections for the Board of Directors of Circadian Sleep Disorders Network will be held from Dec 1 through Dec 15. CSD-N members in good standing (i.e. who have paid their dues for CY 2015 or 2016) should receive ballots around Dec 1. Board members serve two-year terms, which are staggered, so half the board is elected every year. There are four slots to be filled.
Three incumbent board members are running again: Peter Mansbach, the current president; Asli Kumcu, and Beth Macdonald. Two new volunteers have been nominated: Eric Oyen and Lily Style. Write-ups submitted by the candidates will be published in the upcoming newsletter, and will also appear on the ballots.
Please welcome Valerie S Johnson, the new secretary of CSD-N. The Board of Directors has appointed Valerie to fill that office after the previous secretary resigned. The Board also appointed Valerie to serve on the board to fill the remainder of the term of the previous secretary, who also resigned her board position.
Thanks to Susan Plawsky for representing Circadian Rhythm Sleep Disorders at the Oct 9 meeting of the NIH Sleep Disorders Research Advisory Board (SDRAB). Susan was formerly on the Board of Directors of the Circadian Sleep Disorders Network.
She participated in the SDRAB meeting as an "ad hoc" member of the SDRAB. The process for selecting an official circadian member of the SDRAB is ongoing, but in the meantime we have a representative of the circadian disorders community participating on the board. The SDRAB will be revising the NIH Sleep Disorders Research Plan.
Oct 18 - 24, 2015, is Invisible Disabilities Week, sponsored by the Invisible Disabilities Association. Details available on their website, www.invisibledisabilities.org/, Facebook, or Twitter (#InvisibleDisabilitiesWeek).
James Fadden, our vice president, has written up the arguments supporting our concern that chronotherapy (delaying the clock) may lead to Non-24-Hour Sleep-Wake Disorder. www.circadiansleepdisorders.org/info/N24chrono.php.
We've created a new calculator, that predicts both wake times and sleep times into the future, for people with non-24 with a consistent delay. It's at www.circadiansleepdisorders.org/info/N24calc.php.
Let us know (
) immediately if there are any errors. Suggestions for improvements are also welcome. (Note: the third-party calculator we previously linked to had some serious bugs)
Find a Doctor! Circadian Sleep Disorders Network is now hosting the "Find a Doctor" page, a list of doctors that patients with DSPD or Non-24 found knowledgeable and helpful. www.circadiansleepdisorders.org/info/doctors.php.
The information was originally assembled in a wiki by several of our members, from comments sent in by patients. CSD-N was invited to take over maintenance of this page. We believe this can be a useful resource for people looking for a doctor knowledgeable about DSPD and Non-24.
Note that we simply post recommendations we receive from patients. We do not have first-hand knowledge of these doctors, and cannot be held responsible for bad recommendations or errors in posted information.
Let us know if you have additional doctors whom you feel are knowledgeable and helpful regarding CRDs.
Scientific American Mind has an excellent article, Out of Sync, in its Sept/Oct 2015 issue. It covers DSPD and Non-24, although much of the article is about Sparrow Rose Jones and her struggle with Non-24. Circadian Sleep Disorders Network was contacted for information and references that provided background for this article.
Quoting from the article:
"Honestly, if you ask me, I would prefer to have heart failure than a non-24-hour sleep-wake-cycle disorder," says Robert J. Thomas, a sleep medicine doctor at Beth Israel Deaconess Medical Center in Boston who specializes in circadian disorders. "That's how badly these patients suffer."Dr Thomas is on the Medical Advisory Board of Circadian Sleep Disorders Network.
Vanda Pharmaceuticals Inc. announced (July 7) that the European Commission approved HETLIOZ® (tasimelteon) for the treatment of Non-24-Hour Sleep-Wake Disorder in totally blind adults in the European Union (EU).
Note: Circadian Sleep Disorders Network is not in any way affiliated with Vanda Pharmaceuticals Inc.
Background: In Jan 2014 Hetlioz (Vanda's brand name for tasimelteon) received FDA approval for non-24. The FDA-approved prescribing information says simply HETLIOZ is indicated for the treatment of Non-24-Hour Sleep-Wake Disorder (Non-24). There is no limitation to blind people. In October 2014 the FDA clarified its news release approving the drug by eliminating the restriction to blind people, thus making it easier for sighted non-24s to get insurance coverage for this expensive drug.
Now (June 2015) Public Citizen has filed a petition with the FDA requesting that the approval and prescribing information be limited to blind patients without light perception, since it was never tested on sighted people. They also request additional safety information.
Note: Circadian Sleep Disorders Network is not in any way affiliated with Vanda Pharmaceuticals Inc. or Public Citizen.
Our Non-24 Question and Answer document is now available in Spanish, too. Thanks to member Maggie G for doing the translation, and Lo Bellver, a native Spanish speaker, for reviewing it!
A Spanish translation of the DSPS Q&A was posted recently as well.
If any of you has the linguistic expertise to translate our documents or web pages into Spanish or any other language, please do so. It can help raise awareness in non-English-speaking countries, and provide material for people with circadian rhythm sleep disorders to pass on to their doctors, family, and employers. Send submissions to .
NIH has asked stakeholders to participate in their Strategic Visioning Survey, to gather ideas for areas requiring (and ripe for) future research and to determine the level of interest. The Sleep Research Society (SRS) contributed a number of entries for sleep research, and CSD-N members added two more. Preliminary voting ended May 15, 2015. These entries are being reviewed, revised, and consolidated by NIH and its advisory boards. Public comments and votes will again be solicited, on the revised entries, from July 1 - Aug 15.
The public forum is at nhlbistrategicvisioning.ideascale.com/. You can see all the sleep-related entries by clicking on Sleep in the right hand column, or by searching for Sleep in the search box at the top. The entries by CSD-N members are:
Improve ineffective treatments for circadian rhythm disorders
Elucidate the different causes of circadian disorders, and tailor the treatment to the cause.
CSD-N alerted its current and recent members of the opportunity to vote.
The journal Sleep Review has just published an article on Non-24 by our vice president, James Fadden. The web version is up now. A print edition and a digital edition (pdf) are expected soon. Thanks, James, for putting in the work on this, obviously a significant effort.
Circadian Sleep Disorders Network has submitted its comments to AASM on their draft Clinical Practice Guideline for the Treatment of Intrinsic Circadian Rhythm Sleep-Wake Disorders. A number of our Board members contributed to these comments.
We would have preferred more time for discussion, but we wanted to submit what we had by the May 12 deadline, in order to raise some of our concerns and be part of the discussion.
NIH has still not included DSPD or Non-24 on their website!
The U.S. National Institutes of Health (NIH) has a number of web pages which talk about sleep disorders. In all these pages we see sleep apnea, narcolepsy, and restless legs; but we do not see any Circadian Rhythm Sleep Disorders - no Delayed Sleep Phase Disorder, no Non-24-Hour Sleep-Wake Disorder. It's no wonder people haven't heard of these disorders, and many doctors still don't recognize how serious they are....
Instructions and sample email are at www.circadiansleepdisorders.org/docs/campaigns/NIHWeb.php . Send email to email@example.com, and please copy CSD-N at firstname.lastname@example.org, so we can follow up, possibly including contacting higher ups.
I received this email from the NIH NHLBI Health Information Center in response to the above campaign. It represents good progress. Dr Twery took action in response to our emails by raising the issue with the Information Center. He passed the emails on to them, and they are aware of our issues. He did advise me that it's a slow process, and will take a long time. In my opinion, it would still help if more people wrote to him, since we are competing for very limited funds. Together we have a voice! Thank you.Archived News 2015
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 email@example.com. 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.
Our brochure is geared to the general public, to introduce 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 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:
|DSPS 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|
We also have a one page Basic Fact Sheet that introduces DSPS and Non-24 to people who don't know about them. It's a quick and easy read, just the basics.
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 select a charity. Please enter Circadian Sleep Disorders Network. 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 our first contribution check 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.
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.