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.
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.
Four of our board members recently completed an online Coursera course, Circadian Clocks: How Rhythms Structure Life. The six lectures were delivered by Dr Till Roenneberg and Dr Martha Merrow, and covered circadian rhythms in animals as well as humans, and the molecular processes in the basic cellular clock. Board members completing the course are James Fadden, Beth Macdonald, Peter Mansbach, and Kasha Oelke. Three passed "with distinction"; the fourth slept through a submission deadline, but passed anyway.
Circadian Sleep Disorders Network (CSD-N) has asked for people to represent the circadian community on the NIH Sleep Disorders Research Advisory Board (SDRAB). Several people have applied. The CSD-N Board has submitted a supporting letter. NIH is reviewing the applications, but has advised us that it can take six months or more before a decision is made.
Peter Mansbach (CSD-N president) attended the afternoon portion of the NIH (U.S. National Institutes of Health) SDRAB (Sleep Disorders Research Advisory Board) meeting on Apr 29. The public had a chance to speak, and he took that opportunity to point out rather strongly that we had been urging NIH to add Circadian Rhythm Sleep Disorders information to its website for the past three years, but it still hasn't happened. Dr Phyllis Zee, who is on our CSD-N Medical Advisory Board, supported him and offered to write the articles. Several other members of the SDRAB also voiced support.
He also said that the circadian rhythm community should get a seat on the board. The number of seats is established by Congress, so they cannot add a new one. But it was suggested that they rotate among the sleep communities instead of always being sleep apnea, restless legs, narcolepsy, and insomnia as in the past.
He also took the opportunity (in response to Monday and Tuesday's workshop on sleep biomarkers) to underscore the importance of circadian rhythm biomarkers to our circadian-disordered community. A simpler test to determine our internal phase (what time of day our body thinks it is) would simplify diagnosis, and would help the doctor in determining what time of day to start treatments such as light and melatonin. It would also help with primary care doctors who are not familiar with - or do not believe in - circadian disorders, since such a test would alert them immediately to the need for a sleep specialist rather than just a sleeping pill.
The CSD-N board of directors has voted to add our name to the list of organizations supporting a PSI initiative:
PSI (Patient Services Inc) is a national non-profit patient assistance organization that utilizes donations to subsidize the cost of health insurance premiums as well as copayments and coinsurance. Insurance Providers in several marketplaces are now prohibiting the acceptance of third party premium payments. PSI is working to introduce legislation that would require Federal and State Marketplace plans to accept third party assistance from nonprofit organizations, so that patients with expensive rare and chronic conditions will not have interruptions in their treatments and be left to again fend for themselves. PSI is working in coalition with many groups to achieve this. More details are in this document.
On Apr 22 our president, Peter Mansbach, attended a Congressional Reception at the Rayburn House Office Building (Washington, DC) in support of this effort. Two congressmen spoke: Rep David Jolly (R-FL) and Rep Leonard Lance (R-NJ). Both are in favor of helping people with rare diseases get increased access to the care they need. Rep Jolly is speaking in the photo.
Please welcome Kasha Oelke as our new secretary, elected by the board to fill the vacant officer position. Kasha continues to be our Twitter and LinkedIn admin as well. Thank you for the work you do for us.
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 firstname.lastname@example.org, and please copy CSD-N at email@example.com, 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.
Once you've signed up for the list, you post by sending an email to firstname.lastname@example.org. 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.
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.
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.
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.
We're still getting started!
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.