Dec 13, 2021
The National Center on Sleep Disorders Research, part of the U.S. National Institutes of Health (NIH), announces the release of the
2021 NIH Sleep Research Plan. This new research plan presents a comprehensive approach to addressing the critical research needs and opportunities in sleep and circadian biology.
The plan was developed with input from the public, scientific communities, the Sleep Disorders Research Advisory Board (SDRAB), the NIH Sleep Research Coordinating Committee, NIH leadership, and partners across the Federal government, with the goal of advancing sleep and circadian research that improves medicine, public health, and the safety of the nation.
Many thanks to Susan Plawsky for ably representing Circadian Sleep Disorders Network on the SDRAB through four years of painstaking work, despite all the bureaucratic wrangling over wording and the compromises required.
Tune in to NIH's LinkedIn Live Event on Thursday, December 16, 2021 beginning at Noon ET to ask questions about the new plan.
Nov 2021
Alexandra Wharton, CSD-N board member and social media liaison, gave an introduction to DSPD at Project Sleep's Sleep Advocacy Forum on Oct 18, 2021. The forum brought together a group of policy makers and sleep advocates to share information on timely topics from medical research to public health and patient care issues.
Alexandra gave an overview of Delayed Sleep Phase Disorder. You can view her talk here.
Nov 2021
There are four vacancies on the Board of Directors. Two incumbents, Samuel Bearg and Peter Mansbach, are running again. Two new people, Sabrina DeAngelis and Sarah Hazelwood, have also asked to run and have been nominated by the Board.
Since there are only four nominees for the four vacant slots, we do not need to hold a formal vote of the membership. The new board members will begin serving on the board on Jan 15, 2022.
Nov 24, 2021
Non-24-Hour Sleep-Wake Disorder (Non-24) is a serious disorder of the body's circadian system, in which a person's clock runs (generally) much longer than 24 hours and they are unable to entrain to a 24-hour daily cycle. Instead, their sleep time progresses later and later each day, going all the way around the clock. It is also called Free Running Disorder. Without proper treatment the person is unable to meet regular daily commitments and so, without suitable accommodations, unable to hold a normal job, so this is a real disability. And in many people the current treatments are ineffective.
Talk to someone about it! Raise awareness! Explain what it is, that it affects sighted as well as blind individuals, how it impacts people's lives, that it is physical and is reflected in people's biomarkers, and that treatment often does not work.
Oct 2021
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.
Aug 2021
CSD-N incorporated Aug 18, 2011, and has been going strong since.
Aug 2021
The Night Girl Finds a Day Boy - a true story about a person with extreme DSPD and a normal-time sleeper falling in love and making it work - is now available on Modern Love (Season 2 Episode 2) on Amazon Prime video.
The original text story, by Amanda Gefter, is behind a NYTimes paywall (with some free viewings) but is available in podcast form (no paywall).
There is a new interview with the author, "night girl" Amanda Gefter, but it's behind the NYTimes paywall (although you may get a free view, if you don't use NYTimes very often).
June 2021
Circadian Sleep Disorders Network is a signatory on the just released AASM position paper "Sleep is essential to health: An American Academy of Sleep Medicine position statement." Lots of good proposals and conclusions, including "Healthy sleep requires adequate sleep duration, appropriate timing, regularity, the absence of sleep disorders, and good quality..." [emphasis added].
June 2021
CSD-N President Peter Mansbach "attended" (virtually) the SLEEP2021 conference presented by AASM and SRS from June 10 - 13 . Some takeaways are described here.
June 2021
CSD-N board member Samuel Bearg was recently interviewed on Handi-Link about his CRD and CRDs in general. Check it out here. (Listen to the "modified" version, which corrected an error in our name.)
May 2021
One of the earliest members of CSD-N is working on his PhD and seeks people willing to be interviewed. He writes:
I am a PhD student at the University of Leeds seeking to recruit people with diverse sleeping times or diagnoses of a circadian rhythm sleep disorder to interview about the social and historical development of our knowledge about circadian rhythms and their disorders....The interviews will take up to one hour and be conducted online or by telephone at flexible times to suit participants. The interviews will broadly cover your experiences and understandings of sleep timing, the various ways in which sleep timing may be controlled and the role of sleep timing in society.
If you are interested in participating or have any questions, please read the attached information sheet or contact me at ssjnh@leeds.ac.uk.
This study has been reviewed and received a positive opinion from the Faculties of Business, Environment and Social Sciences Research Ethics Committee, 22nd March 2021, reference: AREA 20-075.
Thank you for your time,
Jonathan Hume
PhD Candidate
Centre for Disability Studies
University of Leeds
We urge you to contact him to be interviewed.
May 2021
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.
April 2021
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.
March 2021
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.
March 2021
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.
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