N24 Awareness Day 2015 or “How I spent my blogging vacation.”

24 November 2015 at 06:01 | Posted in Circadian rhythm, N24 | 4 Comments

10 years ago my co-blogger Delayed2Sleep started this blog to bring awareness of Delayed Sleep Phase Syndrome. I joined as co-blogger 5 years ago under the name LivingWithN24. We both have continued to blog about issues affecting people with both DSPS and Non-24-Hour Sleep-Wake Cycle Disorder (N24).

I have been very gratified at the number of people online who have told us how this blog has helped them.  For example several people have told me that the post on Charting the Course of N24 helped them make a sleep chart and get a diagnosis.  Others have said that the Melatonin: Less is Sometimes More post has helped them find a dose that finally helps their sleep cycle.

Today is N24 Awareness Day.  It is a day set aside by the online N24 community to help spread awareness of this condition.  This is the third annual N24 Day.

https://n24day.wordpress.com/

In going online at the DSPS blog to write up something for today, I realized I had not posted anything here since last N24 Day.  I had a twinge of guilt, but that soon went away.  I may not have blogged much this year but I have done quite a lot this year concerning N24 and circadian disorders, some of it on my own and some as Vice-President of the Circadian Sleep Disorders Network.

I hope to blog here more in the future but in the meanwhile I thought I’d use this post to update the readers on what I have been doing in the world of N24 and circadian disorders generally.  Some of the readers may already know about this, but many may not and for them I have a lot of useful links and information to share.

But first a word about N24 Awareness Day.  The theme for this year is “Think Zebras!”  This comes from a saying taught to doctors “When you hear hoof beats, think horses, not Zebras.”  This means when faced with symptoms look for a common cause not a rare one.  The patient with a cough, fever and muscle aches is more likely to have flu than Q fever.

But this approach leaves people with rare disorders out in the cold.  Those of us with N24 truly are Zebras, and diagnosticians need to keep that in mind.  I have said more about this in my post on the CSD-N site, so rather than repeat myself I will give you a link (and while you are there consider joining.  It is a worthy cause.)

http://www.circadiansleepdisorders.org/info/N24zebras.php

So what else has happened in the world of N24 since the last N24 Awareness Day?  Well a few things…

I was honored this year to be asked to write an article on N24 for the journal Sleep Review.  I should thank Ed Grandi for connecting us, and Sree Roy, the Editor of Sleep Review, for her hard work.  The article is called “What You Need to Know about Non-24”.  It is published online and in digital and paper formats.

http://www.sleepreviewmag.com/2015/05/need-know-non-24/

http://alliedweb.s3.amazonaws.com/sleeprev/diged/201508/html5/index.html

I have been very gratified by the reception of the article by both patients and health professionals.   A friend recently told me it turned up in the waiting room of her sleep clinic.  So word is getting around about N24.

(This was my second formal article on N24.  The first, which I don’t think I have linked to on this blog, is a report on N24 for the National Organization of Rare Disorders, which I co-authored with Dr. Katherine Sharkey a couple of years ago: http://rarediseases.org/rare-diseases/non-24-hour-sleep-wake-disorder/)

Another high point of the year was participating in an online course offered by Coursera called Circadian Clocks – How Rhythms Structure Life.   It was taught by two eminent circadian researchers, Martha Merrow and Til Roenneberg of Ludwig-Maximilians-Universität München. I am not sure if the course will be offered again, but if you have a serious interest in circadian rhythms I highly recommend it.

https://www.coursera.org/course/circaclock

Finally, another major event this year was the publication of new guidelines for the treatment of circadian disorders by the American Academy of Sleep Medicine.

http://www.aasmnet.org/practiceparameters.aspx?cid=116

A preliminary version of the guidelines was released earlier and interested parties were asked to comment.  The deadline for comments was very tight.  CSD-N submitted comments on the guidelines.  In addition to helping compose the CSD-N comments I also submitted additional comments of my own which we did not have time to incorporate into the official CSD-N comments.

The most important aspect of the AASM guidelines — both their strength and weakness — is that they are based on a strict interpretation of the concept of evidence-based medicine.  According to this approach only treatments which have been subjected to controlled clinical trials are given a recommendation.  And clinical trials have to meet a number of strict criteria to be counted.

This is often a useful constraint.  It avoids the recommendation of treatments which are ineffective.  It is particularly useful in the case of common disorders where clinical trials can be organized. (To give an example from personal experience, I recently suffered a bout of diverticulitis.  Antibiotics are often prescribed for this condition but at least 5 controlled trials have demonstrated that they make absolutely no difference in outcome.)

However, in the case of rare disorders such as N24, this restriction can be both a blessing and a curse.  Given the rarity of sighted N24s there are very few clinical trials, and those that have been done did not meet the criteria of the AASM.  Thus the guidelines give “no recommendation” for any treatment of sighted N24.   For N24 in the blind, melatonin agonists are given a “weak for” recommendation.

The good side of this is it amply demonstrates the urgent need for more studies of treatments for N24, particularly in sighted patients.  It is intolerable that there is no validated treatment for such a devastating disorder.

The bad side of this approach is that it discounts evidence such as case reports of the efficacy (albeit partial and with limitations) of treatments for sighted N24, in particular light/dark therapy or combinations of light/dark therapy with melatonin.  In the absence of clinical trials for a rare disorder, case reports may be better than no evidence at all.  Nevertheless it is true that in the absence of controlled trials we don’t know how effective such treatments are for sighted N24s as a whole. This is an issue I may discuss more in the future.

So that has been my past year of involvement with N24 awareness.  In summary, there is more attention being paid to this condition.  But we still have a long way to go.  We need better understanding of the underlying biology of N24 — which is still poorly understood — and we need validated treatments.

— LivingWithN24 (James Fadden)