Write NSF to correct misinformation
Circadian Sleep Disorders Network
Editor's note: We have added a sample letter, and made a few minor wording changes, to the original version that was sent to members.

Webmaster's note July, 2013:
They have already fixed the most serious misinformation on Non-24 in sighted people, and have now added a section on DSPD.
Further changes in the Non-24 pages are under discussion. The emails from our members and others were instrumental in bringing about these changes. Thank you! Together we have a voice!



Please Write the
National Sleep Foundation


 

New NSF web site has harmful misinformation about N24

The National Sleep Foundation (NSF) has created a new set of web pages for Non-24-Hour Sleep Wake Disorder at non24.sleepfoundation.org/index.php. These are sponsored by Vanda Pharmaceuticals, who are developing a new drug, tasimelteon, for treating non-24 in blind patients.
 
I was shocked by the following sentences (on non24.sleepfoundation.org/depression.html, 2nd para):
"For sighted subjects, this pathway is likely functional, but patients are generally not exposed to an appropriate 24-h day-night cycle. As a result, their internal clocks become unsynchronized with the 24-hour norm. Therefore, N24HSWS is transient, reversible, and may be associated with a psychiatric disorder in sighted subjects, since the disorder is behaviorally induced in these cases." [emphasis mine]

In addition (on non24.sleepfoundation.org/facts_prevalence.html, 3rd para):
"People with N24HSWD have circadian rhythms that are not synchronized with the 24-hour day-night cycle, either through a failure of light to reach the SCN, as in total blindness, or due to inappropriate exposure to light-dark cycles, as with some sighted people." [emphasis mine]

All our lives we have been told we are just lazy, it's all in our mind, we're just not trying hard enough. And now the National Sleep Foundation is essentially saying the same thing.

Also, the entire series of pages seems to me to be written from the point of view that non-24s are keeping a normal 24 hour day, and feeling tired from time to time when they're out of sync. It does not acknowledge the many people who just can't sleep on a normal schedule and who therefore cannot function on a 24 hour day. And there's no mention of Circadian Sleep Disorders Network and no link to our website.
 

NSF has not yet corrected it

Peter Mansbach and James Fadden wrote to Kristin Jones, our contact at NSF, over three weeks ago to complain and to offer suggested replacements. She has been receptive and encouraging, but she does not have the authority to make the changes. She has passed on our comments to the appropriate people. But there have been no changes yet.

Peter has also contacted Vanda. They say their sponsorship was an unrestricted grant, and they had no hand in developing the text. We're seeking their support for the changes we want. They don't want to alienate prospective future customers.

NSF has also not included CRSDs

There is a drop-down list near the top of the NSF home page with various sleep disorders. But neither Circadian Rhythm Sleep Disorders, nor Delayed Sleep Phase Disorder, nor Non-24-Hour Sleep-Wake Disorder is on the list. Clicking on the items in this list takes you to a page on the selected disorder. So we'd need a page (or several) on CRSDs.

There is a separate page (actually 2 linked pages) also listing sleep disorders, at www.sleepfoundation.org/articles/sleep-disorders. Here too, neither Circadian Sleep Disorders, nor Delayed Sleep Phase Disorder, nor Non-24-Hour Sleep-Wake Disorder is on the list.

And nowhere do they link to the Circadian Sleep Disorders Network web site, www.circadiansleepdisorders.org/.

We have asked them to rectify these changes on several occasions, but they have not responded.

Please write them!

Please write the National Sleep Foundation to underscore your concerns about all these issues. You can write Kristin Jones at kjones@sleepfoundation.org. She has promised to forward emails to the people with authority. If enough people are upset enough, we will get action. And please copy csd-n-news@csd-n.org, so we get an idea of how many people wrote. We may also want to forward some of the letters to Vanda, to help persuade them to support these changes, so please do copy us.

Peter's suggested substitutions and James's support letter are copied below, in case you want to use any of this information in your letters. It is best if you use your own words. Some talking points:
  • The paragraphs (quote them [see above, in italics], identify page) are harmful and offensive to sighted people suffering from Non-24. What NSF is saying is untrue, and spreads misinformation that makes it more difficult for patients to get accommodations.
  • Many Non-24 patients are unable to adjust their schedule to a 24 hour day.
  • On the home page dropdown list, add circadian rhythm sleep disorders (or add DSPS and Non-24). And add a destination page for that to link to.
  • On the sleep disorders page, www.sleepfoundation.org/articles/sleep-disorders, add circadian rhythm sleep disorders (or add DSPS and Non-24)
  • Mention Circadian Sleep Disorders Network, and tell them to add a link to our page www.circadiansleepdisorders.org

We have also asked people on other venues, such as the Niteowl List and our Facebook page, to write letters too.



Sample letter to NSF

Send to: kjones@sleepfoundation.org
CC: csd-n-news@csd-n.org
Subject: Misinformation on the NSF Website

There is no support in the medical literature for this statement on the NSF web site (non24.sleepfoundation.org/depression.html, 2nd paragraph): "For sighted subjects, this pathway is likely functional, but patients are generally not exposed to an appropriate 24-h day-night cycle. As a result, their internal clocks become unsynchronized with the 24-hour norm. Therefore, N24HSWS is transient, reversible, and may be associated with a psychiatric disorder in sighted subjects, since the disorder is behaviorally induced in these cases."

A shorter but similar statement on non24.sleepfoundation.org/facts_prevalence.html, 3rd paragraph, is equally incorrect.

Comments such as these are scientifically inaccurate, highly offensive and do considerable harm to sighted persons with N24 by perpetuating the idea that sufferers are mentally ill or cause their disorder by abnormal behavior. This perpetuates misconceptions that are very harmful to sighed persons with N24.

All our lives we have been told we are just lazy, it's all in our mind, we're just not trying hard enough. And now the National Sleep Foundation is essentially saying the same thing.

Replace these statements. I understand Peter Mansbach has suggested replacements.

Also, the entire series of pages on Non-24 seems to me to be written from the point of view that Non-24s are keeping a normal 24 hour day, and feeling tired from time to time when they're out of sync. It does not acknowledge the many people who just can't sleep on a normal schedule at all and who therefore cannot function on a 24 hour day. And there's no mention of Circadian Sleep Disorders Network and no link to their website which has additional helpful information.

Regarding your main web site, there is a drop-down list near the top of the NSF home page with various sleep disorders. But neither Circadian Rhythm Sleep Disorders, nor Delayed Sleep Phase Disorder, nor Non-24-Hour Sleep-Wake Disorder is on the list. Clicking on the items in this list takes you to a page on the selected disorder. So you also need a page (or several) on Circadian Rhythm Sleep Disorders.

There is a separate page (actually 2 linked pages) also listing sleep disorders, at www.sleepfoundation.org/articles/sleep-disorders. Here too, neither Circadian Sleep Disorders, nor Delayed Sleep Phase Disorder, nor Non-24-Hour Sleep-Wake Disorder is on the list.

The NSF is a well-known and - so far - a reputable organization. Please don't compromise your reputation by posting misinformation.

Sincerely,
<your name>



Suggested substitutions

To replace the first group of sentences quoted earlier:
"For sighted subjects, several mechanisms for N24HSWS have been suggested, including deficiencies in the ipRGC cells of the retina, under- or over-sensitivity of the eye to light, differences in the intrinsic circadian feedback loop, problems with melatonin production, etc. This is a serious disorder, extremely disruptive of people's lives, and it is not known how many people suffer from it."

And instead of the second group:
"People with N24HSWD have circadian rhythms that are not synchronized with the 24-hour day-night cycle, either through a failure of light to reach the SCN, as in total blindness, or due to various other reasons in sighted people."



James's letter to NSF

There is no support in the medical literature for this statement on the NSF web site: "For sighted subjects, this pathway is likely functional, but patients are generally not exposed to an appropriate 24-h day-night cycle. As a result, their internal clocks become unsynchronized with the 24-hour norm. Therefore, N24HSWS is transient, reversible, and may be associated with a psychiatric disorder in sighted subjects, since the disorder is behaviorally induced in these cases."

Uchiyama et al. studied 57 cases of sighted person with N24 and found that 72% (41/57) did not have any history of psychiatric disorder prior to development of N24. 34% of N24 patients developed depression *after* and as a consequence of their N24. There was no evidence that in any of these patient that the N24 disorder was "transient" or "reversible". [1].

Numerous studies have demonstrated biological abnormalities in sighted patients with N24 that are not consistent with a psychiatric or behavioral causation [2,3,4,5,6,7]. The vast majority of published cases describe an enduring and not transient or reversible course.

My own case of N24 was extensively studied for over 3 years by Drs. Thomas Wehr and Dan Oren of the National Institutes of Health. In the paper they published on my case they stated [8]:

"Diagnostic SCID of Axis I DSM-III-R disorders showed no evidence of any non-sleep-wake disorder (Spitzer et aI., 1989). Clinical evaluation by a psychiatrist provided no evidence of a personality disorder." The patient was described as "having a pleasant and engaging personality."

Since my disorder has been present for over 30 years one could hardly describe it as "transient". While it does respond partially to treatment I relapse immediately if treatment is disrupted so the condition cannot be called "reversible". The condition has imposed a terrible burden on my life.

I believe my case is typical of those of sighted persons with N24.

Comments such as you present are scientifically inaccurate, highly offensive and do considerable harm to sighted persons with N24 by perpetuating the idea that sufferers are mentally ill or cause their disorder by abnormal behavior. This perpetuates misconceptions that are very harmful to sighed persons with N24.

I strongly urge you to make the changes in your web page that Peter Mansbach has suggested on behalf of the Circadian Sleep Disorders Network.

REFERENCES

1. Hayakawa T, Uchiyama M, Kamei Y, et al.
Clinical analyses of sighted patients with non-24-h sleep-wake syndrome: a study of 57 consecutively diagnosed cases. Sleep 2005;28(8):949

2. Boivin DB, James FO, Santo JB, Caliyurt O, Chalk C. Non-24-hour sleep-wake syndrome following a car accident. Neurology. 2003 Jun 10;60(11):1841-3.

3. McArthur AJ, Lewy AJ, Sack RL.Non-24-hour sleep-wake syndrome in a sighted man: circadian rhythm studies and efficacy of melatonin treatment.
Sleep. 1996 Sep;19(7):544-53.

4. Hashimoto S, Nakamura K, Honma S, Honma K.
Free-running of plasma melatonin rhythm prior to full manifestation of a
non-24 hour sleep-wake syndrome.
Psychiatry Clin Neurosci. 1998 Apr;52(2):264-5.

5. Takimoto M, Hamada A, Tomoda A, Ohdo S, Ohmura T, Sakato H, Kawatani J, Jodoi T, Nakagawa H, Terazono H, Koyanagi S, Higuchi S, Kimura M, Tukikawa H, Irie S, Saito H, Miike T. Daily expression of clock genes in whole blood cells in healthy subjects and a patient with circadian rhythm sleep disorder. Am J Physiol Regul Integr Comp Physiol. 2005 Nov;289(5):R1273-9.
Epub 2005 Jun 16.

6. Nakamura K, Hashimoto S, Honma S, Honma K, Tagawa Y. A sighted man with non-24-hour sleep-wake syndrome shows damped plasma melatonin rhythm.
Psychiatry Clin Neurosci. 1997 Jun;51(3):115-9.

7. Uchiyama M, Shibui K, Hayakawa T, Kamei Y, Ebisawa T, Tagaya H, Okawa M, Takahashi K. Larger phase angle between sleep propensity and melatonin rhythms in sighted humans with non-24-hour sleep-wake syndrome. Sleep. 2002 Feb 1;25(1):83-8.

8. Oren DA, Giesen HA, Wehr TA. Restoration of detectable melatonin after entrainment to a 24-hour schedule in a 'free-running' man.
Psychoneuroendocrinology. 1997 Jan;22(1):39-52.



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