Thursday, 25 April 2013

An open letter to America's "National Sleep Foundation".

Update! The NSF (@sleepfoundation) has been in touch on Twitter and have acknowledged the inaccuracies and have apologised. They are in the process of updating their page. Kudos and thanks to them for replying to me. It took guts and I'm impressed. I'll remove links and replace them with screen-grabs when I wake up. The general point about misinformation, blaming and "it's all in your head" still stands, so the post will remain.

PS Suck on that, troll.

Hello, NSF.

Yesterday, I was informed of a section of your website by an email from the Circadian Sleep Disorders Netowrk. As I perused, I had a rather visceral reaction. I started to feel sick, my hands started to shake, I felt like I was being chocked and rage-filled tears. I'm still angry and I'm still upset.

As someone resident in the UK, I'm relatively protected from your inept ministrations, no doubt guided by Vanda Pharmaceuticals (although they're denying responsibility, they're fooling no one). Your actions, however, are going to actively harm my life and the lives quite a few others with whom I share a bond of torment.

I'm telling you this not for melodrama, but as an inevitably futile attempt to educate you -  you bloody well need it, as I'll show - but to try and show you how damaging what you've done is, why you need to fix it now, and how.

The Internet is a beautiful thing. It allows people access to information they otherwise could never find, either due to making that information incredibly available (e.g. Wikipedia's myriad links per article) or providing access to information that people would otherwise be priced out of, such as medical information. You even acknowledge this yourself, saying that many people with CRDs will have researched them on the Internet first.

However, this is a mixed blessing. I've had the privilege to have had access to the Internet for a very long time, and to receive an excellent education, including an MSc from a Russel Group University; an argued equivalent of your Ivy League. I have the education, experience and knowledge to know when I'm dealing with, for want of a better word, bullshit online. In particular, from my studies, I have become well versed in "psychological medicine" bullshit.

It saddens me to say that your page on N24, which I'm loathe to link to yet feel duty-bound to do so to enable people to make up their own mind, is bullshit. The link is here, but I highly recommend N24s or anyone experiencing a sleep disorder avoids it - I'd even suggest it's worthy of a trigger warning.

I do not accuse you of the "lying" variety of bullshit, to be clear. I accuse you of Harry Frankfurt's bullshit:

[The bullshitter's] eye is not on the facts at all, as the eyes of the honest man(sic) and of the liar are, except insofar as they may be pertinent to his interest in getting away with what he says. He does not care whether the things he says describe reality correctly. He just picks them out, or makes them up, to suit his purpose.

There are people that lack the privileges I do, and they will come across your website of misinformation. This misinformation will be used as a stick to beat sighted N24s like myself. It will be accessed by medical professionals, like my GP who once looked up N24 on Wikipedia mid-appointment and I dread for their patients. 

Your self-stated goals are to "[improve] sleep health and safety through education, public awareness, and advocacy" and "[improve recognition of] the signs and symptoms of sleep disorders and seek effective treatment for them.".

You have beyond failed in these goals, and are actually working against them.

In my heart, I'm a researcher. My MSc was in-depth researcher training, making me an accredited ESRC researcher. I've collected data from a good few sighted N24s and I'll be sharing some of this here to illustrate my points.

Lets go through your website, page by page:

1: Facts and Prevalence

"CRD Free-running" is a subtype of N24? I'm not sure why you're getting that from. They're synonymous. The ICSD - I'm admittedly working from the first revised edition as that's the only one accessible to me online - does not mention "subtypes" of N24.

"Inappropriate exposure to light-dark cycles"

You don't clarify what this means, but we know. You're blaming sighted N24s. We "stay up late". We "sleep in". Our condition is self-inflicted. This is a recurring theme when people with CRDs seek medical treatment. This lead to a delay in me receiving treatment of 8 years. Your propogation of such damaging stereotypes - they're recurring on your page - is utterly unforgivable and does active harm.

"No longer a teenager, this became dismissed as ""typical lazy student"" and despite controlling my life, I didn't realise it was the problem. I felt constant guilt"

"Am I alone?"

Sighted N24 doesn't even get a mention. What can be more illustrative than that? N24 is inherently lonely but to be whitewashed out of existence? That makes it quite a bit lonelier.

"The loneliness of long nights gnaws at me. There are times when I don't see any daylight for days and I worry that I find it too easy not to go outside. I have missed out on important social occasions due to not being able to stay awake"

2: Symptoms & Diagnosis

"Even a total loss of vision does necessarily eliminate the eye's ability to send day-night signals to the SCN"

Wow, this is actually accurate. However, you are misleading, purporting this to be the only and known cause of N24. Cases of sighted N24 have occurred following trauma, and have been linked to genetic causes. The second paper itself says that the causes of CRDs are not yet known. Quod erat demonstrandum.

3: Treatment


You're right in suggesting that melatonin is a possible treatment for sighted N24, except that it barely works. The evidence base is a collection of case studies, just as often saying it is ineffective as it is effective. There is nothing else.

You mention tasimelteon multiple times throughout the entire page, and this is when I started to get suspicious. More on this later, though.

4: Living With & Managing

"N24 can be misinterpreted as a psychological disorder". This is, tragically, very true. This is a devastating case, with similarities to my own, but more alarming is the sheer number of sighted N24s currently experiencing this. However, you are actively contributing to this, with behaviour such as...

5: Associations with depression

This was your landing page to your website on my first visit. Forgive the profanity, but I wish to share my initial reaction, on Twitter:

"Holy fucking fuck this website. Fuck Vander"[sic].

"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."

Okay, firstly, this is inconsistent with your own page. On one page, you say there's no cure. On the next, you say it's "transient". One on page, you (correctly) say it's a neurological condition, and on the next, you say it's "behavioural".

Second, you are blaming us. You're the doctors saying "stop being such a student". You're the parents saying "If you weren't so lazy.". You're the friends we lose because we're "just after attention", we "aren't trying" and we "don't care".

This is unforgivable. It is offensive. It is damaging.

"N24HSWS can be considered intrinsic, physical, irreversible (but treatable) and not associated with any psychiatric condition in blind subjects"

And, by virtue of exclusion, it is temporary, mental/behavioural, reversible and linked to mental illness in sighted people. You couldn't be more wrong. Treatments barely workand often they don't work at all.. There's genetic links, and biological abnormalities even before the manifestation of symptoms. This is not consistent with an externally-caused behavioural reversible condition.

"One previous study reported that of patients who had no psychiatric problems before the development of N24HSWS symptoms, about a third developed major depression thereafter. "

The study you're referring to is available here. I hightly doubt your interpretation of this study. You are writing from the unfounded assumption that sighted N24s "just feel a little bit tired" when their circadian rhythm is out of sync with the day/night cycle. You could not be more wrong. I have included my actigraph  - for the unitiated, the flat lines are when I was asleep and the bumpy parts are when I was awake.

This is - quite literally - a textbook N24 actigraph. My case is literally being published in a textbook as an example of a case of N24. Sighted N24s, as a rule, cannot sleep in time with the 24-hour day/night cycle and "just feel a little bit tired".

This obvious - if you truly understand the condition, as the authors do - insight is essential to the interpration of the finding of increased depression. I'll quote them: 

"It is possible that these patients had tried to adapt themselves to their social life and failed, leading to psychological stresses that could have precipitated their depression."

Attempts to live a normal life with N24 cause significant suffering. The reasons for this should be obvious: the isolation and loneliness, the financial instability, poverty and unemployable. In my case, reasons include the acute understanding that I will never be able to accomplish the goals I worked so hard for throughout University, the relatives I didn't get to see before they died because I couldn't be woken, the weddings I can't say I'll be able to attend because I don't know what stage of my cycle I'll be in, the missed social events with friends, the inability to buy fresh food because everywhere's closed at night. There's little annoyances and major dramas; they all add up.

The slight decrease in depressive symptoms when sleeping at night is much more readily explained by the fact that, by virtue of being awake during the day, life is so much easier

Your inept attempt to causally link N24 with depression is perhaps one of the most damaging and unforgivable parts of your misinformation and I have literally no qualms in saying that you are now part of the problem in propagating the distress that N24s suffer and you should be ashamed.

Finally, however, we must address your - and I use the word advisedly - utter marginalisation of sighted N24s. I will add, for the record, that I am not the only one who noticed this. People without N24 noticed it too.

Vanda, who are denying any input in your page, other than a donation, have a vested interest in erasing sighted N24s from existence. Their Oprhan Designation for Tasimelteon in the EU states

"Non-24-hour sleep-wake disorder is a condition where blind patients have sleep patterns that are not 
adjusted to the standard 24-hour clock."

This is an official government document stating the medical falsehood that N24 can only occur in the blind. You mention tasimelteon numerous times on your page, yet it hasn't even completed Phase III trials, nor been compared to melatonin (the current standard treatment) in any way. I find it difficult to accept that you would essentially advertise a currently-unavailable drug without any prompting from the manufacturer. 

Blind N24 is so much easier to treat. It responds well to melatonin, while sighted N24 barely responds at all. Targeting a drug at the melatonin receptors, therefore, would be much more likely to show a beneficial effect in blind persons. Why bother testing the drug in difficult-to-treat sighted patients when you can test it in easier-to-treat blind patients and it'll be sold to sighted patients anyway? And what easier way to get away with it than by claiming sighted N24's don't exist, or that they're "just mentally ill" and thus your drug is irrelevant to them?

This may sound slightly conspiratorial, but I'm under no illusions that the pharmaceutical industry is willing to bend our definitions and medicalise the 'normal' in order to sell its latest product. After all, history is resplendent with stories of dogs suffering separation anxiety and needing to be treated with fluoxetine.. isn't it?

I think I'm almost done now, but I'm going to leave you with few quotes from people online who read your website. I'll take them down, or credit them, if they ask me to:

"It's like N24 for blind people is real and should never be claimed to be psychiatric, and vice-versa for sighted. It's wacky and entirely inconsistent with the international classification of sleep disorders"

"It strikes me there's a parallel with [people] like radfem marginalising transwomen. Jealously guarding their in-group"

"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."

"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."

I hope you appreciate the damage the misinformation you're spreading can cause and that you rectify this with haste. I would personally like your organisation to be on the side of all people with disordered sleep (pray, even those with 'psychiatric conditions') because together we're stronger and can accomplish much, but know this: sighted N24s do not need you and we will fight you if you spread such harmful, poisonous and factually, verifiably wrong,  bullshit again.