Brain Eating Zombie of the Decade

Doctors will have more lives to answer for in the next world than even we Generals.
-Napoleon

Emmanuel Mignot- Director of the Stanford Center for Sleep Sciences

You claim to be the premier narcolepsy researcher in the world.
So, what exactly have you done to help us?

• The orexin discovery was nice, but you aren’t the only one who found it.
• The dog experiments were great publicity for you, but the actual studies only proved that their inherited form of narcolepsy does not apply to humans.
• Your full-genome analysis was super cutting edge, but didn’t actually help anyone.

Now, I know it is in your career interest do all the high profile experiments you can. And obviously your ultimate goal is to find some miracle orexin replacement molecule you can sell us. But that just isn't good enough anymore. While you have been playing Sleepgenius you have turned your back on the most abundant evidence, the most plausible explanation and the most promising treatment possibility.
You are looking for things that don’t exist while ignoring things that do.

Narcolepsy is no ordinary illness. We won’t just get sleepier until you get around to finding and patenting a drug. We aren’t just tired- we are tormented. Our minds twist and turn against us. Narcolepsy causes major depression and suicidal tendencies. Some of us will die. We will remove ourselves from your patient pool. Permanently.

Despite that handicap, a number of us have managed to figure this out. We have crawled through the darkness, fought the confusion, seen through the lies, read all the research, tried every possibility, and somehow found relief.
And we go to our doctors, and they tell us we are imagining it. They have never heard of such a thing. And then we come to you because of your reputation- and you ignore us. More than that, you exclude us.

Nobody knows about this because you have defined us out of existence. You confidently tell us that anyone with a known trigger has “secondary” narcolepsy. But when asked, you admit the cause of “primary” narcolepsy isn’t known. I really shouldn’t have to explain the error in that logic to an educated man such as yourself. You cannot arbitrarily create categories without a distinction.
Furthermore, if we have determined that our narcolepsy is triggered by food, we are ineligible to participate in your research studies. That's the protocol- if you have a trigger, then it's not "real" narcolepsy.

Do you understand the implications of your methods?
First of all- they marginalize people who have actually gotten better. You disregard known remissions. YOU IGNORE YOUR BEST LEADS.
And secondly- they guarantee that if narcolepsy is caused by food- YOU WILL NEVER FIND THE ANSWER.

All the evidence points to diet as the most probable cause of narcolepsy.
• Orexin neurons innervate the entire gastrointestinal tract and regulate metabolism.
• Inflammatory diseases of the gastrointestinal tract have been shown to affect the function of orexin cells.
• Orexin cells are glucose sensitive. It has already been shown that a sugar-free diet ameliorates narcoleptic symptoms.
• Your own studies indicate that narcolepsy is an autoimmune disorder.
• Autoimmune antibodies have been shown to affect the function of orexin cells.
• DQB1-0602- the primary gene associated with narcolepsy- is a known gluten autoimmunity locus. Some of the secondary genes are too.
• People regularly report dramatic remission on a gluten-free diet. And they have reported this directly to you. For at least ten years. We know that you know this.

Your selection practices are highly suspect for this simple reason: You do not know if your “primary” narcoleptics are gluten intolerant or not. Despite the fact they ALL carry the gene, you have never bothered to do any tests and find out. Even after multiple requests to do so.
We suffered for that information. You ignore it. And those people are still suffering.

Due to your status as “premier self-promoter” and insidious relationship with Narcolepsy Network you have thousands of our blood samples at your disposal. Yet you still don’t investigate this. And you won’t share them with other researchers, either. As far as I can tell, the only one that helps is you.
It’s unfortunate that dietary therapy won’t make you a lot of money. And that if you actually test this you will probably lose a lot of patients. We don’t care. We have more important things to worry about. 35,000 people commit suicide in the U.S. each year. Chances are most of them are narcoleptic. You may not be motivated by that. But we are.

Luckily for us, it doesn’t really matter if you decide to study this or not. We don’t actually need you to prove this or a sleep lab to get better. Each one of us can do it in our own kitchen. And I am personally going to make sure everyone knows that.

Looking for a drug is a fine goal if that’s what you want to do. An orexin agonist will surely make someone obscenely rich someday.
But you probably shouldn’t pretend your motivations are magnanimous while you use your influence to exploit us and prolong our crippling misery. I’m guessing there’s a special place in Hell for that.


Dr. Mignot has consulted for Jazz, Actelion, and Cephalon; is on the advisory board of Eli Lilly and Actelion; has participated in speaking engagements for Roche; and owns stock in ResMed.
ResMed is a developer, manufacturer, and marketer of products for the diagnosis and treatment of sleep-disordered breathing.