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Friday night was the Cake Reception. I missed most of it. There was a few carbalicious crumbs left by
the time I got there. I went around the room looking for familiar
faces but only found a couple.
The Saturday sessions started with a
breakfast and presentation by Dr. Mignot.
I wish I could have taken pictures of
the things people were eating. It was both spectacular and
heartbreaking, watching the vast amounts of sugar coated gluten being
devoured. (I also wish I could have captured the sneers at my plate
of bacon.)
The Very First Announcement:
"The
first order of business is to thank Jazz Pharmaceuticals for their
generous financial support. They make this conference possible."
The Introduction:
"Here is the
guy we are counting on to help us.“
Hoots and hollers from the audience.
New Developments in Narcolepsy Research Genetics and Autoimmunity- Dr. Mignot
This was basically the same information
he gave when I saw him four years ago. He skipped a couple slides
and added on a few new things, but it wasn't strictly about new
developments. He went over the history of finding orexin and showed
the video of the dogs and how they now know that narcolepsy is not a
specific orexin or orexin receptor mutation in humans. That it is instead correlated with DQB1-0602 in the HLA portion of the genome which codes for immune proteins.
About this time the audience started
falling asleep on the great man. They clearly dropped off in direct
proportion to the amount of pastry on their plates.
The new information he offered fell
into two categories.
First that maybe narcolepsy is a
progressive disease. Not a specific one time cell loss.
- He noted there are about 10
different HLA genes associated with narcolepsy, not just DQB1-0602.- Some people have partial orexin cell loss.
- Some people really do have narcolepsy without cataplexy.
- And of orexin deficient patients w/o C: 50% will develop cataplexy within 30 years.
He actually even suggested that
Narcolepsy may be similar to Celiac Disease. Progressive cell damage
with varying amounts of pathology and symptomology in each
individual. My left eye started twitching and I thought my head was going to explode...
The new data on the Flu vaccine and
Narcolepsy.
- He went over the increased incidence
of narcolepsy after receiving the H1N1 vaccine. How is it
associated with a specific co-factor used to increase the immune
response. And that somehow this overactive immune response seems to
have triggered the onset of cataplexy in children.
- He also gave the results of his own
department's study that the same thing happened in China from H1N1
infection rather than the vaccine.
- He now believes that the flu virus
is possibly the trigger for Narcolepsy. He is wrong, but I'll
discuss that in another post. (here)
He then went on to the topic of Orexin
related drugs. That there are two types- things that mimic orexin
in the body (agonists) and things which block orexin receptors
(antagonists).
- Drug companies have rushed to make an
antagonist because insomnia is much bigger market than narcolepsy.
- His interest is in creating an
orexin agonist. A drug to replace our missing orexin.
“I will make it happen."
Big applause and hoots. That woke
people up.
I won't even get into the selective
science right now, I just want to say that after all these years one
would think he would put more effort into his slides. Copying
technical diagrams straight from journal articles for cognitively
impaired people is lazy and anti-informative.
Follow up QnA session. A
separate meeting in another room.
This is where he tried very hard not to
say the orexin drug is the ONLY thing he's interested in.
- "There may be there is dysregulation of blood sugar control but we haven’t looked into it.
- We haven’t done any systemic studies”
- "Transplanting living orexin cells into the body might be like giving you cancer."
- “There is only a remote possibility (5%) of inactivity vs. orexin cell loss."
- "Nobody knows what to do with NwoC narcoleptics, including myself."
He got a standing ovation for this.
Dietary and Environmental Strategies
for Managing Narcolepsy Symptoms Dr. Iris Bell
This was my favorite lecture. Dr.
Bell is an expert on chemical sensitivities and had a lot to say
about food intolerance.
She noted the many metabolic symptoms
of narcolepsy, and compared them to her patients with food allergies.
One of the most fascinating and important things she had to say was
that animals tend to crave the foods they are sensitive to. So if
you are sensitive to nuts, the reaction causes a deficiency which
makes you want more nuts. Sugar is especially effective in this
regard. And she elaborated quite a bit on how sugar promotes
addiction to amphetamines.
Minus points for being a video
conference and my disappointment at not being able to speak
personally with this brilliant woman. I may go to Arizona just to
do so.
Intro to Integrative Medicine
Rubin Naiman Phd
This guy put up an "Anti-inflammatory" food pyramid and I had to leave the room. Glad I did. Don't know whether I
would have screamed or cried. Apparently the rest of the lecture was
about yoga and chakras and inner healing or something. Something that makes
a lot of sense to cognitively impaired people on powerful drugs.
Body Weight regulation in
Narcolepsy, Clinical implications Dr.
Devandjan Sikder
This was a great lecture. Dr. Dev has
shown that orexin deficient mice produce abberrent brown fat.
Brown fat is sort of the opposite of
white fat, the stuff we hate. Brown fat actually burns energy and
increases an animal's basal metabolism. A lot. He has shown that
orexin deficient mice produce brown fat in which the mitochondria do
not mature, so it atrophies and dies. This is correlated with a
disproportionate weight gain when they are put on a high calorie diet.
He had several permutations of the experiment also showing that when
given Orexin, the animals gained brown fat and lost weight.
Although I disagree with him regarding
the underlying mechanism of this pathology, I especially appreciate
that he explained to the audience that their metabolism really is
messed up and that there is a reason they seem to gain weight
uncontrollably and can't lose it. He showed clear evidence that
orexin deficient animals actually eat less and weigh more.
He did a good job navigating the fine
line between technical information and a cognitively diverse
audience.
Special bonus points for good graphics and a sense of humor.
Special bonus points for good graphics and a sense of humor.
Generation of Hypocretin Neurons
from Human Skin Cells - Dr.
Florian Merkle
This was another great presentation.
Dr. Merkle is figuring out how to make orexin cells from human skin
tissue. This is important because it's been hard to study them.
As he said- live narcoleptics either don't have any or won't donate
them for some reason.... Ha. Anyhow, he showed us his evidence
that he has produced functional orexin neurons in a petri dish, and it looks good.
The obvious implications of this
ability are huge. Creation of both normal and narcoleptic orexin neurons to test and compare. Possible orexin
production and harvesting. Possibly orexin tissue transplantation
(He clearly countered Dr. Mignot's assertion that live cells would
grow and create cancer. Neurons don't divide.) And of course the
audience picked all that up right away. Unfortunately this was a
preliminary presentation and it will all have to be validated and
perfected and he cautioned everyone that it will probably be a decade
before that stuff becomes possible.
Nonetheless, pretty effin cool, dude.
Thanks.
Bonus points for clarity and infectious
optimism.
You totally deserve the Researcher of
the Year award. Congratulations.
Narcolepsy and Depression
Dr. Douglas Moul
I kind of feel bad for this presenter. Although a "Sleep Psychiatrist"- he's a specialist in insomnia, and seemed rather out of his comfort zone in a room full of narcoleptics after lunch. He basically recited the known data, and told
us a couple anecdotes about a few patients. He then gave us his
opinion that yes, depression in narcolepsy really is more than just
feeling bad about the disability.
His audience already knew that.
______________________
As you can see- I only attended
scientific sessions. There were a lot of other meetings I didn't go
to. Mostly because they were advice for actively sick people.
Presentations on the drugs and symptoms and "living well with
narcolepsy"- everything they wouldn't need to know if they had
the right information. There was a lot of spiritual stuff too-
dreams and art and poetry and yoga. 'Coping strategies' that make me want to
scream. But I must say, the science was better this year.
One of the last sessions was about how
to talk to your doctor.
Someday I'd like to see the
presentation about how not to need a doctor...
_____________________
All in all, I am more convinced than
ever that Dr. Mignot was right about one thing-
“We
are at a moment when things are going to change.”
Damn straight we are.
