Monday, October 31, 2011

Dia de los Muertos

I see dead people.

The child who had no limits.
The adolescent who never grew up.
The man who did not know right from wrong.
The tortured body that could not live in it's own skin.
The tormented skull that cut it's own face off.
The haunted soul who could not rest.
The prisoner of what he could not see.

The skeleton who could not stop dancing.

He would have paid any price, or literally moon-walked on a tightrope if it helped.
And a doctor actually killed him.

Really Scary Stuff

Firms to charge smokers, obese more for healthcare
So now more employers are trying a different strategy - they're replacing the carrot with a stick and raising costs for workers who can't seem to lower their cholesterol or tackle obesity.
Overall, the use of penalties is expected to climb in 2012 to almost 40 percent of large and mid-sized companies. The penalties include higher premiums and deductibles for individuals who failed to participate in health management activities as well as those who engaged in risky health behaviors such as smoking.
"Nothing else has worked to control health trends," says LuAnn Heinen, vice president of the National Business Group on Health, which represents large employers on health and benefits issues.

So they blame the patients...

Their attitude is presumptive.
  • They presume we don't care about our health. That we have to be “forced” to comply. That we want to be fat and miserable.
  • And they also presume to know what's best for us. That non-compliance actually is the problem. Frankly, their track record isn't that great. And they still totally ignore the possibility that they might be flat out wrong.

Let me tell you how this manifests in my life:
Every six months a young lady from our insurance company calls my husband and asks him questions. He's a diabetic so this is pretty standard. The past couple years they have had this “incentive program” to lower costs. If you participate in “Health Awareness” activities you save money.
EVERY SINGLE health awareness activity involves eating more fruits and vegetables. Even if you run marathons, there is no way to get the incentive if you don't eat more fruits and vegetables.
So every six months this young lady asks my husband if he is going to eat more fruits and vegetables. And he says:
“Do you have the study on which that advice is based?”
And the young lady says “Huh?”
“You are recommending a diet which has never been shown to benefit diabetics, so please cite your source.”
“But sir Fruits and Vegetables are part of a healthy diet.”
Do you have a long term study you can send me?
“Well No.”

My husband has the absolute best blood sugar numbers any of his doctors have EVER seen. They tell him to “keep doing what he's doing”.
If he eats more carbs- his blood sugar with go up. Period.
But this administrative aide who doesn't even know the basics of carbohydrate or insulin chemistry can call our house and demand he eats more fruits and vegetables or lose his “incentive” to be healthy.

He is extremely healthy. And there is no accounting for that in their plan. He gets no compensation for his self motivation.
It's insulting. And patently unhelpful.

The other way this strategy backfires-
I do not participate. I am pretty sick and I refuse to even sign up for the program. When I find an ACTUAL DOCTOR who understands my illesses- and helps me recover- I might think about sharing the details with some anonymous insurance company employee and her ridiculous checklist.
Yes, I pay more, but I'm not healthier. And that's what they say their goal is. Ha.


This is one of the most dangerous trends in health care.
  • It takes medicine out of the hands of professionals. Hell, they barely know what they're doing. Cholesterol screening has shown absolutely zero benefit, for example...
  • And puts it in the hands of insurance companies, employers, and the government.
  • And it creates rigid rules. Which are difficult to change.
  • Shifting the most drastic health and economic consequences directly to the most vulnerable.
The actual result of this process will be to entrench and accelerate the very health problems they claim are the cause of the cost increases.
And force those with chronic illness out of employment and insurance coverage.

Clever, that.
It's a little more subtle than just raising our rates and refusing cover to sick people, but accomplishes the same thing.

I really hope it backfires on them. Motivates some class action malpractice suits.

Sunday, October 30, 2011

Nightmares and Flashbacks

Sleep disorders plague vets with head trauma or PTSD
Sleep testing performed on most of the patients found obstructive sleep apnea in 56 percent of them and insomnia in 49 percent.
More than two-thirds (71 percent) of the soldiers had restless nights of fragmented sleep. Nearly nine in ten (87 percent) were "hypersomniacs," sleepy during waking hours, Collen said.

Very interesting details in the results. Clearly shows differences in pathology.
Several different things going on.

Saturday, October 29, 2011

How to find things that don't exist

Sports Medicine Said to Overuse M.R.I.’s
“An M.R.I. is unlike any other imaging tool we use,” Dr. Sangeorzan said. “It is a very sensitive tool, but it is not very specific. That’s the problem.” And scans almost always find something abnormal, although most abnormalities are of no consequence.

“It is very rare for an M.R.I. to come back with the words ‘normal study,’ “ said Dr. Christopher DiGiovanni, a professor of orthopedics and a sports medicine specialist at Brown University. “I can’t tell you the last time I’ve seen it.”

Friday, October 28, 2011

Bwa Ha Ha Ha Ha

Halloween Decorations from Evil Mad Scientist Laboratories.

Who says they're just for Halloween?!?

Upon further reflection

If you wanted to convince a bunch of narcoleptics that they needed your drugs...
You might take their hypersensitive nervous systems to a cacophonous place and feed them lots of sugar and gluten. Trigger their symptoms at every turn. Make them even sicker.
And then give “scholarships' to a lot of cute young ladies who are addicted to your drugs to show up there and talk about how great they feel and how much they love your product.

But I have a vivid imagination...

Thursday, October 27, 2011

Liars and Criminals

I'm not real good at financial stuff. Don't really understand economics. But I do know the poorer you are, the harder it is to keep your money. I like the way Matt Taibbi explains it.

Wall Street Isn't Winning – It's Cheating

It's the same with medicine. It's not the arrogance and greed that's so infuriating... it's the fact it's based on lies and guarantees bad outcomes.

Tuesday, October 25, 2011

Rotten Teeth= Rotten Brains

Teen violence linked to heavy soda diet: study
Researchers in the United States said on Tuesday they had found a "shocking" association -- if only a statistical one -- between violence by teenagers and the amount of soda they drank.
High-school students in inner-city Boston who consumed more than five cans of non-diet, fizzy soft drinks every week were between nine and 15-percent likelier to engage in an aggressive act compared with counterparts who drank less.
"What we found was that there was a strong relationship between how many soft drinks that these inner-city kids consumed and how violent they were, not only in violence against peers but also violence in dating relationships, against siblings," said David Hemenway, a professor at the Harvard School of Public Health.
"It was shocking to us when we saw how clear the relationship was," he told AFP in an interview.

Monday, October 24, 2011

The History Channel!

I am amused.

Zombies: A Living History
Premieres: October 25, 8pm ET
Network: History

What’s It All About? Although it seems like zombies are a recent phenomenon that has grown out of comic books, movies and TV, there actually is a long history of zombie legends from the dawn of civilization to today, and this two-hour documentary explores that history.
The special details how Europe’s Black Plague became one of the most prolific periods for myths and legends about zombies, explores why Viking legends believed zombies were nearly indestructible except by decapitation or immolation; examines other zombie legends from around the world, including secret stories of China’s Terra Cotta Warriors and the voodoo rituals of Haiti; and shows how modern science added a whole new twist on zombies beginning with Mary Shelley’s Frankenstein.
Set your Tivos. Happy haunting.

Looking for things that don't exist

The limits of Breast Cancer Screening

Translated into real numbers, that means screening mammography helps 4,000 to 18,000 women each year. Although those numbers are not inconsequential, they represent just a small portion of the 230,000 women given a breast cancer diagnosis each year, and a fraction of the 39 million women who undergo mammograms each year in the United States.
Dr. Welch says it’s important to remember that of the 138,000 women found to have breast cancer each year as a result of mammography screening, 120,000 to 134,000 are not helped by the test.
“The presumption often is that anyone who has had cancer detected has survived because of the test, but that’s not true,” Dr. Welch said. “In fact, and I hate to have to say this, in screen-detected breast and prostate cancer, survivors are more likely to have been overdiagnosed than actually helped by the test.”

But helping people is not really the point of modern medicine is it?
The point is to give you tests. Tests, tests, and more tests. Because tests make money whether you're sick or not.

(Now, I'm not real good at math, but at $100 apiece, I think that's about 4 billion dollars that could be spent on dental care and actually prevent some breast cancer. Sigh.)

Sunday, October 23, 2011

No sleep for the wicked

The next Sleep conference is in June in Boston.
I think we should submit a paper. Or a poster. Or something.

The deadline is December 15th.

Here's the call for papers.
Here's their website.

I have a thread over on the forum if you want to discuss...

Saturday, October 22, 2011

Zombie Liberation Front

Last Saturday night, on the bus going to Fremont street.

At the conference

The very first person I talked to asked me if I had Narcolepsy.
I said No, I don't have narcolepsy anymore. Would you like to not have narcolepsy?"
She said “No, I've gotten used to it.”

We are sick puppies.
On powerful mind-altering drugs.

Friday, October 21, 2011


Isn't the apocalypse supposed to start today?

ZomBcon 2011

Seattle has zombie events pretty often. The only people who compare in overall devotion to brain damage are in London. Go figure.

I can never go to them though. I see zombies all the time anyway...

On the record

Donations to Narcolepsy Network Conference

Cephalon (Provigil,Nuvigil) $30,000
Jazz Pharma (Xyrem) $20,000

Thursday, October 20, 2011

Well how about that

Study Implicates Hyperinsulinemia in Increased Incidence of Autism
It appears that both Type 2 diabetes and autism have a common underlying mechanism -- impaired glucose tolerance and hyperinsulinemia," said Rice University biochemist Michael Stern.

Fruit loops and French toast and Cupcakes, oh my...

Low Birthweight Infants Five Times More Likely to Have Autism, Study Finds
Gluten intolerance is also associated with smaller babies.

Dancing in my Kitchen

When it is good it is very, very good:

Antiviral Drugs May Slow Alzheimer's Progression
Researchers found that treatment of HSV1-infected cells with acyclovir, the most commonly used antiviral agent, and also with two other antivirals, did indeed decrease the accumulation of β-amyloid and P-tau, as well as decreasing HSV1 replication as we would expect.

Wednesday, October 19, 2011

Las Vegas Debrief

Well, I did it. I left the house. And went directly into the vortex.

Christina and I met up in Vegas and hung out with the narcoleptics.
It went really well, we got a good reception and found a few people who were real interested in the diet.

First though, I would like to say that Vegas is the absolute worst venue they could have chosen.
It is carefully designed to overwhelm neurosensitive people, and not at all interested in facilitating the requirements of conducting business. It was impossible just to use the internet or even make some copies. It was extra distracting for me, because I haven't been there in 20 years and it's a completely different place. I was totally disoriented everywhere I went. I guess it was nice we could smoke inside, but I went outside anyway just to get away from all the noise.

Although it was kind of comforting being around so many folks like me, I'm sorry I couldn't attend any of the sessions and meet more people. The last time I went to a conference I ended up running to my truck and crying for half an hour. To hear the things they tell you and the things you tell about yourselves and to watch you eat cookies and fall asleep in your chairs just kills me. I would have screamed involuntarily. Pretty sure.

Christina did attend though, and seems to have made friends and influenced people. She really is an exceptional woman. Beautiful, outrageously smart, brave- and friendly too. I'm so glad we have her to help us. And that I had her to moderate my stress.
I worked the lobby and handed out literature and toys. My theory is- if you can't say anything nice- give out gifts instead. Donuts are the usual bribery tool, but that wasn't really appropriate in this situation. I chose Emergency Inflatable Brains. One of my favorite things.

It was an insane weekend, 36 hours fueled by insomnia and starvation and squealing alarms, but all in all we were even more successful than we had hoped. Both of us are just now recovering.

For those of you who are checking in after getting our brochures: Yes I really am as weird as I seem... I hope you find something helpful here anyway.

(pic coming soon)

Tuesday, October 18, 2011

Correlation Games

Teens who work nights have 'double risk of MS'
The team compared the occurrence of MS among study subjects exposed to shift work -- defined as working any time between the hours of 9:00 pm and 7:00 am -- at various ages against those who had never worked night shifts.
The result was astounding: in both groups the researchers found that those who had worked night shifts for longer periods of time before they turned 20 had twice the risk of developing MS compared to those who never worked shifts.
The researchers suggest that disrupting a person's circadian rhythm, or daily rhythmic activity cycle, along with sleep loss could play a role in the development of MS.
"With shift work, your biological clock gets out of whack and you have poorer sleep quality (and) both these things have been shown to impact the immune system," Hedstroem told AFP.

My turn: They get it backwards again: Subclinical autoimmune activity causes nerve damage resulting in anxiety and insomnia, which predisposes these people to choose night shift work.

When I was in college, I thought after-hours retail inventory was the Perfect Job.

Gluten in the News

Jeff told me NPR had a piece on gluten today:

Look Who's Going Gluten-Free

Saturday, October 15, 2011

Brain Eating Zombie of the Decade

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

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.

Thursday, October 13, 2011

Tuesday, October 11, 2011

Let's talk about alpha-Synuclein

I literally try not to look for research anymore. Either it's really good and I have to follow up on it for days, or it's stupid and I get annoyed. Anyhow, sometime last year I did a Pubmed search on Narcolepsy just to see what was new. This article came up.

Absence of ubiquitinated inclusions in hypocretin neurons of patients with narcolepsy

That statement is a basic refutation of my hypothesis.
I terrified me so much I couldn't even click on it. I was pretty sick at the time and it totally panicked me. I let it ruminate in the back of my head for a while before I actually read the article.
I wondered a lot why none of you sent it to me. It took me about 9 months to see it. Still to this day nobody has. I wonder if the people who read it just dismiss me and move on... but then again most of you are probably too cognitively impaired to even look it up.
Anyhow while I got used to the idea I realized we could both be right.
If you read the article you will see the narcoleptic brains had very few orexin cells to begin with. 96 total in all patients. Most narcoleptics' orexin cells are gone long before they die. Nonetheless, those that were left did not show alpha-Synuclein aggregation.
However, my suspicion about the experiment turned out to be warranted. If you read it closely, you will notice that the counts were taken from cell bodies in the hypothalamus. The real problem with the experiment is that alpha-Synuclein and Lewy Bodies accumulate in the axon terminals and kill the cell from there. The axon terminals of orexin cells are in the digestive tract, not the hypothalamus.

I may be wrong about the alpha-synuclein hypothesis. But this experiment doesn't prove it.
A further experiment is warranted to conclusively determine if alpha-Synuclein aggregation is a factor in narcolepsy.

Saturday, October 8, 2011

On a lighter note

Theodoric of York, Medieval Barber - Saturday Night Live sketch

"A little pain never hurt anyone!"

This is Why

Mental illness 'rampant' in Somalia
Somalia has one of the world’s highest rates of mental-health disorders. An estimated one-third of its eight million people are affected by some kind of mental illness, yet there are only three trained psychiatrists in the entire country to care for them, according to the World Health Organization.
“Degrading and dangerous cultural practices such as being restrained with chains are not only widespread but also socially and medically accepted,” the WHO said in a recent study of Somalia’s mental health care.
I am guessing dental care is 'non-existent' in Somalia.

Friday, October 7, 2011

Making Some Progress

Why Narcoleptics Get Fat
People with narcolepsy are not only excessively sleepy, but they are also prone to gaining weight. In fact, narcoleptic patients will often pack on pounds even as they eat considerably less than your average person. Now researchers appear to have an answer as to why. It seems a deficiency of the neuropeptide hormone orexin, an ingredient that encourages hunger and wakefulness, may leave them with a lack of energy-burning brown fat.

I do not know why it is so hard for writers to refrain from assigning causality to these studies. The fact there there is less brown fat is not a cause of obesity. It's a side effect.
The reason we make more white fat is because we make too much insulin.
Lowered levels of orexin cause hyperinsulinemia.

Wednesday, October 5, 2011

Look at your kids

My sister has a horse farm. She also substitute teaches special ed classes sometimes. Today she left this message on my phone-
"I just wanted to tell you that I subbed with the autistic kids today and for breakfast they ate fruit loops and for lunch they ate french toast and for afternoon snack they got cupcakes."

Not just for sluts anymore

Cervical cancer virus fuels oral cancer
A prolonged sore throat once was considered a cancer worry mainly for smokers and drinkers. Today there's another risk: A sexually transmitted virus is fueling a rise in oral cancer.
The HPV virus is best known for causing cervical cancer. But it can cause cancer in the upper throat, too, and a new study says HPV-positive tumors now account for a majority of these cases of what is called oropharyngeal cancer.

So far I don't see any evidence that smoking and drinking actually cause cancer.
They might accelerate it, but the data points to microbes as the source, not toxins.

Saturday, October 1, 2011

The world we live in

Denmark introduces world's first food fat tax
Denmark has introduced what is believed to be the world's first fat tax - a surcharge on foods that are high in saturated fat.
Butter, milk, cheese, pizza, meat, oil and processed food are now subject to the tax if they contain more than 2.3% saturated fat. Danish officials say they hope the new tax will help limit the population's intake of fatty foods.

However, some scientists think saturated fat may be the wrong target. They say salt, sugar and refined carbohydrates are more detrimental to health and should be tackled instead.