For shame, Burzynski clinic

Why am I directing my ire at the Burzynski clinic? Any one of these reasons would be enough, but let’s go through the list, shall we?

1. Pseudoscience. The Burzynski clinic claims to be able to cure cancer with “antineoplaston therapy.” What’s that? Mainly a load of bunk (emphasis mine):

Some people promote antineoplaston therapy as a cancer treatment. But available scientific evidence does not support claims that antineoplaston therapy is effective in treating or preventing cancer. Antineoplaston therapy was developed by Dr. S. R. Burzynski in the 1970’s. He believes that antineoplastons are part of the body’s natural defence mechanisms against cancer and that people with cancer don’t have enough of them. At first, he took these compounds out of urine and blood. Now, it is possible to make them in the laboratory. There are several types of antineoplastons. They are known by the letter ‘A’ and a number such as A10, AS-25 and AS2-1.

Antineoplastons are taken either as a tablet or as an injection into the bloodstream.

There have been a number of phase 1 and 2 trials in different types of cancer. These early phase trials test what dose of treatment people should have, how safe the treatment is, and how well it works. Early trials only give the treatment to small numbers of people. Although Dr Burzynski’s own clinic have reported positive results for these trials, no other researchers have been able to show that this type of treatment helps to treat cancer. Other researchers have criticised the way the Burzynski Clinic trials have been carried out. Despite researching this type of treatment for over 35 years, no phase 3 trials have been carried out or reported.randomised clinical trial is the only way to properly test whether any new drug or therapy works.

Are we clear? There’s no evidence that “antineoplaston therapy” cures cancer, despite decades of research. Moving on.

2. Unethical behavior. Despite this lack of evidence, the Burzynski clinic will happily give you their “treatment.” The newest example of this despicable behavior is with four-year old Billie Bainbridge, who has an inoperable brain tumor.

The Burzynski clinic is happy to “treat” her – for $200,000. Which was donated by random people and even some celebrities (including the bands Gorillaz and Radiohead), who had no idea that there’s no evidence that this treatment works. Exploiting sick children for your own profit is the lowest of low.

Quackometer puts it best on why this false hope is so terrible:

False hope takes away opportunities for families to be together and to prepare for the future, no matter how desperately sad that is. It may make the lives of those treated more unpleasant and scary. (Antineoplaston therapy is not without dangerous side-effects). It exploits the goodwill of others and enriches those that are either deluded, misguided or fraudulent. It may leave a tragedy-struck family in financial ruin afterwards. Giving false hope may be more about appeasing the guilt and helplessness of ourselves rather than an act of kindness to the sick.

3. Bullying. If you can’t back up your claims with scientific evidence, it seems like the next step is propaganda and bullying. Burzynski claims he’s some of “brave maverick doctor” who’s being persecuted by the scientific community. There’s a whole propaganda documentary supporting his clinic.

But now the clinic has turned to bullying bloggers who dare question the efficacy of his treatment. Marc Stephens, who represents the Burzynski clinic, has been sending deranged pseudo-legal rants to these bloggers, threatening to sue for libel. Andy Lewis of Quackometer had his family threatened:

“Be smart and considerate for your family and new child, and shut the article down..Immediately.”

If that wasn’t enough, Marc has aggressively gone after 17-year-old blogger Rhys Morgan, including a screen capture of a Google Maps satellite view of Rhys’s house in order to intimidate him. 

If Burzynski really is a visionary, his research should speak for itself. Bullying and silencing is not how science is done, despite how highly you think of your ideas. The Texas State Medical Board is holding a hearing next April to revoke his medical license - not because he’s a rebel – but because he’s unethically exploiting sick people with his pseudoscience.

If you want to learn even more about “antineoplaston therapy” and Burzynski’s history, Dr. David Gorski has an excellent and lengthy summary over at Science Based Medicine. And if you want to show these bullies that silencing tactics do not work, spread the word far and wide. Let’s teach them about this little thing called the “Streisand Effect.” 

Picking on myself

I couple of weeks ago I mentioned that I was checking out UW’s mental health clinic, mainly because I wanted to facepalm at the Traditional Chinese Medicine/acupuncturist screener. I wanted to explain why I was going, for two main reasons:

  1. I don’t want people to worry about me, especially since it’s not that bad. I know I concerned a lot of people, including some who emailed me personally, so I wanted to let them know I was okay.
  2. Mental health has a lot of stigma attached to it because people are so embarrassed to admit anything is wrong. And frankly, it’s silly. We don’t tease or shame people for having bronchitis or cystic fibrosis or other physical ailments. And hell, mental health is still physical – the brain is an organ, not some disembodied spiritual puppet master. If we don’t mock people for being deficient in insulin, we shouldn’t mock them for being deficient in serotonin.

I was especially motivated by JT Eberhard’s bravery in so openly discussing his struggles with anorexia on his blog. So I want to do my part in breaking down that stigma, and talk about why I was going.

I don’t pick on myself. I pick at myself.

Dermatillomania, Compulsive Skin Picking, BFRB (Body-focused Repetitive Behavior). There are a lot of names for it, mainly because it’s only recently being recognized, and no one knows quite how to categorize it. It’s part of the Obsessive-Compulsive Disorder Spectrum along with classical OCD, anorexia, body dysmorphic disorder, hypochondria, and Tourette’s. It’s very closely related to the more well known trichotillomania, which is compulsive hair pulling. But instead of plucking hairs, I peel at the skin on my fingertips and lips.

It was weird when I finally realized there was a term for what I’ve been doing since I was a little kid. But it was even weirder when I read the description of the disorder. It was like a stranger has been secretly spying on me when I read this article:

What I am referring to is not the kind of little bits of rough nail or cuticle that everyone picks at or bites from time to time, nor is it the occasional blemish that people might squeeze or pick. These nail-biters continually bite their nails past the nail bed and their cuticles until they bleed and are constantly walking around with red, sore, and sometimes infected fingers. Those who pick their skin compulsively have their faces and bodies covered, at times, with red sores and scabs known as acne excoria, a self-inflicted skin disorder that resembles acne. The smallest pimple or blemish must be opened and picked at or squeezed, either with the fingers or another implement such as tweezers, needles, pins, toothpicks, etc. Numerous scars are often the result.

It’s funny. These particular examples sound gross and extreme to me because they’re not my particular tick. But what’s become normal for me is probably bizarre to all of you. I pick at the skin on the pads of my thumbs and fingers, and at my lips. It starts with a bit of dead skin that many people would pick off. But my problem is I can’t stop. You know how little kids like to put glue on their hands, let it dry, and then peel it all off? It’s the same fun – except I’m pulling off skin that’s not ready to come off.

Sometimes I go too deep, or go too far, and I’ll bleed. The result is bright red, scarred thumbs that look miserable and hurt to bend, or bruised and chapped lips that I perpetually blame on the weather. It’s clear that it’s a compulsion. You’d think the first time I made myself bleed I’d stop, right? But I’ve done it probably hundreds of times, and most of the time I can’t even stop while I’m bleeding – the job has to be “finished” until everything that can be removed is.

Why? The article gets it right again:

Another similarity between these problems and trichotillomania is that they seem to happen when people are in one of two modes. Some do it in an automatic way, as if they are in a trance and not really thinking about what they are doing. Usually, they are involved in some other activity at the same time such as reading, talking on the phone, working at the computer, watching TV, etc. For others, the deliberate picking or biting is their main activity at the time, and they will frequently interrupt other activities to engage in it.

There is also a strong commonality seen in the various purposes behind these three problems. At the most basic level, they satisfy an urge. Many report an almost uncontrollable feeling of needing to do them. Pulling, picking or biting also seem to deliver a pleasurable or relaxed sensation. When sufferers feel stressed, doing these things has a kind of soothing effect on their nervous systems, and reduces levels of stimulation. On the other hand, when they are bored or inactive, they seems to provide a needed level of stimulation to the nervous system. This probably accounts for why so many people who dislike doing them find it so hard to stop. It simply “feels good” at the time, no matter what the consequences.

If I’m stressed, I pick. If I’m bored, I pick. Sometimes I don’t even realize I was doing it until the damage is done. And worse, sometimes I realize I’m doing it, and my mind is screaming “Just stop!” and I can’t.

And as time goes by, it gets worse. Not in intensity, but in scope. The more I peel, the more the skin around the edge gets weak – so I then have more stuff to peel in the future. Which means what used to be a little pink spot near my thumbnail has crawled almost to the base of my thumb.

So that’s why I went to get help. I want to stop before my whole hand is a scarred mess, or before I take a chunk out of my lips that won’t grow back. I wanted to stop feeling ashamed when people asked what was wrong with my thumb (A paper cut? A blister? A skin disorder? Who was I kidding?). I wanted to stop freaking out about someone noticing it in a photo or when I shook their hand.

But I couldn’t do it with willpower alone. And I couldn’t do it with friends yelling at me to stop – that just made me feel even more terrible, which ironically would make me pick more. Though I did find a trick to stop picking at my nails – I cut them very short. Forgetting to bring nail clippers on a speaking trip is a tragedy for me.

But an unexpected upside to all of this? I get to geek out about the science behind it.

I know, always the nerd. But it’s intriguing. There’s a good sign this is genetic, which is also true in my family. And the hypotheses behind it are interesting:

Some have theorized that there may be that the same out-of-control grooming mechanism in the brain underlies them all. My own theory is that there may be some type of dysfunction of a brain mechanism that regulates levels of stimulation within the central nervous system, and that these behaviors represent an attempt to control these internal stimulation levels externally. People seem to pull, pick, or bite when they are either overstimulated (due to stress or excitement) or understimulated (due to boredom or inactivity). Many similar behaviors can be observed in animals who are kept in confined or unstimulating environments, or who live in stressful conditions.

The latter theory is supported by the fact that anti-depressants often successfully treat dermatillomania, though little research has been done on it yet. But if anyone ever wants a genetic sample, they know were to find me.

So, that’s that. I’ve always been wary of putting something out there that people can use as ammunition to show how crazy I am (or atheists are, or feminists are, or evolutionists are, or…). But it’s worth putting it out there to make all the other “crazy” people realize they’re not alone.

And come on. If someone wanted to call me crazy, they already have plenty of wacky things I’ve said or done.

Off my ASS for …myself – Week 15

Starting weight: 186.4 lbs
Two weeks ago weight: 171.8 lbs
Current weight: 169.8
Weight loss past two weeks: 2.0 lbs
Total weight loss: 16.6 lbs

Getting back on track. Don’t have much to add this week, except that I’ve gone from this:To this:Next goal*: Be able to take that last photo without sucking it in.

*Real next goal: Put on more muscle and keep up the healthy diet.

Off my ASS for …myself – Week 13

Starting weight: 186.4 lbs
Last week’s weight: 170.6 lbs
Current weight: 171.8
Weight loss this week: -1.2 lbs
Total weight loss: 14.6 lbs

Weight loss… Y U NO MAKE SENSE?!?!

I was so good this week! I worked out every day, I was at or under my calorie budget…but I gained weight. Blargh.

This is what we call a plateau, folks.

Oh well. I know if I keep it up, I’ll eventually break through it. Just annoying that this doesn’t follow some sort of rational pattern.

On an interesting side note, I’ve noticed I do much better if I set my calorie intake at the rate of 1.5 lbs lost per week rather than 2.0 lbs. 1300 cal is just too low, and so I’d fail almost every day – and when I was in the mindset of failing, I’d give up and overeat since I already went over my budget. But I can easily do 1600 and be full – and often times that positive attitude will make me go a little under. Woo psychology.

Off my ASS for …myself – Week 12

Starting weight: 186.4 lbs
Last week’s weight: 170.8 lbs
Current weight: 170.6
Weight loss this week: 0.2 lbs
Total weight loss: 15.8 lbs

How in the world did my weight basically stay the same while traveling? I eat horrible food when I’m on an adventure! Fast food in the airports, bar food after the talks, free meals, free alcohol… I think the only healthy choice I made all week was getting brown rice instead of white when PZ and I got Chinese food. I guess all the running around and stressing about my talk balanced it out.

The new quarter starts Monday, and oddly that will make me get back on track. Only being able to eat what you bring to work and eating it on a strict schedule is oddly helpful for weight loss.

Two weeks until AHA in Boston… and I will be in the 160s!

Off my ASS for …myself – Week 11

Aka, the week of Fail.

Starting weight: 186.4 lbs
Last week’s weight: 169.4 lbs
Current weight: 170.8
Weight loss this week: -1.4 lbs
Total weight loss: 15.6 lbs

Oops.

Yeah, it wasn’t a good week for weight loss. I ate out and drank way too much – and while I thought I was staying under my calorie restrictions, it’s very easy to underestimate restaurant foods. Not to mention I’ve been waking up at 11am every day – woo vacation. I’m sure if I was weighing myself at 8am like usual, I’d be a little bit lower.

Oh well.

The extra fail was that I told myself I’d try out the gym now that I’m on break…and I totally spent the whole time playing Pokemon instead. And next week I’ll be speaking in Minnesota, which means eating a lot of food while traveling.

Dooooooooomed!

And I so wanted to be in the mid 160s for the AHA conference… Well, I have 3 weeks. Maybe I can still do it!

Off my ASS for …myself – Week 10

Starting weight: 186.4 lbs
Last week’s weight: 171.6 lbs
Current weight: 169.4
Weight loss this week: 2.2 lbs
Total weight loss: 17.0 lbs

I finally got sick of putting up with my increasingly baggy size 12 pants, so I went shopping with a friend today. Size 10 was actually a little too big, and size 8 (which I haven’t worn since high school) was a *little* too tight…but I went with the 8 since I plan on losing more weight and pants always get loose once you wear them a bit. So fuck yeah, back to a size 8. Feeling pretty awesome about that.

The quarter is over, so after I do a bunch of housekeeping things (Yes, Dad, that includes taxes and getting new tires!), I’m going to check out UW’s gym. I hear it’s really nice, and I’m technically paying for it anyway, so might as well go. Someone told me some machines allow you to hook up your iPod to watch videos from a personal TV screen. Guess who’s going to burn calories while watching House and America’s Next Top Model!

Wait, screw that. I can totally manage to play Pokemon while on an elliptical machine.

Off my ASS for …myself – Week 9

So, I decided I’d still keep updating you guys about my weight loss journey. Why? Because it’s my blog and I can do whatever I want. And because publicly stating my progress helps keep me on track, and I’ve been getting messages from people saying I helped encourage them to eat better/exercise too. So yay!

Starting weight: 186.4 lbs
Two weeks ago’s weight: 173.8 lbs
Current weight: 171.6 lbs
Weight loss these past two weeks: 2.2 lbs
Total weight loss: 14.8 lbs

Not bad, considering two weekends ago I was stuffing my face at the SSA SoCal summit, and last weekend I was stuffing my face with free food for grad student recruitment. But I’ve been exercising and eating well on all the other days, so I’m still making progress! So close to the 15 pound mark!

After the end of the quarter craziness is over, I definitely have to go clothes shopping. My pants have become unacceptably baggy. I’m almost another belt loop smaller – to a loop I’ve never used since I bought the belt in college.

If I keep up this rate, I should be really close to my high school weight by the AHA conference in April. In which case I’m totally buying a cute outfit, which I can justify because Chris Stedman wants to find an awesome Boston gay bar for his birthday. If you don’t dress up for the gays, who do you dress up for?

Off my ASS for the SSA – FINAL RESULTS!

Starting weight: 186.4 lbs
Last week’s weight: 174.8 lbs
Current weight: 173.8 lbs
Weight loss this week: 1 lb

Total weight lost: 12.6 lbs!

Wooooo! I can’t believe what mild exercise, eating healthier, and eating less (no, you don’t need three pieces of cake, Jen) can do. I know BMI isn’t a perfect measurement, but as an estimate, today is the first day in years I’ve actually not been considered overweight for my height and age – just hit a BMI of 24.9! Most importantly, I feel better and I fit better in my clothes.

Though enough of all this subjective personal emotions crap – if you’re like me, you want DATA!
(click here for larger version)

As you can see, I’ve marked some interesting events that affected my weight. I also should have marked all the events that I thought would affect my weight, but didn’t – two other birthday parties, happy hour every Friday, the Superbowl, Indian food. I guess it just goes to show that an occasional beer or cheat meal won’t completely derail you from your goals.

I also added a trend line because I’m a nerd. For all the fluctuations weight loss entails, I was impressed by the relatively high R squared value. And the equation ends up working out to losing about 1.45 lbs per week. See, I was on a healthy pace!

As for the competition between me and JT… well, he’s actually been pretty sick for the last couple of weeks, so he’s pulled out of the official competition. Doesn’t want me to have to pay up because he’s losing weight from illness. So… I guess by my personal standards, I win for reaching my goal? I guess we’ll just have to buy each other drinks at this weekend’s conference.

And as for the competition between me and Phil…well, I defeated him by a good three pounds ;) Sorry Phil – I know your wife was on Team Jen and potentially sabotaging you with her cooking, but you still have to pay up!

To everyone who’s put up with reading these blog posts, or pledged to donate to the SSA for every pound I lost, thank you! I’m not done yet – I’d like to get close to my high school weight by the AHA conference in April – but I won’t bother you guys with weekly updates.

Thanks again! I’m going to celebrate by falling off the wagon at the SSA SoCal conference this weekend, haha.

Off my ASS for the SSA – Week 6

Starting weight: 186.4 lbs
Last week’s weight: 177.2 lbs
Current weight: 174.8 lbs
Weight loss this week: 2.4 lbs

I lost all 2.4 of those pounds in the two days following posting Sharon and Lyz’s guest post. Wooo stress! It’s amazing what it can do when decoupled with stress eating (more cake will make me feel better, I know!). But yeah, I’m not making that tactic a normal part of my weight loss routine.

But in positive news, I blew past the 10 pounds mark and went down one notch in my belt – back to the notch I used to use, but progress nonetheless! I really need to buy a new pair of pants, but the optimist in me is hesitant because hopefully even those will be too big in a couple more months.

The following week is the final week of my competition with JT. He’s slightly ahead of me, and this last week won’t be easy. My department is starting grad student recruitment, and I’m one of the hosts. That basically means I get to go to a lot of free dinners, lunches, breakfasts, and pub nights with the new recruits while talking about the department. I see extra exercising in my future.