Neurological disease: a complicated beast

Earlier today I was doing a little Googling looking for information that I plan to use for a thesis project when I came across a blog about the science of Parkinson’s Disease. At first I was really excited since I rarely see blogs about the science of specific diseases and I feel those are very much needed in today’s serious state of scientific misinformation. After the initial surprise of its existence, I actually made the mistake of reading the blog. I was not only disappointed, but saddened as well.

My disappointment was less about the apparent state of research and more about how research (and researchers) is presented to patients and their families. How and why biological research is conducted is largely a mystery to the vast majority of even the most educated people. What disappointed and distressed me most was how research was perceived by this patient. It was of the “why aren’t you doing this?” mentality that I find is quite pervasive in online patient communities of all diseases I’ve come across. This idea that we researchers are not really interested in certain questions about disease progression and pathology are partially correct but largely misguided, and often perpetuated by the perceived lack of progress in curing the disease in question.

It is true that scientists often halt seemingly promising lines of research much to the dismay of patients suffering from a debilitating disease, but it is not because we do not care. Instead, we do it because it makes sense scientifically and financially. If it doesn’t seem to be a fruitful endeavor then there is no point to keep wasting very valuable time and money pursuing it. There is also a simple reason we do not let patients dictate our research direction: they do not understand the science behind their disease. This is not an insult, but a simple fact. These are very complicated matters that take years of training in order to just begin to understand, and to expect a patient with little knowledge of biology to truly understand the research is unreasonable. That is why we don’t expect them to understand the underlying pathophysiology of their disease. However, patients oftentimes feel they understand more than they do (a little bit of knowledge…) due to their intimate knowledge of their disease. I cannot blame them, but I do wish they would have a little humility and acknowledge that there are plenty of professionals out there who have studied their disease for years in order to understand and, hopefully one day, conquer it.

Though most of us scientists got into research due to simple human curiosity it does not mean we don’t care about the real world implications of our work. We’re working hard not just for ourselves, but also because we know it makes a difference not only in the lives of patients, but also other scientists, and humanity at large.

Overall, I wish the author of the above blog the best in his/her treatment and that this post may help explain a bit of why we do what we do, but I also wish that some of the opinions of the author are changed for the better.

Funding science

As a scientist I have found that funding is everything.  To do good science you need  money and lots of it.  Everything is expensive.  People, equipment (dear lord…), consumables, time, everything is much more expensive than pretty much anyone outside of science would think.

So how should the government decide which scientist should be funded and which shouldn’t?  It’s not an easy issue and it’s one that has been debated for a long time, but it has recently ended up in the NYT and it really began to piss me off.  Essentially, I believe people don’t have a realistic view of what scientific progress is: slow and steady with the occasional breakthrough.  Those outside of science (and some idiots within our own ranks) seem to think that only breakthroughs are worth the money and that we should then fund all the people who think way out of the box and have radically new ideas.

However, there is a reason these people don’t get funded by governmental agencies very often.  While the work COULD POTENTIALLY be high payoff, such research is characterized to be very risky.  Why?  This could be for any number of reasons: little background data, implausible mechanism of action, little to no experience in the field, etc.  These are, in my opinion, very good reasons for not funding scientific research because the very nature of science is extremely CONSERVATIVE.

Now, I know what you’re thinking: “Conservative?  But I thought Conservatives hated science and did everything they could to undermine it.”  In that sense you’d pretty much be on point, but I’m not speaking of conservative in a political sense.  Science makes slow and steady progress because by it’s very nature a lot of data must be backing a certain idea in order for it to be accepted by the scientific community.  This makes it much more difficult (but not impossible) for incorrect ideas to take hold.

This is why I don’t feel bad for the researchers spotlighted in the article as being “ahead of their time” or “revolutionary” or whatever term you want to use.  Take Dr. Jaffe for example.  Here is a woman who has been dealing with the grant system for two and a half decades and she thinks it’s unfair that her grant was rejected out of hand because she had no preliminary data?  Pardon me, but she’s a fucking moron if she actually believes that.  “Of course I don’t.  I need the grant money to get them [the preliminary data].”  Fuck her, that’s not how funding agencies work and she knows it.  She’s just trying to be the victim here.

How it really works is that you use grant money that you already have to do quick, exploratory pilot studies to see if your ideas actually have any merit.  If they do then you write up a grant and include your pilot study as the preliminary data and submit it.  Funding agencies will then decide if your work looks promising or not and decide your grant’s fate.  But to submit a grant with insufficient (or nonexistent) preliminary data and then blame the funding agency for not giving you money is absolutely fucking ridiculous.  Sure, the funding situation is far from perfect, but you know the rules so you have to play by them.  If you don’t then you have no room to complain.

Natural substances/products and a common claim

Don’t fall for nonsense, just because a product is found in nature does not mean it is good for you or is any better than man-made substances.  When people mention that something is “natural” in order to make you more interested in it they conveniently want you to forget that there are a lot of natural substances that are potent enough to kill you hundreds of times over.

Also, remember that the danger is in the dose.  Normally toxic substances can be harmless in small amounts and typically safe substances can be very toxic in large doses.  We put toxic substances into our bodies every day and most people will never see the effects of them because they are in such small doses.  This whole concept is why the EPA and other agencies can post acceptably safe levels of things such as mercury, arsenic, dioxins, etc.  A “natural” product doesn’t necessarily have safe levels of ingredients

And while I’m on the subject, if you ever see a product that claims to “boost your immune system” run away from that product.  What the hell does that statement even mean?  First, the company that is promoting their product would have to show that it somehow modulates some part of the human immune system (increasing T-cells?).  They would then have to show that the modulation their product induces actually has the desired effect on whatever problem/disease it is trying to alleviate/cure (because you can’t just assume that an increase in something in the immune system is actually going to change the immune system – a bit counter-intuitive, but that’s how science works).

Personally, I stick to well-known, tried-and-true drugs, and I think you should too.

Cancer and the drug companies

Ever since I can remember there have been a small but vocal contingent of people who hold the belief that the big-time drug companies (Big Pharma as they’re commonly known) are willingly and purposefully withholding cures for various diseases, but most notably cancer. No, not any specific cancer, but “cancer” in general.

First off, cancer isn’t one thing. It’s an umbrella term for a very wide ranging number of diseases that happen to share a few defining characteristics. It may be theoretically possible to treat a very large number of them with a specific therapy (such as halting angiogenesis – blood vessel formation), but since not all cancers act the same way I think it’s impossible to have a “cure for cancer.” If there was one out there it would be decades beyond our current medical technology since we simply don’t have the basic science of cancer understood well enough to form a reliable “cure” for it.

Even more damaging to this idea is the amazing cooperative conspiracy Big Pharma would have to have to be undertaking to keep such an amazing scientific breakthrough under wraps.

But what puts this idea to rest is this: science is all about prestige.  Anyone who has spent any time in the academic sciences knows how absolutely ruthless (seriously) people can get about new scientific discoveries.  I know loads of people who would disown their families to be a first author on a ground-breaking paper because they know it opens up the scientific world to them. Prestige equals power, money, powerful positions, and authority in science, and everyone wants it.  A cure for cancer would be in a class of its own when it comes to scientific accomplishments; instant Nobel prize (along with many other prestigious prizes), any tenured university position you want, the ability to charge tens of thousands of dollars for speaking engagements, becoming top dog in biology, knowing that you’re going to be personally responsible for saving millions of lives, and the inevitable millions of dollars that will be generated by the cure (most will go to the university, but s/he’ll make money off it too).  This makes the notion that somehow a cure is out there that is being suppressed by the very scientists who created it is so absurd as to be unbelievable without some form of evidence.

It has been said many times, but extraordinary claims require extraordinary evidence.  If you believe junk such as this then pony over that evidence. Oh, that’s being suppressed too? How convenient…

On perspective

For at least the past six years I have always ended my self-pity with the line, “it could be worse, I could be on fire.” It’s kind of a joke, but it does really keep me grounded; no matter how bad my problems seem there are plenty of ways my life could be much worse. The vast reach of the internet has made that line even more applicable. Now, every chance I can I downplay the relative bad stuff that has happened in my life because, well, it is only RELATIVELY bad. No one died, no one was crippled, no one was permanently hurt.

It doesn’t make how I feel about a personal situation hurt any less, but it does put it into the larger world perspective which, in my mind, is a good and grounding feeling. For instance, I recently contacted a sweet girl I went to high school with about a fairly unimportant conversation I had and she mentioned that I was one of the few people to take the time to contact her about anything beyond the general “hey, how’s it goin???” bullshit since her father had died. Her father succumbed to cancer late in our senior year roughly seven years ago and she still feels it everyday. Even with everything that has happened to me in my life I have never felt anything like the hurt that she has felt. I know that feeling such sorrow is part of being human, but knowing how much it has hurt her I hope to never feel it and that is why I put all of my sad life happenings into perspective with, “it could be worse, I could be on fire.”

Her story also struck a chord due to my current situation. I am writing this post sitting in a house with my mother and father quietly sleeping in their second-floor bedroom knowing full well I will see them in the morning, and I take that for granted. I shouldn’t, but I do. Most of us don’t appreciate the little things that a surprising number of people lack: the ability to breath properly, walking, not having to worry about a family member, etc.

Yes, I’m getting divorced and I’m almost broke. However, my wife and I still have a great relationship, I have savings I can use to help the financial troubles, I and my family are still healthy and prosperous, and I’m beginning grad school this August. As bad as things may look from a single perspective, when you take a look from all perspectives many times your life looks much better than you could possibly imagine.

Just remember: it could be worse, you could be on fire.

Shit just got real

I just learned my mother-in-law has breast cancer.  Holy fuck.