Review: How to Be Sick (Toni Bernhard)

Everything this book says is absolutely true.  Mindfullness is awesome.  Spending energy being angry at reality for not living up to your expectations is not useful.  A calm acceptance of where you are now without attachment to the future is useful in almost any situation.  But my primary feeling reading the book was “This is fine for you, but I’m going to get better, so I’m just going to go wait for that.”  I told that to someone in the waiting room at the IV place who was probably suffering from something pretty serious*, thinking I was making a funny joke about how I had failed at zen, and she said “good for you, keep fighting.”

This captures a lot of the tension around health problems that are prolonged or chronic or ambiguous as to where they fall between the two.  If you “accept your limitations” too hard you end up putting yourself in smaller and smaller boxes until there’s nothing left.  If you don’t accept your limitations enough you push too hard and make yourself worse.  How to Be Sick isn’t falling into those traps.  It’s describing a third way, of zen acceptance that doesn’t overly narrow or widen your vision for the future because it’s not about the future.  The problem is that this is hard to teach.  The author had been practicing Buddhism for 10+ years when she fell ill, and most of the book feels more like describing the benefits or appearance of a mindfulness practice rather than how to achieve it.   I did get one really useful technique out of the book, enough to justify all of the time I spent reading it, and I suspect that will be true for a lot of people so I do recommend it.  It’s just not magic.

Although maybe it kind of is.  I ordered the book from the library when my doctor looked at me and said “maybe being pain free isn’t a realistic goal for you and you need to redirect your energy to learning to cope with it.”  But then I saw a specialist who told me that the damage was healing, would probably be finished in about a year, and in the meantime enjoy this pain medication that leaves you almost pain free.  So I can’t rule out that this book actually is magic, and if you are at the point where you’re considering books with subtitles like “A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers”, you probably are going to try weirder things in your attempt to heal yourself.  So give it a shot and please report back.

*I’m there to mainline protein because my teeth and stomach aren’t up to the task of eating enough to heal me, but a lot of people are there for debilitating but poorly understood collections of symptoms like fibromyalgia, or better understood but more terminal diagnoses like cancer.  Nothing makes me you feel grateful for your health after having dead bone scraped out of your jaw like seeing an eight year old get cancer treatment.

Review: Immune Defense Video Game

Medical-inspired video games have a long history of disappointing me.  For example, real pathogens don’t ride rocket ships around your organs (Trauma Center)

nor does every single member of the species worldwide suddenly develop a new trait all at once (Plague, Inc)

And Surgeon Simulator does not follow Atul Gawande’s best practice surgical checklists at all

Plus Trauma Centers’s difficulty curve is insane, and they found a way to make repeating unskippable cutscenes worse. But one of the nice things about game development getting cheaper is they can make games for me and the four other people who will appreciate a cross between an immunology textbook and Majesty, which is the best way to describe Immune Defense.  In Immune Defense you play as the immune system, releasing various immune cells (each with different skills, and customized to different pathogens), which you do not directly control (it isn’t pac-man) but can lure over to the bacteria with antibodies if the %^&*ing macrophages will stop eating them.  In place of the usual Hit Points it has an inflammation count, which is actually pretty reasonable.  It has some biological inaccuracies (I’m reasonably certain real neutrophils don’t change receptor types instantaneously), but it’s still overall educational. Note the lack of rocket ships in this trailer.

That said, it’s obviously still in beta, and if the phrase “immunology x majesty” doesn’t grab you, you’re probably better off waiting.  The tutorial is really lacking and they need to smooth out some of the controls.  But I had a ton of fun until tendinitis forced me to stop playing, and if “immunology x majesty” does inspire joy in your heart you will probably enjoy it a lot, so check out the IndieGoGo and demo.

Review: Selling Sickness ( Ray Moynihan, Alan Cassels)

(Previously)

Selling Sickness‘s goal was to convince the reader that pharmaceutical companies manipulate perception to create an impression of disease where none exists.  I was going to say it failed, but no, it didn’t.  It actually has some pretty good examples of how pharma manipulates perceptions.  I just find it’s own view problematic as well.  E.g. Pharma is trying to make the diagnosis of Female Sexual Dysfunction equivalent to male impotence, when it clearly isn’t, and that’s bad.  But Selling Sickness’s  implication that the components of FSD (low libido, anorgasmia, pain during intercourse) should not be taken seriously by medics is ridiculous.  Sexual pleasure is important to many people in its own right, and any of those issues could be a symptom of a serious underlying problem.  Testosterone is a bad treatment for low libido because it’s a major hormone with far reaching effects, but it is an excellent treatment for low testosterone, a serious health problem for which low libido may be the most obvious symptom.

Selling Sickness talks about how pharma companies manipulate disease definitions (by sponsoring educational conferences and key decision makers), but it doesn’t explain anything else about how those decisions are made, or what would happen in the absence of pharma money.  Without that information it’s hard to draw conclusions.  Which I guess is how I feel about the book as a whole: its advocating a very specific point of view rather than informing you on the topic as a whole.  There’s nothing wrong with that, except that it (rightly) condemns pharmaceutical companies for doing the same thing.

*Obviously there’s a lot of variation and some doctors respond to those symptoms properly.  My sense from the literature and anecdata from my friends is that they’re going against the grain when they do so.

ETA: Slate Star Codex provides an example of pharma criticism done right, because he talks about the cracks in the system capitalism is filling.

Selling Sickness: Depression and Anxiety

Previous: Aceso Under Glass Valentine’s Day Special

Like many people, the authors of Selling Sickness believe that drugs for depression and anxiety are over-prescribed, that they are used to escape everyday emotions, and that this is terrible.  Again, I wish they’d defined their terms better.

For example, it sounds ridiculous to give someone Prozac because they’re sad their mom died.  That sadness is categorized as natural and healthy, in fact barring very unusual circumstances it would be viewed as sick not to feel sad at that point.  But you only get anti-depressants for “being sad” if it lasts more than two years.  Until then, anti-depressants are given only when negative emotions* start destroying a person’s ability to run their own life, and thus become self-reinforcing.  It’s completely natural and healthy to still be morning your mom’s death two months later, but if you’re unable to shower or eat for that length of time it doesn’t matter that the depression has an obvious external cause, it’s hurting you and there shouldn’t be any shame in accepting medical treatment for that.

A common fear I hear around anti-depressants is that they make people tolerate situations which should be depressing, and thus impede their exit.  That’s a real concern, and I think we should watch for it.  On the other hand, there are lots of people who want to leave but are unable to do so because they’re so depressed, and anti-depressants give them the activation energy and hope in the future that lets them leave.  And the same drug can have both effects in different people, or even the same drug at different times, because humans are weird and we don’t understand what we’re doing.

“We don’t understand what we’re doing” is not a great endorsement for something that’s screwing with the chemicals inside your brain.  I do think we need to use caution, that the risks are poorly understood, especially by GPs, and that nutrition and exercise are underutilized as treatments.  I also think that even when anti-depressants are the best individual decision, mass use of them can indicate a problem (I’ve heard 50% among PhD students, which cannot be okay).  And there will always be room for debate- should you be expected to work productively a month into grieving?  To work in a really difficult, dehumanizing office environment?  Would you need anti-depressants to take care of your kids if you had better community support?

But big pharma is not the one creating those societal conditions, and destigmatizing mental illness because it benefits them financially seems like a success story to me.  If we’re going to counter over prescribing let’s look closer to the problem (doctors) or further away (societal structure), not question the people receiving needed help.

*Not necessarily sadness.  In fact in men depression often manifests as anger, which leads to under-diagnosis.

Aceso Under Glass Valentine’s Day Special

My original plan was to finish Selling Sickness and write an overall book review, but I have reached that stage where I can’t continue reading it until I get some of my current thoughts out of my head, so we’ll be doing this in stages.

There exist many, many criticisms of the pharmacutical industry, all of which I dislike for framing it as the fault of the pharmaceutical companies and not the FDA.  If you want to learn more about this, Bad Pharma is a good source.  Selling Sickness‘s is more specifically about claim is that pharmaceutical companies deliberately manipulate both the public’s and the medical field’s view of illnesses, and “defines health people as sick” for their financial benefit.

I really, really wish Selling Sickness had defined its terms better.  Let’s use heart attacks as an example, because it is Valentine’s day.  No one questions that heart attacks are extremely bad, that they are associated with high blood pressure and high cholesterol, and that giving medications that lower blood and cholesterol to people who have already had a heart attack lowers the chance of a second one and increase life expectancy.  From this some people concluded that high blood pressure and cholesterol cause heart attacks, and we should lower them with drugs even in people who have never had a heart attack.  Selling Sickness describes that as turning healthy people into sick people.

Let me say out several different possibilities that would account for all available information:

  1. High blood pressure and/or high cholesterol damage your coronary system, causing heart attacks.
  2. Sufficiently high blood pressure and/or high cholesterol damage your coronary system, causing heart attacks, but we have drawn the cut off in the wrong place.
  3. High blood pressure and/or high cholesterol damage your coronary system, causing heart attacks, if and only if you have already had a heart attack.
  4. High blood pressure and/or high cholesterol and heart attacks share a root cause, the common treatments treat that cause, and the indicator numbers go down as a result.
  5. High blood pressure and/or high cholesterol and heart attacks share a root cause, the common treatments treat only the symptoms and leave the chance of a first heart attack unchanged, but coincidentally help after a heart attack.
  6. There are multiple causes of high blood pressure and high cholesterol have multiple causes, one of which also causes heart attacks.  Drugs happen to attack root cause if you have it, lower blood pressure and cholesterol to no effect if you do not.
  7. High blood pressure and/or high cholesterol damage your coronary system only in conjunction with an unidentified third factor, and so drugs reduce lifetime mortality if and only if you have that factor.  People who have a heart attack have that factor by definition and thus benefit from blood pressure/cholesterol medications.  They would benefit from them before their heart attack as well, but we have no way to identify them ahead of time.

Under which of these scenarios would you call someone with high blood pressure sick?  It’s a trick question because sick and healthy aren’t actually medical terms. The term for something given to an asymptomatic person that keeps them from developing symptoms in the future isn’t “making them sick”, it’s  “preventative medicine”, and it’s generally considered a good thing.

If high blood pressure and cholesterol don’t immediately cause symptoms but do damage your coronary system, taking drugs to combat them is a good call (dependent on side effects).   You could call them sick or not, it doesn’t matter.  If there was a pill that kept you at your physical and mental peak for 100 years you’d take it, even if your only health condition is being mortal.  Or maybe high blood pressure/cholesterol does indicate illness, but for one of the reasons outlined above, medication helps the numbers without improving symptoms or outcomes.  Then you’re sick but shouldn’t take medicine.  How useful medicine is has nothing to do with the English words “sick” and “healthy'”.

To be fair, researchers make the same mistake.  What we ultimately care about is if medication improves an individuals quality and quantity of life (with exact weightings dependent on the individual).  That takes a long time to do because people take forever to die.  You only get 20 years total from when you first register the molecule.  For a drug intended to prolong life given to people in their 50s, the drug could go off patent (destroying any ability to recoup the cost of the trials) before it got out of trials.   Even waiting for heart attacks takes a very long time and a very large sample size,because heart attacks aren’t actually that common.  So researchers use proxy measures like high blood pressure and cholesterol, on the assumption that anything that lowers those must prevent heart attacks.  Even researchers who aren’t trying to recoup financial costs do this, because they would like to produce results some time before they retire.  The problem is that even if high blood pressure and cholesterol are tightly coupled with heart attacks, this method will inevitably over-include things that somehow affect the proxy measures without affecting heart attacks, and miss things that decrease heart attacks or lifespan without affecting the proxy numbers.  And of course it’s entirely possible the FDA let pharma companies nudge the cut offs for treatment much lower than they should be, because that’s easy.

So yes, there are a lot or problems with aggressively treating proxy numbers, but “applying the sick label to healthy people” isn’t one of them.

Review: The Decision Tree (by Thomas Goetz)

My trail of discovery to The Decision Tree was as follows:

  • Discover Iodine’s in-browser medical translator, become fan for life.
  • Watch Iodine CEO’s (Thomas Goetz) TED talk on the problems with how medical information is currently presented, and his solution.  Become very impressed.
  • Discover Goetz has a whole book on this stuff.  Order from library.

This was maybe not have been the best order to do it in.  Decision Tree is really, really good, but it lacks the specificity of the TED talk or Iodine’s recent work.  If I’d read it first, the other work (which was produced later)  would have been fulfilling the promise of the book.  But reading it last, I kept waiting for the other shoe to drop.  It is an amazing launching pad, but I went in expecting to see what had landed.

That may not even be fair.  Goetz points to a lot of specific things, like the Quantified Self movement, PatientsLikeMe.com, and actual research on how Dr. Internet affects people.  It’s just that none of these so singularly improve the signal to noise ratio the way Goetz’s work on presentation of test metrics did.  I guess what I’m saying is you should watch that TED talk.

Now that I’m over the fact that Decision Tree is not a 250 page TED talk, I can appreciate it for what it is, which is a reasonable 101 text on the concept of individuals monitoring and improving their own health.  It doesn’t give many specifics for either of those because the answers are so specific and so personal, but it does leave the reader better prepared to evaluate possible solutions they find.   That’s actually pretty hard to do, and really useful.  I could also see it as useful for medical professionals who are on the fence about patient-driven care.*  It is extremely helpful in explaining why over-testing is so dangerous, while respecting individuals’ right to data.  And if you’re not reading it during or immediately after a painful, stressful medical procedure, it’s actually a pretty light read. So if this book looks interesting to you I’d recommend it.

*Goetz is unreservedly pro- patient led decision making and research.  I am too, until I remember a lot of the anti-vaxxers have put an enormous amount of research into their idiotic, dangerous, anti-social position.  I don’t know how to preserve the rights of me + my friends to know our own data and correct our doctors’ mistakes while preserving the rights of children to not die of entirely preventable diseases.

Review: Surprisingly Vegan Waffle Mix

Before I was tested for food sensitivity my diet was incredibly reliant on eggs, dairy, and wheat, so you can imagine my dismay when I tested sensitive to all three things and was told to give them up.*  When I did so, I decided to shift to eating foods that naturally didn’t contain any of those things, rather than search out substitutes for my old staples.  My theory was that vegetables can be really awesome at tasting like vegetables, and meat can be… well at the time eating any meat was a huge struggle, but it was one I eventually expected to pay commensurate dividends.  But the vegan milks just remind me of how much better actual milk is, and the thing that makes gluten-containing food delicious is gluten.  Plus the imitation food tends to be incredibly processed in order to more closely approximate their originals.  If I was going to put a ton of work into learning to cook and enjoy different foods, I might as well pick the healthier of the two.

But everyone needs easy carbs some times, and more than one thai restaurant in my neighborhood now recognizes me on sight, so I needed some new options.  John served this vegan, gluten free waffle mix (referral link: Charity Science) at an EA event and I have to say: it’s pretty good.  Not good enough you’d choose it over regular waffles for taste alone, but pretty good.  The ingredient list is short and full of actual foods.

I seriously doubt this will apply to anyone else, but it’s interesting in light of my recent deep dive into appetite hormones.  When I eat waffles + syrup and nothing else, there is an obvious disconnect between different parts of my brain as to how full I am.  Each bite of waffle is ridiculously rewarding (indicating high ghrelin?), and yet I never seem to feel satiated, even as my stomach reports it is uncomfortably full.  I solved this problem by putting chia seeds in my syrup and interspersing waffles with swigs of protein powder (also mixed with chia seeds).  This seemed to get me the good parts of waffles while ensuring I also eventually stopped eating them.

One warning: they are not kidding about the cooking time for this mix.  It takes much, much longer than you are used to.  It is theoretically possible to turn this into pancake mix by watering it down, but I could never manage to give them enough time to fully cook.  Putting them in the waffle iron and walking away was easier.  The good news is they’re not as temperamental as regular waffles either, a few extra minutes doesn’t ruin them.  But do give them that extra time, or you will be eating batter.

*Many professionals believe that the test is purely a measure of what you’ve eaten, and that the immune reaction does not present a problem.  My personal experience is that I do much better when I avoid these foods.