science – Page 2 – Renaissance Guy

Eclipse Reactions

People have been asking since I announced that I would be chasing the eclipse for he to try and summarize my experience here. So, without further delay, here are my thoughts on the subject, muddled and disjointed though they may be.

It’s difficult to describe what seeing an eclipse feels like. A total eclipse, that is. A partial eclipse actually isn’t that noticeable until you get up to about 80% totality. You might feel slightly cooler than you’d otherwise expect for the middle of the day, and the shade of blue might look just slightly off for mid day sky, but unless you knew to get a pair of viewing glasses and look at the sun, it’d be entirely possible to miss it entirely.

A total eclipse is something else entirely. The thing that struck me the most was how sudden it all was. Basically, try to imagine six hours of sunset and twilight crammed into two minutes. Except, there isn’t a horizon that the sun is disappearing behind. The sun is still in the sky. It’s still daytime, and the sun is still there. It’s just not shining. This isn’t hard conceptually, but seeing it in person still rattles something very primal.

The regular cycle of day and night is more or less hardwired into human brains. It isn’t perfect, not by a long shot, but it is a part of normal healthy human function. We’re used to having long days and nights, with a slow transition. Seeing it happen all at once is disturbing in a primeval way. You wouldn’t even have to be looking at the sun to know that something is wrong. It just is.

For reference: this was the beginning of totality.

I know this wasn’t just me. The rest of the crowd felt it as well. The energy of the crowd in the immediate buildup to totality was like an electric current. It was an energy which could have either came out celebratory and joyous, or descended into riotous pandemonium. It was the kind of energy that one expects from an event of astronomical proportions. Nor was this reaction confined to human beings; the crickets began a frenzied cacophony chirping more intense than I have yet otherwise heard, and the flying insects began to confusedly swarm, unsure of what to make of the sudden and unplanned change of schedule.

It took me a while to put my finger on why this particular demonstration was so touching in a way that garden variety meteor showers, or even manmade light shows just aren’t. After all, it’s not like we don’t have the technology to create similarly dazzling displays. I still don’t think I’ve fully nailed it, but here’s my best shot.

All humans to some degree are aware of how precarious our situation is. We know that life, both in general, but also for each of us in particular, is quite fragile. We know that we rely on others and on nature to supplement our individual shortcomings, and to overcome the challenges of physical reality. An eclipse showcases this vulnerability. We all know that if the sun ever failed to come back out of an eclipse, that we would be very doomed.

Moreover, there’s not a whole lot we could do to fix the sun suddenly not working. A handful of humans might be able to survive for a while underground using nuclear reactors to mimic the sun’s many functions for a while, but that would really just be delaying the inevitable.

With the possible exception of global thermonuclear war, there’s nothing humans could do to each other or to this planet that would be more destructive than an astronomical event like an eclipse (honorable mention to climate change, which is already on track to destroy wide swaths of civilization, but ultimately falls short because it does so slowly enough that humans can theoretically adapt, if we get our act together fast). Yet, this is a completely natural, even regular occurrence. Pulling the rug from out under humanity’s feet is just something that the universe does from time to time.

An eclipse reminds us that our entire world, both literally and figuratively, is contained on a single planet; a single pale blue dot, and that our fate is inextricably linked to the fate of our planet. For as much as we boast about being masters of nature, and eclipse reminds us that there is still a great deal over which we have no control. It reminds us of this in a way that is subtle enough to be lost in translation if one does not experience it firsthand, but one which is nevertheless intuitable even if one is not consciously aware of the reasons.

None of this negates the visual spectacle; and indeed, it is quite a spectacle. Yet while it is a spectacle, it is not a show, and this is an important distinction. It is not a self-contained item of amusement, but rather a sudden, massive, and all enclumpassing change in the very environment. It’s not just that something appears in the sky, but that interferes with the sun, and by extension, the sky itself. It isn’t just that something new has appeared, but that all of the normal rules seem to be being rewritten. It is mind boggling.

As footage and images have emerged, particularly as video featuring the reactions of crowds of observers have begun to circulate, there have been many comments to the effect that the people acting excited, to the point of cheering and clapping, are overreacting, and possibly need to be examined, . I respectfully disagree. To see in person a tangible display of the the size and grandeur of the cosmos that surround us, is deeply impressive; revelatory even. On the contrary, I submit that between two people that have borne witness to our place in the universe, the one who fails to react immediately and viscerally is the one who needs to be examined.

Incremental Progress Part 4 – Towards the Shining Future

I have spent the last three parts of this series bemoaning various aspects of the cycle of medical progress for patients enduring chronic health issues. At this point, I feel it is only fair that I highlight some of the brighter spots.

I have long come to accept that human progress is, with the exception of the occasional major breakthrough, incremental in nature; a reorganization here paves the way for a streamlining there, which unlocks the capacity for a minor tweak here and there, and so on and so forth. However, while this does help adjust one’s day to day expectations from what is shown in popular media to something more realistic, it also risks minimizing the progress that is made over time.

To refer back to an example used in part 2 that everyone should be familiar with, let’s refer to the progress being made on cancer. Here is a chart detailing the rate of FDA approvals for new treatments, which is a decent, if oversimplified, metric for understanding how a given patient’s options have increased, and hence, how specific and targeted their treatment will be (which has the capacity to minimize disruption to quality of life), and the overall average 5-year survival rate over a ten year period.

Does this progress mean that cancer is cured? No, not even close. Is it close to being cured? Not particularly.

It’s important to note that even as these numbers tick up, we’re not intrinsically closer to a “cure”. Coronaviruses, which cause the common cold, have a mortality rate pretty darn close to zero, at least in the developed world, and that number gets a lot closer if we ignore “novel” coronaviruses like SARS and MERS, and focus only on the rare person who has died as a direct result of the common cold. Yet I don’t think anyone would call the common cold cured. Coronaviruses, like cancer, aren’t cured, and there’s a reasonable suspicion on the part of many that they aren’t really curable in the sense that we’d like.

“Wait,” I hear you thinking, “I thought you were going to talk about bright spots”. Well, yes, while it’s true that progress on a full cure is inconclusive at best, material progress is still being made every day, for both colds and cancer. While neither is at present curable, they are, increasingly treatable, and this is where the real progress is happening. Better treatment, not cures, is from whence all the media buzz is generated, and why I can attend a conference about my disease year after year, hearing all the horror stories of my comrades, and still walk away feeling optimistic about the future.

So, what am I optimistic about this time around, even when I know that progress is so slow coming? Well, for starters, there’s life expectancy. I’ve mentioned a few different times here that my projected lifespan is significantly shorter than the statistical average for someone of my lifestyle, medical issues excluded. While this is still true, this is becoming less true. The technology which is used for my life support is finally reaching a level of precision, in both measurement and dosing, where it can be said to genuinely mimic natural bodily functions instead of merely being an indefinite stopgap.

To take a specific example, new infusion mechanisms now allow dosing precision down to the ten-thousandth of a milliliter. For reference, the average raindrop is between 0.5 and 4 milliliters. Given that a single thousandth of a milliliter in either direction at the wrong time can be the difference between being a productive member of society and being dead, this is a welcome improvement.

Such improvements in delivery mechanisms has also enabled innovation on the drugs themselves by making more targeted treatments wth a smaller window for error viable to a wider audience, which makes them more commercially viable. Better drugs and dosaging has likewise raised the bar for infusion cannulas, and at the conference, a new round of cannulas was already being hyped as the next big breakthrough to hit the market imminently.

In the last part I mentioned, though did not elaborate at length on, the appearance of AI-controlled artificial organs being built using DIY processes. These systems now exist, not only in laboratories, but in homes, offices, and schools, quietly taking in more data than the human mind can process, and making decisions with a level of precision and speed that humans cannot dream of achieving. We are equipping humans as cyborgs with fully autonomous robotic parts to take over functions they have lost to disease. If this does not excite you as a sure sign of the brave new future that awaits all of us, then frankly I am not sure what I can say to impress you.

Like other improvements explored here, this development isn’t so much a breakthrough as it is a culmination. After all, all of the included hardware in these systems has existed for decades. The computer algorithms are not particularly different from the calculations made daily by humans, except that they contain slightly more data and slightly fewer heuristic guesses, and can execute commands faster and more precisely than humans. The algorithms are simple enough that they can be run on a cell phone, and have an effectiveness on par with any other system in existence.

These DIY initiatives have already caused shockwaves throughout the medical device industry, for both the companies themselves, and the regulators that were previously taking their sweet time in approving new technologies, acting as a catalyst for a renewed push for commercial innovation. But deeper than this, a far greater change is also taking root: a revolution not so much in technology or application, but in thought.

If my memory and math are on point, this has been the eighth year since I started attending this particular conference, out of ten years dealing with the particular disease that is the topic of this conference, among other diagnoses. While neither of these stretches are long enough to truly have proper capital-H historical context, in the span of a single lifetime, especially for a relatively young person such as myself, I do believe that ten or even eight years is long enough to reflect upon in earnest.

Since I started attending this conference, but especially within the past three years, I have witnessed, and been the subject of, a shift in tone and demeanor. When I first arrived, the tone at this conference seemed to be, as one might expect one primarily of commiseration. Yes, there was solidarity, and all the positive emotion that comes from being with people like oneself, but this was, at best, a bittersweet feeling. People were glad to have met each other, but still nevertheless resentful to have been put in the unenviable circumstances that dictated their meeting.

More recently, however, I have seen and felt more and more an optimism accompanying these meetings. Perhaps it is the consistently record-breaking attendance that demonstrates, if nothing else, that we stand united against the common threat to our lives, and against the political and corporate forces that would seek to hold up our progress back towards being normal, fully functioning humans. Perhaps it is merely the promise of free trade show goodies and meals catered to a medically restricted diet. But I think it is something different.

While a full cure, of the sort that would allow me and my comrades to leave the life support at home, serve in the military, and the like, is still far off, today more than ever before, the future looks, if not bright, then at least survivable.

In other areas of research, one of the main genetic research efforts, which has maintained a presence at the conference, is now closing in on the genetic and environmental triggers that cause the elusive autoimmune reaction which has been known to cause the disease, and on various methods to prevent and reverse it. Serious talk of future gene therapies, the kind of science fiction that has traditionally been the stuff of of comic books and film, is already ongoing. It is a strange and exciting thing to finish an episode of a science-fiction drama television series focused on near-future medical technology (and how evil minds exploit it) in my hotel room, only to walk into the conference room to see posters advertising clinical trial sign ups and planned product releases.

It is difficult to be so optimistic in the face of incurable illness. It is even more difficult to remain optimistic after many years of only incremental progress. But pessimism too has its price. It is not the same emotional toll as the disappointment which naive expectations of an imminent cure are apt to bring; rather it is an opportunity cost. It is the cost of missing out on adventures, on missing major life milestones, on being conservative rather than opportunistic.

Much of this pessimism, especially in the past, has been inspired and cultivated by doctors themselves. In a way, this makes sense. No doctor in their right mind is going to say “Yes, you should definitely take your savings and go on that cliff diving excursion in New Zealand.” Medicine is, by its very nature, conservative and risk averse. Much like the scientist, a doctor will avoid saying anything until after it has been tested and proven beyond a shadow of a doubt. As noted previously, this is extremely effective in achieving specific, consistent, and above all, safe, treatment results. But what about when the situation being treated is so all-encompassing in a patient’s life so as to render specificity and consistency impossible?

Historically, the answer has been to impose restrictions on patients’ lifestyles. If laboratory conditions don’t align with real life for patients, then we’ll simply change the patients. This approach can work, at least for a while. But patients are people, and people are messy. Moreover, when patients include children and adolescents, who, for better or worse, are generally inclined to pursue short term comfort over vague notions of future health, patients will rebel. Thus, eventually, trading ten years at the end of one’s life for the ability to live the remainder more comfortably seems like a more balanced proposition.

This concept of such a tradeoff is inevitably controversial. I personally take no particular position on it, other than that it is a true tragedy of the highest proportion that anyone should be forced into such a situation. With that firmly stated, many of the recent breakthroughs, particularly in new delivery mechanisms and patient comfort, and especially in the rapidly growing DIY movement, have focused on this tradeoff. The thinking has shifted from a “top-down” approach of finding a full cure, to a more grassroots approach of making life more livable now, and making inroads into future scientific progress at a later date. It is no surprise that many of the groups dominating this new push have either been grassroots nonprofits, or, where they have been commercial, have been primarily from silicon valley style, engineer-founded, startups.

This in itself is already a fairly appreciable and innovative thesis on modern progress, yet one I think has been tossed around enough to be reasonably defensible. But I will go a step further. I submit that much of the optimism and positivity; the empowerment and liberation which has been the consistent takeaway of myself and other authors from this and similar conferences, and which I believe has become more intensely palpable in recent years than when I began attending, has been the result of this same shift in thinking.

Instead of competing against each other and shaming each other over inevitable bad blood test results, as was my primary complaint during conferences past, the new spirit is one of camaraderie and solidarity. It is now increasingly understood at such gatherings, and among medical professionals in general, that fear and shame tactics are not effective in the long run, and do nothing to mitigate the damage of patients deciding that survival at the cost of living simply isn’t worth it [1]. Thus the focus has shifted from commiseration over common setbacks, to collaboration and celebration over common victories.

Thus it will be seen that the feeling of progress, and hence, of hope for the future, seems to lie not so much in renewed pushes, but in more targeted treatments, and better quality of life. Long term patients such as myself have largely given up hope in the vague, messianic cure, to be discovered all at once at some undetermined future date. Instead, our hope for a better future; indeed, for a future at all; exists in the incremental, but critically, consistent, improvement upon the technologies which we are already using, and which have already been proven. Our hope lies in understanding that bad days and failures will inevitably come, and in supporting, not shaming, each other when they do.

While this may not qualify for being strictly optimistic, as it does entail a certain degree of pragmatic fatalism in accepting the realities of disabled life, it is the closest I have yet come to optimism. It is a determination that even if things will not be good, they will at least be better. This mindset, unlike rooting for a cure, does not require constant fanatical dedication to fundraising, nor does it breed innovation fatigue from watching the scientific media like a hawk, because it prioritizes the imminent, material, incremental progress of today over the faraway promises of tomorrow.

[1] Footnote: I credit the proximal cause of this cognitive shift in the conference to the progressive aging of the attendee population, and more broadly, to the aging and expanding afflicted population. As more people find themselves in the situation of a “tradeoff” as described above, the focus of care inevitably shifts from disciplinarian deterrence and prevention to one of harm reduction. This is especially true of those coming into the 13-25 demographic, who seem most likely to undertake such acts of “rebellion”. This is, perhaps unsurprisingly, one of the fastest growing demographics for attendance at this particular conference over the last several years, as patients who began attending in childhood come of age.

Incremental Progress Part 3 – For Science!

Previously, I have talked some of the ways that patients of chronic health issues and medical disabilities feel impacted by the research cycle. Part one of this ongoing series detailed a discussion I participated in at an ad-hoc support group of 18-21 year olds at a major health conference. Part two detailed some of the things I wish I had gotten a chance to add, based on my own experiences and the words of those around me, but never got the chance to due to time constraints.

After talking at length about the patient side of things, I’d like to pivot slightly to the clinical side. If we go by what most patients know about the clinical research process, here is a rough picture of how things work:

First, a conclave of elite doctors and professor gather in secret, presumably in a poorly lit conference room deep beneath the surface of the earth, and hold a brainstorming session of possible questions to study. Illicit substances may or not be involved in this process, as the creativity required to come up with such obscure and esoteric concerns as “why do certain subspecies of rats have funny looking brains?” and “why do stressful things make people act stressed out?” is immense. At the end of the session, all of the ideas are written down on pieces of parchment, thrown inside a hat, and drawn randomly to decide who will study what.

Second, money is extracted from the public at large by showing people on the street pictures of cute, sad looking children being held at needle-point by an ominously dressed person in a lab coat, with the threat that unless that person hands over all of their disposable income, the child will be forced to receive several injections per day. This process is repeated until a large enough pile of cash is acquired. The cash is then passed through a series of middlemen in dark suits smoking cigars, who all take a small cut for all their hard work of carrying the big pile of cash.

At this point, the cash is loaded onto a private jet and flown out to the remote laboratories hidden deep in the Brazilian rainforests, the barren Australian deserts, the lost islands of the arctic and Antarctic regions, and inside the active volcanoes of the pacific islands. These facilities are pristine, shining snow white and steel grey, outfitted with all the latest technology from a mid-century science fiction film. All of these facilities are outfitted either by national governments, or the rich elite of major multinational corporations, who see to all of the upkeep and grant work, leaving only the truly groundbreaking work to the trained scientists.

And who are the scientists? The scientist is a curious creature. First observed in 1543 naturalists hypothesized scientists to be former humans transmogrified by the devil himself in a Faustian bargain whereby the subject loses most interpersonal skills and material wealth in exchange for incredible intelligence a steady, monotonous career playing with glassware and measuring equipment. No one has ever seen a scientist in real life, although much footage exists of the scientist online, usually flaunting its immense funding and wearing its trademark lab coat and glasses. Because of the abundance of such footage, yet lack of real-life interactions, it has been speculated that scientists may possess some manner of cloaking which renders them invisible and inaudible outside of their native habitat.

The scientists spend their time exchanging various colored fluid between Erlenmeyer flasks and test tubes, watching to see which produces the best colors. When the best colors are found, a large brazier is lit with all of the paper currency acquired earlier. The photons from the fire reaction may, if the stars are properly aligned, hit the colored fluid in such a way as to cause the fluid to begin to bubble and change into a different color. If this happens often enough, the experiment is called a success.

The scientists spend the rest of their time meticulously recording the precise color that was achieved, which will provide the necessary data for analyst teams to divine the answers to the questions asked. These records are kept not in English, or any other commonly spoken language, but in Scientific, which is written and understood by only a handful of non-scientists, mainly doctors, teachers, and engineers. The process of translation is arduous, and in order to be fully encrypted requires several teams working in tandem. This process is called peer review, and, at least theoretically, this method makes it far more difficult to publish false information, because the arduousness of the process provides an insurmountable barrier to those motivated by anything other than the purest truth.

Now, obviously all of this is complete fiction. But the fact that I can make all of this up with a straight face speaks volumes, both about the lack of public understanding of how modern clinical research works, and the lack of transparency of the research itself. For as much as we cheer on the march of scientific advancement and technological development, for as much media attention is spent on new results hot off the presses, and for as much as the stock images and characters of the bespectacled expert adorned in a lab coat and armed with test tubes resounds in both popular culture and the popular consciousness, the actual details of what research is being done, and how it is being executed, is notably opaque.

Much of this is by design, or is a direct consequence of how research is structured. The scientific method by which we separate fact from fiction demands a level of rigor that is often antithetical to human nature, which requires extreme discipline and restraint. A properly organized double-blind controlled trial, the cornerstone of true scientific research, requires that the participants and even the scientists measuring results be kept in the dark as to what they are looking for, to prevent even the subtlest of unconscious biases from interfering. This approach, while great at testing hypotheses, means that the full story is only known to a handful of supervisors until the results are ready to be published.

The standard of scientific writing is also incredibly rigorous. In professional writing, a scientist is not permitted to make any claims or assumptions unless either they have just proven it themselves, in which case they are expected to provide full details of their data and methodology, or can directly cite a study that did so. For example, a scientist cannot simply say that the sky is blue, no matter how obvious this may seem. Nor even can a scientist refer to some other publication in which the author agreed that the sky is blue, like a journalist might while providing citations for a story. A scientist must find the original data proving that the sky is blue, that it is consistently blue, and so forth, and provide the documentation for others to cross check the claims themselves.

These standards are not only obligatory for those who wish to receive recognition and funding, but they are enforced for accreditation and publication in the first place. This mindset has only become more entrenched as economic circumstances have caused funding to become more scarce, and as political and cultural pressure have cast doubts on “mainstream institutions” like academia and major research organizations. Scientists are trained to only give the most defensible claims, in the most impersonal of words, and only in the narrow context for which they are responsible for studying. Unfortunately, although this process is unquestionably effective at testing complex hypotheses, it is antithetical to the nature of everyday discourse.

It is not, as my colleague said during our conference session said, that “scientists suck at marketing”, but rather that marketing is fundamentally incongruous with the mindset required for scientific research. Scientific literature ideally attempts to lay out the evidence with as little human perspective as possible, and let the facts speak for themselves, while marketing is in many respects the art of conjuring and manipulating human perspective, even where such perspectives may diverge from reality.

Moreover, the consumerist mindset of our capitalist society amplifies this discrepancy. The constant arms race between advertisers, media, and political factions means that we are awash in information. This information is targeted to us, adjusted to our preferences, and continually served up on a silver platter. We are taught that our arbitrary personal views are fundamentally righteous, that we have no need to change our views unless it suits us, and that if there is really something that requires any sort of action or thought on our part, that it will be similarly presented in a pleasant, custom tailored way. In essence, we are taught to ignore things that require intellectual investment, or challenge our worldview.

There is also the nature of funding. Because it is so difficult to ensure that trials are actually controlled, and to write the results in such a counterintuitive way, the costs of good research can be staggering, and finding funding can be a real struggle. Scientists may be forced to work under restrictions, or to tailor their research to only the most profitable applications. Results may not be shared to prevent infringement, or to ensure that everyone citing the results is made to pay a fee first. I could spend pages on different stories of technologies that could have benefited humanity, but were kept under wraps for commercial or political reasons.

But of course, it’s easy to rat on antisocial scientists and pharmaceutical companies. And it doesn’t really get to the heart of the problem. The problem is that, for most patients, especially those who aren’t enrolled in clinical trials, and don’t necessarily have access to the latest devices, the whole world of research is a black hole into which money is poured with no apparent benefit in return. Maybe if they follow the news, or hear about it from excited friends and relations (see previous section), they might be aware of a few very specific discoveries, usually involving curing one or two rats out of a dozen tries.

Perhaps, if they are inclined towards optimism, they will be able to look at the trend over the last several decades towards better technology and better outcomes. But in most cases, the truly everyday noticeable changes seem to only occur long after they have long been obvious to the users. The process from patient complaints with a medical device, especially in a non-critical area like usability and quality of life, that does not carry the same profit incentive for insurers to apply pressure, to a market product, is agonizingly slow.

Many of these issues aren’t research problems so much as manufacturing and distribution problems. The bottleneck in making most usability tweaks, the ones that patients notice and appreciate, isn’t in research, or even usually in engineering, but in getting a whole new product approved by executives, shareholders, and of course, regulatory bodies. (Again, this is another topic that I could, and probably will at some future date, rant on about for several pages, but suffice it to say that when US companies complain about innovation being held up by the FDA, their complaints are not entirely without merit).

Even after such processes are eventually finished, there is the problem of insurance. Insurance companies are, naturally, incredibly averse to spending money on anything unless and until it has been proven beyond a shadow of a doubt that it is not only safe, but cost effective. Especially for basic, low income plans, change can come at a glacial pace, and for state-funded services, convincing legislators to adjust statutes to permit funding for new innovations can be a major political battle. This doesn’t even begin to take into account the various negotiated deals and alliances between certain providers and manufacturers that make it harder for new breakthroughs to gain traction (Another good topic for a different post).

But these are economic problems, not research. For that matter, most of the supposed research problems are simply perception problems. Why am I talking about markets and marketing when I said I was going to talk about research?

Because for most people, the notions of “science” and “progress” are synonymous. We are constantly told, by our politicians, by our insurers, by our doctors, and by our professors that not only do we have the very best level of care that has ever been available in human history, but that we also have the most diligent, most efficient, most powerful organizations and institutions working tirelessly on our behalf to constantly push forward the frontier. If we take both of these statements at face value, then it follows that anything that we do not already have is a research problem.

For as much talk as there was during our conference sessions about how difficult life was, how so very badly we all wanted change, and how disappointed and discouraged we have felt over the lack of apparent progress, it might be easy to overlook the fact that far better technologies than are currently used by anyone in that room already exist. At this very moment, there are patients going about their lives using systems that amount to AI-controlled artificial organs. These systems react faster and more accurately than humans could ever hope to, and the clinical results are obvious.

The catch? None of these systems are commercially available. None of them have even been submitted to the FDA. A handful of these systems are open source DIY projects, and so can be cobbled together by interested patients, though in many cases this requires patients to go against medical advice, and take on more engineering and technical responsibility than is considered normal for a patient. Others are in clinical trials, or more often, have successfully completed their trials and are waiting for manufacturers to begin the FDA approval process.

This bottleneck, combined with the requisite rigor of clinical trials themselves, is what has given rise to the stereotype that modern research is primarily chasing after its own tail. This perception makes even realistic progress seem far off, and makes it all the more difficult to appreciate what incremental improvements are released.

Incremental Progress Part 2 – Innovation Fatigue

This is part two of a multi-part perspective on patient engagement in charity and research. Though not strictly required, it is strongly recommended that you read part one before continuing.

The vague pretense of order in the conversation, created by the presence of the few convention staff members, broke all at once, as several dozen eighteen to twenty one year olds all rushed to get in their two cents on the topic of fundraising burnout (see previous section). Naturally this was precisely the moment where I struck upon what I wanted to say. The jumbled thoughts and feelings, that had hinted at something to add while other people were talking, suddenly crystallized into a handful of points I wanted to make, all clustered around a phrase I had heard a few years earlier.

Not one to interrupt someone else, and also wanting to have undivided attention in making my point, I attempted to wait until the cacophony of discordant voices became more organized. And, taking example from similar times earlier in my life when I had something I wished to contribute before a group, I raised my hand and waited for silence.

Although the conversation was eventually brought back under control by some of the staff, I never got a chance to make my points. The block of time we had been allotted in the conference room ran out, and the hotel staff were anxious to get the room cleared and organized for the next group.

And yet, I still had my points to make. They still resonated within me, and I honestly believed that they might be both relevant and of interest to the other people who were in that room. I took out my phone and jotted down the two words which I had pulled from the depths of my memory: Innovation Fatigue.

That phrase has actually come to mean several different things to different groups, and so I shall spend a moment on etymology before moving forward. In research groups and think tanks, the phrase is essentially a stand in for generic mental and psychological fatigue. In the corporate world, it means a phenomenon of diminishing returns on creative, “innovative” projects, that often comes about as a result of attempts to force “innovation” on a regular schedule. More broadly in this context, the phrase has come to mean an opposition to “innovation” when used as a buzzword similar to “synergy” and “ideate”.

I first came across this term in a webcomic of all places, where it was used in a science fiction context to explain why the society depicted, which has advanced technology such as humanoid robots, neurally integrated prostheses, luxury commercial space travel, and artificial intelligence, is so similar to our own, at least culturally. That is to say, technology continues to advance at the exponential pace that it has across recorded history, but in a primarily incremental manner, and therefore most people, either out of learned complacency or a psychological defense mechanism to avoid constant hysteria, act as though all is as it always has been, and are not impressed or excited by the prospects of the future.

In addition to the feeling of fundraising burnout detailed in part one, I often find that I suffer from innovation fatigue as presented in the comic, particularly when it comes to medical research that ought to directly affect my quality of life, or promises to in the future. And what I heard from other patients during our young adults sessions has led me to believe that this is a fairly common feeling.

It is easy to be pessimistic about the long term outlook with chronic health issues. Almost definitionally, the outlook is worse than average, and the nature of human biology is such that the long term outlook is often dictated by the tools we have today. After all, even if the messianic cure arrives perfectly on schedule in five to ten years (for the record, the cure has been ten years away for the last half-century), that may not matter if things take a sharp turn for the worse six months from now. Everyone already knows someone for whom the cure came too late. And since the best way to predict future results, we are told, is from past behavior, then it would be accurate to say that no serious progress is likely to be made before it is too late.

This is not to say that progress is not being made. On the contrary, scientific progress is continuous and universal across all fields. Over the past decade alone, there has been consistent, exponential progress in not only quality of care, and quality of health outcomes, but quality of life. Disease, where it is not less frequent, but it is less impactful. Nor is this progress being made in secret. Indeed, amid all the headlines about radical new treatment options, it can be easy to forget that the diseases they are made to treat still have a massive impact. And this is precisely part of the problem.

To take an example that will be familiar to a wider audience, take cancer. It seems that in a given week, there is at least one segment on the evening TV news about some new treatment, early detection method, or some substance or habit to avoid in order to minimize one’s risk. Sometimes these segments play every day, or even multiple times per day. In checking my online news feed, one of every four stories was something regarding improvements in the state of cancer; to be precise, one was a list of habits to avoid, while one was about a “revolutionary treatment [that] offers new hope to patients”.

If you had just been diagnosed with cancer, you would be forgiven for thinking that with all this seemingly daily progress, that the path forward would be relatively simple and easy to understand. And it would be easy for one who knows nothing else to get the impression that cancer treatment is fundamentally easy nowadays. This is obviously untrue, or at least, grossly misleading. Even as cancer treatments become more effective and better targeted, the impact to life and lifestyle remains massive.

It is all well and good to be optimistic about the future. For my part, I enjoy tales about the great big beautiful tomorrow shining at the end of the day as much as anyone. In as much as I have a job, it is talking to people about new and exciting innovations in their medical field, and how they can best take advantage of them as soon as possible for the least cost possible. I don’t get paid to do this; I volunteer because I am passionate about keeping progress moving forward, and because some people have found that my viewpoint and manner of expression are uniquely helpful.

However, this cycle of minor discoveries, followed by a great deal of public overstatement and media excitement, which never (or at least, so seldom as to appear never) quite lives up to the hype, is exhausting. Active hoping, in the short term, as distinct from long term hope for future change, is acutely exhausting. Moreover, the routine of having to answer every minor breakthrough with some statement to interested, but not personally-versed friends and relations, who see media hyperbole about (steps towards) a cure and immediately begin rejoicing, is quite tiring.

Furthermore, these almost weekly interactions, in addition to carrying all of the normal pitfalls of socio-familial transactions, have a unique capability to color the perceptions of those who are closest to oneself. The people who are excited about these announcements because they know, or else believe, it represents an end, or at least, decrease, to one’s medical burden, are often among those who one wishes least to alienate with causal pessimism.

For indeed, failing to respond with appropriate zeal to each and every announcement does lead to public branding of pessimism, even depression. Or worse: it suggests that one is not taking all appropriate actions to combat one’s disease, and therefore is undeserving of sympathy and support. After all, if the person on the TV says that cancer is curable nowadays, and your cancer hasn’t been cured yet, it must be because you’re not trying hard enough. Clearly you don’t deserve my tax dollars and donations to fund your treatment and research. After all, you don’t really need it anymore. Possibly you are deliberately causing harm to yourself, and therefore are insane, and I needn’t listen to anything you say to the contrary. Hopefully, it is easy to see how frustrating this dynamic can become, even when it is not quite so exaggerated to the point of satire.

One of the phrases that I heard being repeated at the conference a lot was “patient investment in research and treatment”. When patients aren’t willing to invest emotionally and mentally in their own treatment; in their own wellbeing, the problems are obvious. To me, the cause, or at least, one of the causes, is equally obvious. Patients aren’t willing to invest because it is a risky investment. The up front cost of pinning all of the hopes and dreams for one’s future on a research hypothesis is enormous. The risk is high, as anyone who has stupefied the economics of research and development knows. Payouts aren’t guaranteed, and when they do come, they will be incremental.

Patients who aren’t “investing” in state of the art care aren’t doing so because they don’t want to get better care. They aren’t investing because they either haven’t been convinced that it is a worthwhile investment, or are emotionally and psychologically spent. They have tried investing, and have lost out. They have developed innovation fatigue. Tired of incremental progress which does not offer enough payback to earnestly plan for a better future, they turn instead to what they know to be stable: the pessimism here and now. Pessimism isn’t nearly as shiny or enticing, and it doesn’t offer the slim chance of an enormous payout, but it is reliable and predictable.

This is the real tragedy of disability, and I am not surprised in the slightest that now that sufficient treatments have been discovered to enable what amounts to eternally repeatable stopgaps, but not a full cure, that researchers, medical professionals, and patients themselves, have begun to encounter this problem. The incremental nature of progress, the exaggeratory nature of popular media, and the basic nature of humans in society amplify this problem and cause it to concentrate and calcify into the form of innovation fatigue.

Incremental Progress Part 1 – Fundraising Burnout

Today we’re trying something a little bit different. The conference I recently attended has given me lots of ideas along similar lines for things to write about, mostly centered around the notion of medical progress, which incidentally seems to have become a recurring theme on this blog. Based on several conversations I had at the conference, I know that this topic is important to a lot of people, and I have been told that I would be a good person to write about it.

Rather than waiting several weeks in order to finish one super-long post, and probably forget half of what I intended to write, I am planning to divide this topic into several sections. I don’t know whether this approach will prove better or worse, but after receiving much positive feedback on my writing in general and this blog specifically, it is something I am willing to try. It is my intention that these will be posted sequentially, though I reserve the right to Mix that up if something pertinent crops up, or if I get sick of writing about the same topic. So, here goes.

“I’m feeling fundraising burnout.” Announced one of the boys in our group, leaning into the rough circle that our chairs had been drawn into in the center of the conference room. “I’m tired of raising money and advocating for a cure that just isn’t coming. It’s been just around the corner since I was diagnosed, and it isn’t any closer.”

The nominal topic of our session, reserved for those aged 18-21 at the conference, was “Adulting 101”, though this was as much a placeholder name as anything. We were told that we were free to talk about anything that we felt needed to be said, and in practice this anarchy led mostly to a prolonged ritual of denouncing parents, teachers, doctors, insurance, employers, lawyers, law enforcement, bureaucrats, younger siblings, older siblings, friends both former and current, and anyone else who wasn’t represented in the room. The psychologist attached to the 18-21 group tried to steer the discussion towards the traditional topics; hopes, fears, and avoiding the ever-looming specter of burnout.

For those unfamiliar with chronic diseases, burnout is pretty much exactly what it sounds like. When someone experiences burnout, their morale is broken. They can no longer muster the will to fight; to keep to the strict routines and discipline that is required to stay alive despite medical issues. Without a strong support system to fall back on while recovering, this can have immediate and deadly consequences, although in most cases the effects are not seen until several years later, when organs and nervous tissue begin to fail prematurely.

Burnout isn’t the same thing as surrendering. Surrender happens all at once, whereas burnout can occur over months or even years. People with burnout don’t necessarily have to be suicidal or even of a mind towards self harm, even if they are cognizant of the consequences of their choices. Burnout is not the commander striking their colors, but the soldiers themselves gradually refusing to follow tough orders, possibly refusing to obey at all. Like the gradual loss of morale and organization by units in combat, burnout is considered in many respects to be inevitable to some degree or another.

Because of the inherent stigma attached to medical complications, it is always a topic of discussion at large gatherings, though often not one that people are apt to openly admit to. Fundraising burnout, on the other hand, proved a fertile ground for an interesting discussion.

The popular conception of disabled or medically afflicted people, especially young people, as being human bastions of charity and compassion, has come under a great deal of critique recently (see The Fault in Our Stars, Speechless, et al). Despite this, it remains a popular trope.

For my part, I am ambivalent. There are definitely worse stereotypes than being too humanitarian, and, for what it is worth, there does seem to be some correlation between medical affliction and medical fundraising. Though I am inclined to believe that attributing this correlation to the inherent or acquired surplus of human spirit in afflicted persons is a case of reverse causality. That is to say, disabled people aren’t more inclined to focus on charity, but rather that charity is more inclined to focus on them.

Indeed, for many people, myself included, ostensibly charitable acts are often taken with selfish aims. Yes, there are plenty of incidental benefits to curing a disease, any disease, that happens to affect millions in addition to oneself. But mainly it is about erasing the pains which one feels on a daily basis.

Moreover, the fact that such charitable organizations will continue to advance progress largely regardless of the individual contributions of one or two afflicted persons, in addition to the popular stereotype that disabled people ought naturally to actively support the charities that claim to represent them, has created, according to the consensus of our group, at least, a feeling of profound guilt among those who fail to make a meaningful contribution. Which, given the scale on which these charities and research organizations operate, generally translates to an annual contribution of tens or even hundreds of thousands of dollars, plus several hours of public appearances, constant queries to political representatives, and steadfast mental and spiritual commitment. Thus, those who fail to contribute on this scale are left with immense feelings of guilt for benefiting from research which they failed to contribute towards in any meaningful way. Paradoxically, these feelings are more rather than less likely to appear when giving a small contribution rather than no contribution, because, after all, out of sight, out of mind.

“At least from a research point of view, it does make a difference.” A second boy, a student working as a lab technician in one of the research centers in question, interjected. “If we’re in the lab, and testing ten samples for a reaction, that extra two hundred dollars can mean an extra eleventh sample gets tested.”

“Then why don’t we get told that?” The first boy countered. “If I knew my money was going to buy another extra Petri dish in a lab, I might be more motivated than just throwing my money towards a cure that never gets any closer.”

The student threw up his hands in resignation. “Because scientists suck at marketing.”

“It’s to try and appeal to the masses.” Someone else added, the cynicism in his tone palpable. “Most people are dumb and won’t understand what that means. They get motivated by ‘finding the cure’, not paying for toilet paper in some lab.”

Everyone in that room admitted that they had felt some degree of guilt over not fundraising more, myself included. This seemed to remain true regardless of whether the person in question was themselves disabled or merely related to one who was, or how much they had done for ‘the cause’ in recent memory. The fact that charity marketing did so much to emphasize how even minor contributions were relevant to saving lives only increased these feelings. The terms “survivor’s guilt” and “post-traumatic stress disorder” got tossed around a lot.

The consensus was that rather than act as a catalyst for further action, these feelings were more likely to lead to a sense of hopelessness in the future, which is amplified by the continuously disappointing news on the research front. Progress continues, certainly, and this important point of order was brought up repeatedly; but never a cure. Despite walking, cycling, fundraising, hoping, and praying for a cure, none has materialized, and none seem particularly closer than a decade ago.

This sense of hopelessness has lead, naturally, to disengagement and resentment, which in turn leads to a disinclination to continue fundraising efforts. After all, if there’s not going to be visible progress either way, why waste the time and money? This is, of course, a self-fulfilling prophecy, since less money and engagement leads to less research, which means less progress, and so forth. Furthermore, if patients themselves, who are seen, rightly or wrongly, as the public face of, and therefore most important advocate of, said organizations, seem to be disinterested, what motivation is there for those with no direct connection to the disease to care? Why should wealthy donors allocate large but sill limited donations to a charity that no one seems interested in? Why should politicians bother keeping up research funding, or worse, funding for the medical care itself?

Despite having just discussed at length the dangers of fundraising burnout, I have yet to find a decent resolution for it. The psychologist on hand raised the possibility of non-financial contributions, such as volunteering and engaging in clinical trials, or bypassing charity research and its false advertising entirely, and contributing to more direct initiatives to improve quality of life, such as support groups, patient advocacy, and the like. Although decent ideas on paper, none of these really caught the imagination of the group. The benefit which is created from being present and offering solidarity during support sessions, while certainly real, isn’t quite as tangible as donating a certain number of thousands of dollars to charity, nor is it as publicly valued and socially rewarded.

It seems that fundraising, and the psychological complexities that come with it, are an inevitable part of how research, and hence progress, happens in our society. This is unfortunate, because it adds an additional stressor to patients, who may feel as though the future of the world, in addition to their own future, is resting on their ability to part others from their money. This obsession, even if it does produce short term results, cannot be healthy, and the consensus seems to be that it isn’t. However, this seems to be part of the price of progress nowadays.

This is the first part of a multi-part commentary on patient perspective (specifically, my perspective) on the fundraising and research cycle, and more specifically how the larger cause of trying to cure diseases fits in with a more individual perspective, which I have started writing as a result of a conference I attended recently. Additional segments will be posted at a later date.

Environmentalist Existentialist

Within the past several days, several of my concerns regarding my contribution to the environment have gone from troubling to existentially crippling. This has a lot to do with the recent announcement that the US federal government will no longer be party to the Paris Climate Agreement, but also a lot to with the revelation that my personal carbon footprint is somewhere between four and five times the average for a US resident, roughly nine times the average for a citizen living in an industrialized nation, about twenty five times the average for all humans, and a whopping forty seven times the target footprint which all humans will need to adopt to continue our present rate of economic growth and avoid a global cataclysm. Needless to say, this news is both sobering and distressing.

As it were, I can say quite easily why my footprint is so large. First, there is the fact that the house I live in is terribly, awfully, horrifically inefficient. With a combination of poor planning and construction, historically questionable maintenance, and periodic weather damage from the day I moved in, the house leaks energy like a sieve. The construction quality of the foundation and plumbing is such that massive, energy-sucking dehumidifiers are required to keep mold to tolerable minimums. Fixing these problems, though it would be enormously expensive and disruptive, would go some way towards slashing the energy and utility bills, and would shave a good portion of the excess off. By my back of the envelope calculations, it would reduce the household energy use by some 35% and the total carbon footprint by about 5%.

There is transportation, which comprises some 15-20% of the total. While there is room for improvement here, the nature of my health is such that regular trips by private motor vehicle is a necessity. Public transport infrastructure in my area is lacking, and even where it exists, is often difficult to take full advantage of due to health reasons. This points to a recurring theme in my attempts to reduce the environmental impact which I inflict: reducing harm to the planet always ends up taking a backseat to my personal health and safety. I have been reliably told that this is the way that it ought to be, but this does not calm my anxieties.

The largest portion of by carbon footprint, by an overwhelming margin, is the so-called “secondary” footprint; that is, the additional carbon generated by things one buys and participates in, in addition to things one does. So, for example, if some luxury good is shipped air mail from another continent, the secondary footprint factors in the impact of that cargo plane, even though one was not physically on said plane. This isn’t factored into every carbon footprint calculator, and some weight it differently than others. If I were to ignore my secondary footprint entirely , my resulting impact would be roughly equivalent to the average American (though still ten times where it needs to be to avoid cataclysm).

Of my secondary footprint, the overwhelming majority is produced by my consumption of pharmaceutical products, which, it is noted, are especially waste-prone (not unreasonably; given the life-and-death nature of the industry, it is generally accepted that the additional waste created by being cautious is worth it). Herein lies my problem. Even if I completely eliminated all other sources of emissions, the impact of my health treatments alone would put me well beyond any acceptable bounds. Expending fewer resources is not realistically possible, unless I plan to roll over and stop breathing.

The implications for my largely utilitarian moral framework are dire. If, as it seems, thirty people (or three average Americans) could live comfortably with the same resources that I expend, how can I reasonably justify my continued existence? True, this isn’t quite so clear cut as one person eating the food of thirty. Those numbers represent averages, and all averages have outliers. Carbon output reduction isn’t a zero-sum game, but rather a collective effort. Moreover, the calculation represents averages derived from current industrial processes, which will need be innovated on a systemwide level to make the listed goals achievable on the global level which is required to prevent cataclysm.

These points might be more assuring if I still had faith that such a collective solution would in fact be implemented. However, current events have called this into serious question. The Paris Climate Agreement represents a barest minimum of what needs to be done, and was specifically calibrated to have a minimal impact on economic growth. The United States was already ahead of current targets to meet its obligations due to existing forces. While this does reinforce the common consensus that the actual withdrawal of the US will have a relatively small impact on its contribution to environmental damage, it not only makes it easier for other countries to squirm their way out of their own obligations by using the US as an example, but also demonstrates a complete lack of the scientific understanding, political comprehension, and international good faith which will be necessary to make true progress towards averting future cataclysm.

That is to say, it leaves the burden of preventing environmental catastrophe, at least in the United States, in the hands of individuals. And given that I have almost as much (or, as it happens, as little) faith in individuals as I do in the current presidential administration, this means in effect that I feel compelled to take such matters upon myself personally. Carrying the weight of the world upon my shoulders is a feeling that I have grown accustomed to, particularly of late, but to have such a situation where these necessary duties are openly abandoned by the relevant authorities makes it seem all the more real.

So, now that I have been given the solemn task of saving the world, there are a few different possibilities. Obviously the most urgent problem for me is solving my own problems, or at least, finding a way to counteract their effects. For a decent chunk of cash, I could simply pay someone to take action on my behalf, either by planting trees, or offering startup cash for projects that reduce carbon emissions somewhere else in the world, so that the net impact is zero. Some of these programs also hit two birds with one stone by targeting areas that are economically or ecologically vulnerable, doing things like boosting crop yields and providing solar power to developing communities. While there is something poetic about taking this approach, it strikes me as too much like throwing money at a problem. And, critically, while these services can compensate for a given amount, they do not solve the long-term problem.

Making repairs and upgrades to the house will no doubt help nudge things in the right direction. Putting up the cash to properly insulate the house will not only save excess heating fuel from being burned, but will likely result in the house staying at a more reasonable temperature, which is bound to help my health. Getting out and exercising more, which has for a long while now been one of those goals that I’ve always had in mind but never quite gotten around to, particularly given the catch-22 of my health, will hopefully improve my health as well, lessening the long term detriments of my disability, as well as cutting down on resources used at home when indoors (digital outdoors may still outclass physical outdoors, but also sucks up a lot more energy to render).

This is where my efforts hit a brick wall. For as busy as I am, I don’t actually do a great deal of extraneous consumption. I travel slightly less than average, and like most of my activities, my travel is clustered in short bursts rather than routine commutes which could be modified to include public transport or ride sharing. A personal electric vehicle could conceivably cut this down a little, at great cost, but not nearly enough to get my footprint to where it needs to be. I don’t do a great deal of shopping, so cutting my consumption is difficult. Once again, it all comes back to my medical consumption. As long as that number doesn’t budge, and I have no reason to believe that it will, my carbon footprint will continue to be unconscionably large.

There are, of course, ways to play around with the numbers; for example, capping the (absurd) list price of my medications according to what I would pay if I moved back to Australia and got my care through the NHS (for the record: a difference of a factor of twenty), or shifting the cost from the “pharmaceuticals” section to the “insurance” section, and only tallying up to the out of pocket maximum. While these might be, within a reasonable stretch, technically accurate, I feel that they miss the point. Also, even by the most aggressively distorted numbers, my carbon footprint is still an order of magnitude larger than it needs to be. This would still be true even if I completely eliminated home and travel emissions, perhaps by buying a bundle package from Tesla at the expense of several tens of thousands of dollars.

The data is unequivocal. I cannot save the world alone. I rely on society to get me the medical supplies I require to stay alive on a daily basis, and this dependence massively amplifies my comparatively small contribution to environmental destruction. I feel distress about this state of affairs, but there is very little I can personally do to change it, unless I feel like dying, which I don’t, particularly.

This is why I feel disproportionately distressed that the US federal government has indicated that it does not intend to comply with the Paris Climate Agreement; my only recourse for my personal impact is a systematic solution. I suppose it is fortunate, then, that I am not the only one trying to save the world. Other countries are scrambling to pick up America’s slack, and individuals and companies are stepping up to do their part. This is arguably a best case scenario for those who seek to promote climate responsibility in this new era of tribalist politics.

The Antibiotic Apocalypse and You

Following up on the theme established inadvertently last week: I’m still sick, though on the whole, I’m probably not feeling worse, and possibly arguably marginally better. In an effort to avoid the creativity-shattering spiral that happens when I stop writing altogether, this week I will endeavor to present some thoughts on a subject which I have been compelled to be thinking about anyway: Antibiotics.

A lot of concerns have been raised, rightfully, over the appearance of drug-resistant pathogens, with some going so far as to dub the growing appearances of resistant bacteria “the antibiotic apocalypse”. While antibiotic resistance isn’t a new problem per se, the newfound resistance to our more powerful “tiebreaker” drugs is certainly a cause for concern.

In press releases from groups such as the World Health Organization and the Centers for Disease Control and Prevention, much of the advice, while sound, has been concentrated on government organizations and healthcare providers. And while these people certainly have more responsibility and ability to react, this does not mean that ordinary concerned citizens cannot make a difference. Seeing as I am a person who relies on antibiotics a great deal, I figured I’d share some of the top recommendations for individuals to help in the global effort to ward off antibiotic resistance.

Before going further, I am compelled to restate what should be common sense: I don’t have actual medical qualifications, and thus what follows is pretty much a re-hash of what other experts have given as general, nonspecific information. With this in mind, my ramblings are no substitute for actual, tailored medical advice, and shouldn’t be treated as such.

Before you’re put on antibiotics

1) Stay home when you’re sick

This one is going to be repeated, because it bears repeating. Antibiotic resistant strains spread like any other illness, and the single best way to avoid spreading illness it to minimize contact with other people. Whether or not you are currently infected with antibiotic-resistant illness; in fact, whether or not you even have an illness that is treatable by antibiotics; staying at home when you’re sick will help you get better sooner, and is the single most important thing for public health in general.

2) Wash hands, take your vitamins, etcetera.

So obviously the best way to deal with illness is to avoid spreading it in the first place. This means washing your hands frequently (and properly! Sprinkling on some room temperature water like a baptism for your hands isn’t going to kill any germs), preparing food to proper standards, avoiding contact with sick people and the things they come in contact with, eating all of your vegetables, getting your vaccinations, you get the picture. Even if this doesn’t prevent you from getting sick, it will ensure that your immune system is in fighting shape for if you do.

3) Know how antibiotics work, and how resistance spreads

Remember high school biology? This is where all that arcana comes together. Antibiotics aren’t a magical cure-all. They use specific biological and chemical mechanisms to target specific kinds of organisms inside you. Antibiotics don’t work on viruses because they aren’t living organisms, and different kinds of antibiotics work against different diseases because of the biological and chemical distinctions.

Understanding the differences involved when making treatment decisions can be the difference between getting effective treatment and walking away unharmed, and spending time in the hospital to treat a resistant strain. Antibiotic resistance is a literally textbook example of evolution, so understanding how evolution works will help you combat it.

Public understanding of antibiotics and antibiotic resistance is such a critical part of combating resistance that it has been named by the World Health Organization as one of the key challenges in preventing a resistant superbug epidemic.

4) Treat anyone who is on antibiotics as if they were sick

If someone is on antibiotics and still doesn’t feel or seem well (and isn’t at home, for some reason), you’re going to want to take that at face value and keep your distance. You can also kindly suggest that they consider going home and resting. If you become sick after contact with such persons, be sure to mention it to your doctor.

If they’re feeling otherwise fine, you want to treat them as if they were immunocompromised. In other words, think of how you would conduct yourself health-wise around a newborn, or an elderly person. Extra hand-washing, making sure to wipe down surfaces, you get the picture. If they’re on antibiotics preventatively for a chronic immunodeficiency, they will appreciate the gesture. If they’re recovering from an acute illness, taking these extra precautions will help ensure that they don’t transmit pathogens and that their immune system has time to finish the job and recover.

5) Never demand antibiotics

I’ll admit, I’m slightly guilty of this one myself. I deal with a lot of doctors, and sometimes when I call in for a sick-day consult, I get paired with a GP who isn’t quite as experienced with my specific medical history, who may not have had time to go through my whole file, and who hasn’t been in close contact with my other dozen specialist doctors. Maybe they don’t recognize which of my symptoms are telltale signs for one diagnosis or another, or how my immunology team has a policy of escalating straight to a fourteen day course, or whatever.

I sympathize with the feeling of just wanting to get the doctor to write the stupid prescription like last time so one can get back to the important business of wasting away in bed. However, this is a problem. Not everyone is as familiar with how antibiotics work and with the intricacies of prescribing them, and so too often when patients ask for antibiotics, it ends up being the wrong call. This problem is amplified in countries such as the United States where economics and healthcare policies make it more difficult for doctors to refuse. This is also a major issue with prescription painkillers in the United States. So, listen to your doctor, and if they tell that you don’t need antibiotics, don’t pressure them.

Bear in mind that if a doctor says you don’t need antibiotics, it probably means that antibiotics won’t help or make you feel any better by taking them either, and could cause serious harm. For reference, approximately one in five of all hospital visits for drug side effects and overdoses are related to antibiotics.

It should go without saying that you should only get antibiotics (or any medication, really) via a prescription from your doctor, but apparently this is a serious enough problem that both the World Health Organization and the Centers for Disease Control and Prevention feel the need to mention this on their patient websites. So, yeah. Only take the drugs your doctor tells you to. Never take antibiotics left over from previous treatment, or from friends. If you have antibiotics left over from previous treatment, find your local government’s instructions for proper disposal.

If you are prescribed antibiotics

1) Take your medication on schedule, preferably with meals

Obviously, specific dosing instructions overrule this, but generally speaking, antibiotics are given a certain number of times per day, spaced a certain number of hours apart, and on a full stomach. Aside from helping to ensure that you will remember to take all of your medication, keeping to a schedule that coincides with mealtimes will help space dosages out and ensure that the antibiotics are working at maximum efficiency.

Skipping doses, or taking doses improperly vastly increases both the likelihood of developing resistant pathogens, and the risk of side effects.

2) Take probiotics between dosages

Antibiotics are fairly indiscriminate in their killing of anything it perceives as foreign. Although this makes them more effective against pathogens, it can also be devastating to the “helpful bacteria” that line your digestive tract. To this end, most gastroenterologists recommend taking a probiotic in between dosages of antibiotic. Aside from helping your body keep up it’s regular processes and repair collateral damage faster, this also occupies space and resources that would otherwise be ripe for the taking by the ones making you sick.

3) Keep taking your antibiotics, even if you feel well again

You can feel perfectly fine even while millions of hostile cells linger in your body. Every hostile cell that survives treatment is resistant, and can go in to start the infection all over again, only this time the antibiotic will be powerless to halt it. Only by taking all of your antibiotics on the schedule prescribed can you ensure that the infection is crushed the first time.

Furthermore, even though you may feel fine, your immune system has been dealt a damaging blow, and needs time to rebuild its forces. Continuing to take your antibiotics will help ensure that your weakened immune system does not let potentially deadly secondary infections slip through and wreak havoc.

4) Stay Home and Rest

Is this message getting through yet?

If you are on antibiotics, it means your body is engaged in a struggle, and it needs all of your resources focused on supporting that fight. Even the most effective antibiotics cannot eliminate every hostile cell. You immune system plays a vital role in hunting down and eliminating the remaining pathogens and preventing these resistant strains from multiplying and taking hold. In the later stages of this fight, you may not even feel sick, as there are too few resistant cells to cause serious damage. However, unless all of them are exterminated, the fight will continue and escalate.

Ideally, you should stay at home and rest for as long as you are taking antibiotics. However, since antibiotics are often given in courses of fourteen and twenty one days, this is impossible for most adults. At a barest minimum, you should stay home until you feel completely better, or until you are halfway done with your course of antibiotics, whichever is longer.

If you do return to your normal routine while taking antibiotics, keep in mind that you are still effectively sick. You should therefore take all of the normal precautions: extra hand washing, wiping down surfaces, extra nutrition and rest, and the like.

5) If you don’t feel better, contact your doctor immediately

Remember: Antibiotics are fairly all or nothing, and once an illness has developed a resistance to a specific treatment, continuing that line of treatment is unlikely to yield positive results and extremely likely to cause increased resistance to future treatment. Obviously, antibiotics, like any course of treatment, take some time to take effect, and won’t make you feel suddenly completely better overnight. However, if you are more than halfway through your treatment course and see no improvement, or feel markedly worse, this could be a sign that you require stronger medication.

This does not mean that you should stop taking your current medication, nor should you take this opportunity to demand stronger medication (both of these are really, colossally bad ideas). However, you should contact your doctor and let them know what’s going on. Your doctor may prescribe stronger antibiotics to replace your current treatment, or they may suggest additional adjunctive therapy to support you current treatment.

Works Consulted

“Antibiotic resistance.” World Health Organization. World Health Organization, n.d. Web. 28 Apr. 2017. <http://www.who.int/mediacentre/factsheets/antibiotic-resistance/en/>.

Freuman, Tamara Duker. “How (and Why) to Take Probiotics When Using Antibiotics.” U.S. News & World Report. U.S. News & World Report, 29 July 2014. Web. 28 Apr. 2017. .

“About Antibiotic Use and Resistance.” Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, 16 Nov. 2016. Web. 28 Apr. 2017. <https://www.cdc.gov/getsmart/community/about/index.html>.

Commissioner, Office Of the. “Consumer Updates – How to Dispose of Unused Medicines.” U S Food and Drug Administration Home Page. Office of the Commissioner, n.d. Web. 28 Apr. 2017. <https://www.fda.gov/forconsumers/consumerupdates/ucm101653.htm>.

NIH-NIAID. “Antimicrobial (Drug) Resistance.” National Institutes of Health. U.S. Department of Health and Human Services, n.d. Web. 28 Apr. 2017. <https://www.niaid.nih.gov/research/antimicrobial-resistance>.

On 3D Printing

As early as 2007, futurists were already prophesying about how 3D-printers would be the next big thing, and how the world was only months away from widespread deployment. Soon, we were told, we would be trading files for printable trinkets over email as frequently as we then did recipes and photographs. Replacing broken or lost household implements would be as simple as a few taps on a smartphone and a brief wait. It is ten years later, and the results are mixed.

The idea of fabricating things out of plastics for home use is not new. The Disney home of the future featured custom home fabrication heavily, relying on the power of plastics. This was in 1957*. Still, the truly revolutionary part of technological advancement has never been the limited operation of niche appliances, but the shift that occurs after a given technology becomes widely available. After all, video conferencing in the loosest sense has been used by military, government, and limited commercial services since as early as World War II, yet was still considered suitably futuristic in media up until the early years of the new millennium.

So, how has 3D-printing fared as far as mass accessibility is concerned? The surface answer seems to be: not well. After all, most homes, my own included, do not have 3D printers in them. 3D-printed houses and construction materials, although present around the world, have not shaken up the industry and ended housing shortages; though admittedly these were ambitious visions to begin with. The vast majority of manufacturing is still done in faraway factories rather than in the home itself.

On the other hand, perhaps we’re measuring to the wrong standard. After all, even in the developed world, not everyone has a “regular” printer. Not everyone has to. Even when paper documents were the norm rather than online copies, printers were not universal for every household. Many still used communal library or school facilities, or else used commercial services. The point, as far as technological progress is concerned, is not to hit an arbitrary number, or even percentage of homes with 3D printers in them, but to see that a critical mass of people have access to the products of 3D printing.

Taking this approach, let’s go back to using my own home as an example. Do I have access to the products of 3D printing? Yes, I own a handful of items made by 3D printers. If I had an idea or a need for something, could I gain access to a 3D printer? Yes, both our local library, and our local high school have 3D printers available for public use (at cost of materials). Finally, could I, if I were so disposed, acquire a 3D printer to call my own? Slightly harder to answer, given the varying quality and cost, but the general answer is yes, beginner 3D printers can now be purchased alongside other hardware at office supply stores.

What, then, have been the results of this quiet revolution? One’s answer will probably vary wildly depending on where one works and what one reads, but from where I stand, the answer as been surprisingly little. The trend in omnipresent availability and endless customizability for items ordered on the internet has intensified, and the number of people I know who make income by selling handicrafts has increased substantially, but these are hardly effects of 3D printing so much as the general effects of the internet era. 3D printing has enabled me to acquire hard protective cases for my medical equipment. In commercial matters, it would seem that 3D printing has become a buzzword, much like “sustainable” and “organic”.

Regarding the measuring of expectations for 3D printing, I am inclined to believe that the technology has been somewhat undermined by the name it got. 3D printers are not nearly as ubiquitous as printers still are, let alone in their heyday, and I do not expect they will become so, at least not in the foreseeable future. Tying them to the idea of printing, while accurate in a technical sense, limits thinking and chains our expectations.

3D printers are not so much the modern equivalent to paper printers so much as the modern equivalents of fax machines. Schools, libraries, and (certain) offices will likely continue to acquire 3D printers for the community, and certain professionals will have 3D printers, but home 3D printing will be the exception rather than the rule.

The appearance of 3D printing provides an interesting modern case study for technologies that catch the public imagination before being fully developed. Like the atomic future of the 1950s and 1960s, there was a vision of a glorious utopian future which would be made possible in our lifetimes by a technology already being deployed. Both are still around, and do provide very useful services, but neither fully upended life as we know it and brought about the revolutionary change we expected, or at least, hoped for.

Despite my skepticism, I too hope, and honestly believe, that the inexorable march of technology will bring about a better tomorrow. That is, after all, the general trend of humanity over the last 10,000 years. The progress of technology is not the sudden and shiny prototypes, but the widespread accessibility of last year’s innovations. 3D printing will not singlehandedly change the world, nor will whatever comes after it. With luck, however, it may give us the tools and the ways of thinking to do it ourselves.

* I vaguely recall having seen ideas at Disney exhibits for more specific 3D-printing for dishes and tableware. However, despite searching, I can’t find an actual source. Even so, the idea of customized printing is definitely present in Monsanto’s House of the Future sales pitch, even if it isn’t developed to where we think of 3D-printing today.

Engineering Equality

If you didn’t know already, I occasionally advocate for causes I believe in. More rarely, I go so far as to actually volunteer to go meet with people. I am not exactly a people person, so I take these kinds of engagements quite seriously. One particular role I have played is acting as an effective salesperson for the Nightscout Foundation. Amid other things, one of the activities I do is show people how to build little battery powered LED lights from off-the-shelf hardware components. It’s meant to be a proof of concept, as our foundation is a maker-movement DIY group. The notion is that if you can assemble a simple LED with a little instruction, you have all the qualifications to go on and build anything. If you can build this, you can engineer your own solutions to your chronic illness.

For the adults and those who are interested in our foundation, it provides a great segue into talking about building your own treatment setups. For the kids and the casual observers, it’s a great feel-good moment and a pleasant memento. But being a DIY engineering project, even if a relatively simple and small scale one, has inspired a great variety of reactions in a great variety of people.

Some you might expect. For example, kids tend to be more enthralled with the idea of a fun project than the adults, who are by and large more interested in free stuff. These are trade shows where we’re presenting, after all. Some are a bit less expected though.

For one thing, I’ve distinctly noticed that some of our oldest visitors also seem to be the most interested in building something themselves. I had one elderly lady at the American Diabetes Association conference. She had a walker and wore an eyepatch on one eye, a pair of thick glasses over both. Her hands shook as she tried to grip the components. In her place, I might have well given up. Yet she persisted in doing it herself. Seeing the LED bulb light up, she herself lit up to match.

At the same conference was a man in a wheelchair. His hat proclaimed he was a Veteran of several different conflicts. He did not seem awfully happy to be at that particular conference on that day. Yet he was overjoyed to be able to build a simple little gadget, which he used to decorate his own wheelchair. After completing his first one, a red bulb, my mother pointed out that he ought to build a green bulb one as well, for port and starboard on his wheelchair. He agreed wholeheartedly. I don’t think I have ever seen a man more proud of his wheelchair.

Another demographic trend which I have noticed recently, which I would not have expected but perhaps should not be so surprised at: I have noticed that while children of both sexes participate in roughly equal numbers, on the whole, the girls have seemed more interested. It’s hard to quantify and difficult to explain, but I see more of that familiar gleam – that hope – when I give my whole spiel about being able to build anything.

This is of particular interest to me, because this anecdotal experience seems to be in line with some of the larger picture about STEM-related skills in American students. The data, which admittedly is still quite limited, has suggested that young girls may actually be better equipped in terms of scientific than their male counterparts, at least at a young age. This, despite overwhelmingly male-dominated workplaces in STEM fields.

There are of course other possibilities. Perhaps girls at trade shows are simply more interested because it is an arts and crafts project as much as an engineering one. Perhaps they see other people wearing their LEDs and don’t want to miss out on the latest fashion. But I don’t think so. Also, it’s worth nothing, none of these scenarios are mutually exclusive.

If this pattern is true, then it points to some very dark truths about our society and culture. It suggests that not only are we shortchanging women, and likely also many other traditionally marginalized groups, but from a technological development standpoint, we are robbing the world of their opportunity to improve life for everyone. Still, I remain hopeful. We can’t undo the past, and we can’t change our social order and culture overnight, but we can set a positive example and improve outreach. For my part, I intend to continue my work promoting DIY engineering solutions. Do It Yourself is, after all, completely gender neutral and inclusive.

The truth is that the solution to achieving genuine equality- between genders, ages, races, and all the other things that divide us – lies in enabling those that are interested and able to access the necessary resources to advance both themselves, and humanity as a whole. The solution to equality lies not in legislation, but in education. Only by encouraging self-motivated DIY engineers can we expect to achieve the egalitarian dream that we have for so long been promised.

Scientific Optimism

This past week I had the honor of attending Neil deGrasse Tyson’s 2016 Year in Review lecture alongside several comrades from our local astronomy club. While I’m not sure I can genuinely say I learnt anything I didn’t already know, it was nonetheless engaging to have the major successes and failures of the past year presented by one who has played such a large role in moving science into the popular vogue.

Science in pop culture was, in fact, one of the main topics of the lecture. The consensus reached was that while there remains a great deal to be done in terms of science literacy, being able to inspire people to be excited about scientific discoveries in the same way that people become excited about new blockbuster movies or the Oscars is a major step in reinvigorating the zeitgeist which enabled such massive leaps in scientific exploration and discovery of the 1960s and 70s. The photo above is from one such effort- Tyson’s cameo appearance in Zoolander 2.

There were, of course, less optimistic moments. Astrophysics has not been exempt from the slew of deaths that 2016 hath wrought, and concerns about the political situation, in particular the election of new leaders who have publicly denied scientific consensus on issues such as climate change and the origins of the cosmos, were overtly mentioned.

“Florida is basically at sea level, so Florida will be the first to go.” Tyson said in response, citing the elevation and terrain of the state in relation to rising sea levels. “That’s where his golf courses are. It’s going to be pretty hard for him to swim from hole to hole, and say it’s a Chinese hoax.”

While not exactly reassuring for the short term, this reflects the kind of quiet optimism that dominated the talk. It was reiterated that it does not particularly matter whether or not politicians deign to believe in scientific fact. Those who refuse to believe in observable phenomena will continue to be proven wrong. So long as they do not attempt to legislate their wrongness, or to use it to supplant the facts, he stated, we need not be particularly concerned with what others believe.

I have strongly mixed feelings about this attitude, as I fear it breeds complacency and elitism of the kind that has contributed to the political divide in this country, and which has been blamed partially for the rise of the “alt-right” and “post-truth” enclaves. In point of fact, I had the opportunity to discuss this point with a former member of the Clinton campaign shortly after the results of the election. I was adamant that it did not particularly matter the religious beliefs of those who had been elected; that it was their duty to govern based on the facts, and not what people claimed they wanted.

“That attitude is why Trump won.” He stated solemnly.

While I appreciate having faith that the scientific process will prevail, I think faith that people will always accept results is misplaced. Whether or not there is an objective truth to the universe one way or another, the fact remains that human observation and understanding of reality is colored and limited by our individual perceptions of reality. If human understanding, therefore, is limited by human perception, it is critical that we ensure that human perception is up to snuff.

While it may not be necessary for an absolute consensus on all subjects, if human progress is to be made most efficient, then it is necessary that enough people have an understanding of the facts to both make informed decisions on a political and social level, and to ensure the timely application of new discoveries on a technological and industrial level. In other words, in order for science and technology to genuinely improve our lives, it is required that they be widely understood enough to be applied. Prospective entrepreneurs need to be aware of technology in order to exploit it, and investors need to understand what there is to be gained by putting capital into cutting edge fields.

This, interestingly enough, was also touched upon in the talk, albeit not directly, when discussing the Nobel prizes awarded this year. The prizes awarded in physics had something to do with the geometric patterns of ultra-thin sheets of carbon; something which seems to most of us quite arcane and esoteric. To someone making a living in construction or farming, or even law or medicine, this work has no apparent application, and indeed might seem like a waste of effort to pursue; certainly not something work winning a Nobel prize over. Professor Tyson explained that this was precisely the same position that quantum physics was in through the first half of the 20th century. In contrast, today roughly a third of the world’s GDP relies directly on the discoveries of quantum physics.

In a perfect world, the truth would be easily recognizable when seen for the first time, and scientists and their followers could rest secure in the knowledge that their discoveries would be disseminated and understood without conscious effort. Unfortunately, we do not live in such a world. While I do fully expect that science and technology will continue advancing regardless of the sociopolitical climate, it remains paramount that we continue our efforts to ensure that the largest number of people are educated to a level to understand and participate in mankind’s drive for advancement. The battle for hearts and minds today is not merely a matter of determining research funding for the next four years, although this is certainly relevant; it is a matter of determining who will be in a position to make tomorrow’s next great discoveries and breakthroughs. It is in the interests of all humanity for that number of people to be as large as possible.

In closing, I would like to mention a brief incident which transpired towards the end of the event. Having finished with the main lecture, the floor was opened up to questions from the audience. A flamboyantly dressed man took the microphone, stating that he had “travelled over many thousands of miles” to present Dr. Tyson with a disc containing evidence he had collected while crossing the Nevada desert, of something in the sky “unlike any system we’ve ever seen”. The room was silent as the man explained that he had taken the evidence to various news outlets, and to NASA, all of whom had turned him away. Ever the scientist, Tyson explained that, while skeptical that such an alien phenomenon as the man seemed to imply would not have also been noticed by many others, he would nonetheless accept the disk and review it.

After the whole thing had finished, the astronomy teacher who had been with us asked us what we had taken away. My response was unequivocally that, should it come to pass in two weeks or so, that an announcement is made from NASA or the like regarding the discovery of extraterrestrial life, we would know that the man was right, and we would all have been present for a critical moment in scientific history. That notion is perhaps more inspiring than anything else that evening; that such a discovery could conceivably be made within our lifetime, and that, by being up to date and educated, we might be able to share in the new discovery. This is why I feel science literacy is critical to our future – because it will enable such terrific discoveries, and increase the likelihood that they will have a positive benefit on all of us.