# In extremis

It’s not frequent for a State of the Union address to delve into drug approval policy in any depth. Yet that’s exactly what President Trump did when, for the first time, he spoke publicly about legislation allowing terminally ill patients to access experimental treatments that have passed only FDA Phase I trials, often referred to as ‘right to try’ legislation:

We also believe that patients with terminal conditions should have access to experimental treatments that could potentially save their lives. People who are terminally ill should not have to go from country to country to seek a cure — I want to give them a chance right here at home. It is time for the Congress to give these wonderful Americans the ‘right to try’.

The Right to Try is unsurprisingly controversial. On one hand, patient groups see it as a chance to access treatments that are too far in the pipeline for them. It is hard not to have sympathy with this argument. It is especially hard for me to do so so, because my life was saved by an experimental drug that at the time did not have general approval for my condition, though it was known to be safe. At the same time, FDA Commissioner Scott Gottlieb is right to be skeptical about this policy effectively usurping the FDA’s authority to ensure that pharmaceuticals administered to all patients in the United States are safe and effective. Like all great moral quandaries, both sides are, to an extent, right.

### What is ‘right to try’?

Quite simply put, right to try laws allow terminally ill patients access to treatments, medications and devices that have passed FDA Phase I testing, but are not yet approved by the FDA. The libertarian Goldwater Institute, which has been pushing and lobbying for right to try, has created a model legislation, variants of which have by now been accepted by 38 states. It provides, in short, an exception for patients suffering from “advanced illness”, defined as

a progressive disease or medical or surgical condition that entails significant functional impairment, that is not considered by a treating physician to be reversible even with administration of current federal drug administration approved and available treatments, and that, without life-sustaining procedures, will soon result in death.1

Patients that qualify under this definition would then be allowed access to any treatment, pharmaceutical or device as long as it has passed Phase I testing,2 although the manufacturer or provider would be under no obligation to sell or provide that treatment to the patient.

### Ethical issues

The ‘right to try’ legislation is far from uncontroversial. @gorskon, whom I greatly respect even when I disagree with him, has gone so far as to call it a ‘cruel sham’ and a libertarian attack on the FDA, and his points merit consideration:

I’ve written many times before over the last three years about how “right-to-try” laws have swept the states. When last I wrote about right-to-try, 37 states had passed such laws over the course of a mere three years, and I observed at the time that it wouldn’t surprise me in the least if most or all of the remaining states were to pass such laws within the next year or two. Basically, the idea behind these laws is that the FDA is killing patients (I’m only exaggerating slightly) through its slow drug approval, overcaution, and bureaucratic inertia, or at least letting them die because life-saving drugs are being held up. So the idea, hatched by the Goldwater Institute was that terminally ill patients should have the “right-to-try” experimental drugs not yet approved by the FDA because they have nothing more to lose. Of course, it’s not true that they have nothing more to lose, but I’ll discuss that more later. Basically, right-to-try laws purport to allow the terminally ill “one last shot” by letting them access experimental therapeutics outside of FDA-sanctioned clinical trials. However, these laws operate under a number of false assumptions, not the least of which is the caricature of the FDA as being slow, inefficient, and unwilling to bend, as you will see. They also strip away a number of protections for patients, as you will also see.

While I am not sure I’m on board with the idea of there being a libertarian conspiracy to curb the FDA’s powers – especially given how limited the ambit of right to try legislations would be -, Orac makes an excellent point.

Much of the Goldwater Institute’s position is premised on the FDA being ‘slow’ and inefficient – as they like to present their case, they merely seek to remedy an instance of the state failing to serve citizens adequately. Speaking from personal experience, when you’re dying, everything is too slow and no approval process can come fast enough. It is hard not to have a lot of sympathy towards the patients who know there may be a promising drug in the pipeline but like Moses of old, they will never get to see the promised land. But realistically, the FDA is not slow – indeed, it is as fast as, or sometimes even faster, than regulatory agencies in many other countries.3

I would also add that the benefits of investigational therapies has rarely been particularly high, with only about 10% yielding a clinical improvement.4. For 90% of patients, then, the right to try would mean putting themselves through another round of torturous treatment instead of spending their last weeks or months focusing on appropriate symptom relief, quality of life and putting their affairs in order. In the end, these might be more important than a forlorn hope of extending one’s life by another few months.

Patients are subject to a high degree of informational asymmetry. When I had to decide between various treatments, I spent days on PubMed, reading every single study, building my own little mini-metaanalysis from my hospital bed. I was lucky – I had access to all the academic literature I could want and I was trained in evaluating that evidence. But most patients aren’t (and there’s no reason why they would be!),5 and what takes the place of sound knowledge is often less healthy. Patients may feel emotional pressure to try every treatment, however modest the chance of success: be it because they would feel that not doing so is ungrateful towards the doctors who ‘fought for them’, or because they feel they owe it to their family, the psychological pressure to try potentially ineffective treatments is immense, and might rob the patient from their chance to exercise some degree of autonomy over the last moments of their life.

### The reverse of the medal

At the same time, many note, respect for the patient’s autonomy should extend to allowing treatment that a competent patient wants, even if the physician disagrees. And, in addition, many argue that it would be paradoxical to allow patients to outright request physician-assisted suicide but not the administration of a treatment that may just save their lives. These arguments are not pointless, and any policy needs to justify why paternalism is particularly justified in this case, and while treatment would be inappropriate where suicide would be permitted.

More importantly, it is arguable that the absence of a ‘right to try’ leads to its own set of tragic adverse consequences, by directing patients to ‘try’ treatments in the unregulated sector of outright quackery. I had the distinct misfortune of witnessing one of these.

Jillian Mai Thi Epperly is an unqualified naturopathic healer with no educational background in nutrition who is running what she describes as a large-scale experiment on volunteers (aka marks). Her victims – around 30,000 – joined her Facebook group, which is closer to a cult than anything else, and consume vast quantities of a concoction that contains an unhealthy amount of salt and fermented cabbage juice. This is supposed to rid the body of ‘weaponised mutant candida and parasites’, which she claims is responsible for all or most pathological processes in the human body. Ms Epperly’s Facebook group is replete with images generally for the strong of stomach (including gut lining which her acolytes believe are parasites), but that’s nothing compared to the damage she has done to human lives. None is more tragic than the story of J. (name redacted in the interests of privacy), who is suffering from an unspecified cancer, and who was one of the biggest supporters of the ‘protocol’… until the placebo effect wore off, and she realised it is all a fraud. But valuable time spent on a miserable, painful treatment that bore no benefit, and might well accelerated J.’s disease progression.

There are, as we speak, thousands, if not millions, of Jillian Epperlys, peddling their fraudulent wares to an uninformed public. When the chips are down and conventional treatment options have been exhausted, patients will always turn to alternatives. With Right to Try, they could do so under medical supervision, adequately counseled and with their side effects managed. Moreover, the medications administered would have to adhere to standards of manufacture (GMP) and have a well-understood mechanism of action in most cases. There will always be desperate patients – and a well-designed Right to Try policy may keep them away from quacks and within the traditional medical system that would cater better for their needs and handle the transition from trying salvage/last-ditch treatments to palliative care and ensuring adequate end-of-life care.

Another undesirable aspect is the existence of an informal right to try. Darrow et al. describe the case of Josh Hardy, a 7-year-old boy who received the experimental antiviral drug brincidofovir after the media drew sufficient attention to his case for the manufacturer to ‘add’ Josh to an open-label study.6 Similarly, public sympathy for the aid workers from Samaritan’s Purse, including Kent Brantly, allowed for the use of the chimeric monoclonal antibody ZMapp. From the perspective of health equity, it is concerning that this informal procedure is amenable only to those with the means and connections to launch a massive social media campaign. In this sense, it is eerily reminiscent of the case of Sarah Murnaghan, whose lung transplant ineligibility was supervened by a large public campaign. It is fair to question whether the effects of a discretionary scheme that ultimately favours those with social, political and economic influence would not be better supplanted by a formal, equitable system available to all on equal terms.

### The light and the dark

I don’t normally discuss end-of-life policy or bioethics: my days in that field are long gone, and my priority now is to try to avert those situations. However, to me, Right to Try will always be more than an abstract issue. A few years ago, a last-ditch therapy ended up working so well, it saved my life and put me into remission. After failing two different treatment regimens, we were out of conventional options, and things looked bleak – until a dedicated consultant oncologist took on the drug manufacturer, the hospital board and even the government, so as to be allowed to administer a drug still not approved for the particular indication. It was a huge gamble, and it worked. I will forever be grateful for the chance I’ve been given – but I’m also aware that I was the exception, not the rule, and $n=1$ doth not a good rule make.

I believe that even if the current version of Right to Try is, as Orac says, a ‘cruel sham’, it does not inherently have to be so.

There is enormous potential in Right to Try policies, not only for patients but also for drug development and future patients. Well implemented, it does not have to be a cruel sham. Nor does it necessarily have to be a wholesale ouster of the FDA’s competence.

But if it is to be anything other than that, it has to come with a comprehensive institutional structure that ensures that consent is truly free and adequate. Crucially, an independent physician must be available to honestly explain the odds and assess the patient’s understanding and capacity.7 The process must focus on balancing respect for patient autonomy against a degree of paternalism needed to protect a vulnerable patient. And in the end, it is paramount to have a sensitive understanding of the potential pressures the patient is under. It is not an easy task. But it is not an impossible one.

Many states now speak of ‘death with dignity’ as a euphemism for physician-assisted suicide. Perhaps to some people, that indeed is dignity, and it is a choice that deserves consideration. It is not cowardice or refusal to fight. But what about patients whose concept of dignity would closer encompass ‘staying in the fight’? Whether it is right or wrong, the practice of physician assisted suicide has shown that true consent can be separated from impaired consent in such a difficult scenario. Why, then, would it be impossible to separate instances where the Right to Try would merely engender false hope from those where it might have a small but not unrealistic clinical chance to succeed?

In the end, one needs to be able to separate the present rules from the principle. The present rules, and much of the motivation behind it, are clearly imperfect. But the potential behind Right to Try is significant. Regulated Right to Try can curb quackery and unregulated charlatans preying on the incurably ill by providing more legitimate last-ditch treatments carried out under medical supervision. It can accelerate research without prejudicing patient welfare if the pharmaceutical manufacturer is kept at arm’s length. And maybe, just maybe, it can save lives.

The current legislative framework might not be there yet. But it has the potential to make a difference not just to research but for millions of patients who have exhausted all possibilities, who, like me, might strike gold. Just as the history of science is one of incremental development, procedures and practices should be given the chance to develop over time.

References   [ + ]

 1 ↑ Right to Try Model Legislation, sec.1(2)(a). 2 ↑ Ibid., sec.2(1). 3 ↑ Downing, N.S. et al. Regulatory review of novel therapeutics – comparison of three regulatory agencies. N Engl J Med 366:2284-2293. 4 ↑ Freireich, E.J. et al. The role of investigational therapy in management of patients with advanced metastatic malignancy. J Clin Oncol 27:304-306. 5 ↑ Woloshin S, Schwartz LM, Welch HG. Patients and medical statistics: interest, confidence, and ability. J Gen Intern Med 20:996-1000. 6 ↑ Darrow, J.J. et al. Practical, Legal and Ethical Issues in Expanded Access to Investigational Drugs. N Engl J Med 372:279-286. 7 ↑ In all honesty, I am not entirely sure that all too many patients in that emotionally and physically difficult situation are lucid enough to comprehend the entirety of what is involved in such a decision!

# Five years

Five years ago, the love of my life boarded a plane in DC and landed in London. She didn’t know what she was getting into, and I guess there were times that were beyond what she bargained for. Later that year, we got civilly married. She stood by me as I was recovering from a life threatening illness, she helped me find normalcy, and gave me the five best years of my life. Happy sort of anniversary, Katie. I love you to MACS0647-JD and back.

Taken on Jan 20, 2018 @ 00:00 near Budapest, Hungary, this photo was originally posted on my Instagram. You can see the original on Instagram by clicking here.

# The cult of suffering

In a recent tweet, @NewWorldHominin – also known as Lindsay Shepherd and famous for her very public conflict with her employer, Wilfrid Laurier University of Waterloo, Ontario, over showing a video of Jordan Peterson – posted a curious excerpt from Angela Nagle’s book Kill All Normies (what a title!), a short history of the most recent skirmishes in the online culture wars.1 Nagle writes:

[Progressive political scientist, activist and UPenn professor] Adolph Reed Jr. has often said liberals don’t believe in actual politics any more [sic], just ‘bearing witness to suffering’. The cult of suffering, weakness and vulnerability has become central to contemporary liberal identity politics, as it is enacted in spaces like Tumblr. It is also common … to openly identify themselves as having disabilities and mental health issues that make them, by their own admission, extremely vulnerable and suffering.

I am largely unconcerned with the political aspects of his statement. I am not a political scientist, and the politics of this issue are of no interest or concern to me.2 At the same time, society’s relation to pain, and the historical development of vulnerability and suffering, has been a pervasive interest of mine for most of my life. It is not entirely a matter of detached academic interest, either. I don’t normally talk about my own experience with pain: not only do I believe we all experience pain very differently and the neurophysiological processes involving afferent C fibres and all that jazz are only part of what we cognitively conceive of pain, but I’m also the product of a ‘boys don’t cry’ upbringing that shunned even really talking about all that. I have removed 3″ metal splinters from my upper arm and stitched up the resulting wound and went about my way, because, well, it was so normal. I have spent most of my life in severe – some would say excruciating – pain. Unlike the relatively simple pain of a nasty headache or a paper cut, chronic pain is not merely pain that takes longer to resolve, but an entirely different animal. And I have also devoted much of my life to alleviating pain and suffering, in various ways. It’s my subtle revenge on the imperfections of my physiology. Suffering, of course, is a somewhat different animal from pain, but not unrelated. And so, when reading Nagle discuss this ‘cult of suffering’, I was thinking about it partly as an individual witness to the phenomenon of pain – but also a witness to what a ‘cult of suffering’ indeed means to us as a society.

It is important, at this point, to delineate certain terms. When I refer to a ‘cult’ in this context, I am not referring to the modern meaning of the word – as a fundamentalist, often secretive and usually destructive religious movement. Nor am I referring to particular religious practices pertaining to a single deity or demigod, such as the Cult of Dionysius, the Eleusian Mysteries, the cult of Zeus Lykaios in Arcadia or the drug-fueled orgies of the Orphic Mysteries. Actually, most of these mystery religions eventually devolved into drug-fueled orgies that would have made 1970s Los Angeles blush, but that’s not what made them cults – they were ‘cults’ in the sense that they involved secret, set-apart mysteries reserved to the initiated and were in worship of a particular deity. This is closer to what we’re dealing with here, but it is not the relevant interpretation here, either.

Rather, I’m using the concept of a ‘cult’ to describe a set of social practices and methodologies intended to process some overwhelming human experience and integrate it into the way humans understood the world. The Orphic narrative, for instance, which retells the story of the poet Orpheus descending into the Netherworld to bring back Persephone to the land of the living, was an attempt to conceptualise and explain the changing seasons. The same death-rebirth aspect befell Bacchus, God of Wine, because grapes don’t grow all year, either. The ‘cultic’ part I’m concerned with is not about worshipping Bacchus or Persephone/Orpheus, but the fact that a set of notions – conventions, practices, songs, plays, narratives, actions, prayers, etc. – existed through which something cognitively-intellectually inconceivable was enacted communally, and thus, in a sense understood communally.

In that sense, a cult of suffering is not an inherently negative phenomenon. In fact, it is an acknowledgement that when someone is suffering, everybody can – and should – share in that suffering so that everybody could – and should – share in the healing. And there are, in fact, serious moral costs to not sharing this suffering as a community, to leaving the sufferer alone. No single work of human creation has tapped into the hidden heart of the human mystery of pain as profoundly as Sophocles’ Philoctetes, which in a sense deals exactly with what happens when the cult of suffering is absent. It is through understanding the cost of leaving the sufferer alone that we understand the importance and meaning and contribution of a cult of suffering to communal human existence.

### Wails from Lemnos (aka ‘oh God, not more Greek drama, please!’)

The Trojan War has been raging on for the best part of a decade. The siege has whittled away the best warriors of both sides. Patroclus is dead, and so is his friend Achilles. Hector is dead. Ajax has taken his life in shame. Everyone is weary of the war, and there seems to be no end in sight, just the tiresome, mindnumbing bloodshed of daily combat. Until one day, the seer Helenus, son of King Priam of Troy, was captured and forced to tell the Greek commanders that they will not be able to prevail against Troy unless and until they have the bow of Heracles.

The bow of Heracles was a legendary weapon, equipped with arrows dunked in the poison of the Hydra. They were awarded to the Greek warrior Philoctetes by a dying Heracles himself, for ending his suffering by lighting his funeral pyre.3 Years later, Philoctetes was part of the Greek host sailing to Troy to reclaim Helen. On the voyage to Troy, however, Philoctetes’s foot was bitten by a snake, causing a wound that continued to torment and fester but would not heal. For days, the Greeks were distressed by the stench of the wound, kept awake by the wails of Philoctetes and more than a little discomforted by the belief that such injuries were a sign of moral pollution – miasma – that would follow the Greek army and bring misfortune upon them. So, on the advice of Odysseus, the king of Ithaca and the Greek forces’ chief intelligence officer, one night they stranded Philoctetes on the unpopulated island of Lemnos – alone, with only his bow, and his suffering, his pain, his festering wound – and sailed on to Troy.

One can barely imagine Philoctetes’ anguish. For not only is he suffering physically, but also morally, wounded by the Greeks’ betrayal:4

PHILOCTETES:
Imagine my surprise when I awoke, the tears I shed, the sound of my sadness.

All of the ships in the fleet had vanished.
Alone with my infection, I knew only pain.
Time demanded that I scavenge for food with this sacred bow, which saved my life.

I would crawl through deep mud on stiff knees, scraping my rotten foot against rocks.
When water was scarce, I survived by collecting ice.
I spent cold winter nights without fire, but rubbing stones together for their spark, I saved myself from certain death.

The true tragedy of Philoctetes was not just his snakebite: it was his abandonment.5 And the Greeks’ betrayal, leaving a wounded comrade behind, echoes through the ages. Modern militaries often speak of ‘leaving no man behind’, because if there’s one way to compound pain, it is to do so by making the person suffer alone. It morally degrades the victim, but also the perpetrator.

Unlike most tragedies, Philoctetes does have something approaching a happy ending, or at least a resolution. Odysseus and Neoptolemus, the young and recently orphaned son of Achilles, sail to Lemnos to mend ties and restore the relationship between Philoctetes and the Greek army, although in a typical Odyssean underhanded manner. In the end, there is – with the divine intervention of Heracles himself – a reconciliation. That reconciliation is, importantly, communal: Philoctetes cannot heal unless he returns to his community, the Greek army at Troy, and the Greeks cannot ‘heal’ and prevail in battle unless they mend the ties with the suffering warrior they so disgracefully betrayed. The message here is that from certain wounds, we can only heal as a community: only through sharing what we have been through, through communal rituals of processing trauma, through the reintegration of the wounded or sick person into society can healing take place.

When Sophocles wrote Philoctetes, he was in his late 70s. He has served as a general at least twice, in a century of near-constant warfare. His actors were citizen-soldiers, and so was much of his audience – all of it in need of healing from the traumata of war, loss and grief. Theatre, as the Athenians practiced it, was not entertainment – it was social psychotherapy, a form of group psychodrama that allowed them to grieve and heal together. It was a cult of suffering in the best sense possible.

### Sharing and processing

The reason why Athenian drama therapy was so extremely successful was that it began with a highly egalitarian premise: we have all suffered, albeit in different ways, and we all deserve to heal. The primary objective was to expose traumatic histories to allow re-integration into society. It is often witnessed, for instance, that once a victim of a traumatic experience can narrate what happened to them, they gain a degree of control over it: they can conceive of themselves no longer as mere victims but as survivors and of the traumatic past not as a secret locked away in a hidden box of shame but something that they now have control over. We are narrative beings, and our principal way of asserting control over our experiences is to shape them into a narrative. That is trauma processing.

It is a fearsome process, and a fairly difficult one. For the longest time after surviving HLH, I have not been able to talk about it at all. I would perhaps mention occasional flashes of the crazy, sad, tragic yet sometimes hilarious experience that going through a nearly always terminal illness was in my early 20s. Self-deprecating humour and silly jokes6 alternated with moments of intense wistfulness and grief – one defensive mechanism yielding to the next. It wasn’t until I was able to – at the very least internally – tell my story from the beginning to its end, that I felt I could put this experience behind myself. First, I tried to recount it to myself, then to my beloved wife, who did exactly what I needed at the time: to be someone who listens. Processing trauma by verbalising it is scary because – once again, being the narrative creatures we are – it makes things a kind of real. The truly scary part about telling someone what happened to us is not that someone else will hear it – but that we, too, will hear it and have to accept it as real. A long time ago, working pro bono with survivors of political torture, I encountered an extremely polite and well-adjusted young man – almost a little too well-adjusted for what he’s gone through. And while he gave detailed narratives of what was done to him (I’ll spare you the details, but it was all kinds of horrid), he never used the word ‘torture’. Eventually, the staff psychologist picked up on this. Once she got him to reluctantly admit that he was indeed the victim of intense torture – in those words -, he broke down in tears that looked like they would never stop. He has faced the partial reality of his experience, but not the conceptual reality. Now, he had to process and own that part of his experience and his self-understanding. He had to adjust his self-understanding to include not merely the acts he was victim to, but also the notion of being a ‘torture victim’, with all that entailed for his personality.7

### Facebook dot com slash catharsis

The theatre of Dionysus Eleuthereus, where Sophocles’s celebrated plays were performed, where Athenians first heard the wails of Philoctetes and the mournful agony of Heracles in the Trachinae, could seat over 15,000 people. Around the 5th century BC, that would have amounted to 5% of the whole population of Attica and half to a third of the 30-50,000 or so free male citizens who had the right to vote. Just a stone’s throw from the theatre of Dionysus, on the slopes of the Acropolis, stood the asclepeion of Athens, a combination of a temple, hospital and hospice where the sick came to experience ‘katharsis’: purification through baths, purging, diets and even a predecessor of art therapy. It is no accident that the patients of the Athenian asclepeion were within earshot of the Theatre of Dionysus, where they experienced an entirely different kind of katharsis: the emotional katharsis of the theatre was seen as being as legitimately therapeutic as snakes and purgatives and poultices and salves. The 5th century BC Athenians might have accidentally invented psychodrama.

Now, with the growth of social networks, 15,000 members are hardly a number worth mentioning. People suffering from illnesses or social situations that hardly anyone in their vicinity would be likely to share could immediately find thousands, if not hundreds of thousands, of fellow sufferers. To many, this must be as liberating as Philoctetes escaping his captivity on Lemnos, where he was alone with his grief, sorrow and agony, and find instead literally thousands of fellow sufferers. For example, for a condition as relatively rare as Ehlers-Danlos Syndrome (total prevalence: around 1:5,000-40,000 live births depending on type)8, there is a major group with over 27,000 members and over a dozen groups with a membership exceeding 5,000 members. Even for relatively rare diseases, such as HLH (prevalence: 1:50,000 live births)9 groups with several thousand members exist. The purpose of these groups is only partially informative: since most of the members are subjective laypeople (patients or their relatives), better information is available on medical websites and open access journals. Rather, the principal purpose appears to be the creation of a community of sufferers (both those in the first degree, i.e. patients themselves, and those in the second degree, i.e. their caregivers, parents and relatives). Interactions typically focus less on discussing potential treatment options, but rather significantly more on inquiring whether others have experienced a particular side effect or reaction on one hand and validate people who are unsure about their symptoms and diagnoses. And while all this does have an informational aspect, the aspect of a community that subjectively understands is what motivates most people to participate in such discussions.

In many ways, this is an undoubtedly positive development. But while – especially for rare diseases10 – such communialisation of suffering can alleviate the tormenting isolation reminiscent of Philoctetes’ on Lemnos, there is a dark side to this phenomenon, too.

What happens when the communalisation of trauma, misfortune, disease or pain, from Sophoclean plays to Facebook support groups, becomes dysfunctional? It is worth mentioning three possible dysfunctions.

One, the Sophoclean way of communal processing of trauma took place among a heterogeneous population. Certainly, they shared some fundamental experiences, which made for a dramatic language intelligible to all. For instance, the majority of actors and most of the audience watching Ajax’s descent into madness have themselves served and recognized Ajax’s combat trauma – what we in our contemporary language would call PTSD. Certainly many of them knew enough about chronic illness to understand Philoctetes’s anguish. And when they heard the wails of the greatest hero of Greek mythology, the mighty Heracles himself, begging for death in Sophocles’ Trachinae, most could relate it to a similar experience with a dying loved one. But the essence of processing this experience was to do it communally. It was never meant to be an echo chamber. It was not a bunch of citizen-soldiers turned actors putting a play for themselves, but to the Athenian public at large. Unlike the Facebook groups that serve as the modern equivalents of publicly processing grief or anguish, the Ancient Greek drama was meant as a sort of silent dialogue. The audience might not have had anything to say, but they did have something to do. This was for their benefit, too, and their duty was to assist the communal processing of the dramatic experience. Their job was to be the very opposite of the Greek fleet that left Philoctetes suffering alone – their job was to show ‘compassion’, to suffer (‘passion’) with (‘com’) the protagonist. In a homogeneous population, the dynamics are vastly different. Not only is everybody a ‘victim’, those who are not are expressly excluded. There is no hope for reintegration – after all, there’s no interaction with the society to reintegrate with. There is beyond doubt much merit in victims and sufferers living and discovering an experience of community, where they themselves feel no longer alone. But that’s not the experience of katharsis, of healing and of reintegration that communal processing of trauma, between those who are suffering and those who are not, could offer.

Two, the narrative framework that facilitated this communal processing of trauma – that is, the play itself – was abstract for a good reason. The tales of woe that Greek drama shows are not every-day crises. They are irresolvably tragic like the situation of Antigone torn between divine or secular law, they’re almost grotesquely devastating as the fate of Oedipus or they involve, like Medea’s descent into madness, the loss of innocent, valuable lives for no good reason. No-one in Sophocles’ Athenian audience, however blighted by misfortune their lives, would be tempted to compete with the tragic heroes of Ancient Greece. Who would dare compare their fate to that of Ajax, Medea or Oedipus? And who could compete with Philoctetes’ decade-long solitude and agony? So final and devastating were these tragedies that they conveyed, through their absoluteness, the message that trauma is not a competition. The Greeks understood that each individual trauma is a little universe in and of itself, a little infinity, and there is no point in arguing whose corresponding experience was the worst. This allowed Greeks to maintain a sense of perspective: on one hand, quite likely none of them had it as bad as the tragic heroes, but at the same time, deep down, they shared the same struggles and pain and tragedies as the divine Heracles, the mighty Ajax and the great Philoctetes. There was no need for an Olympiad of suffering, because of the almost over-the-top nature of Greek tragic fates that were shocking even given the occasional bloodthirstiness of that civilization.11 Over-the-top tragedy allowed it to remain abstract, while at the same time elevating it to universality. Where traumatic processing becomes concrete, it loses the ability of its abstraction to provide meaning. It becomes a fragmented tale of individual, competing traumata.

Finally, communal processing of trauma was all about reintegration – it was about closing the door behind the traumatic experience in a sense, and in ‘coming home’ to society. Trauma – and by this, I also include adverse experiences that are not ordinarily thought of as traumatic: a severe illness, a difficult upbringing or a childhood spent on the wrong side of the tracks – alienates us from our host society. Many victims of trauma go so far as to perceive themselves as fundamentally ‘different’ from ordinary human society and experience trouble ‘fitting in’ among those who have not undergone the same experience. The purpose of Greek drama was not to rehash endlessly how broken and different the victims of severe trauma were, but to show them a way back to us, and us a way back to them. In the end, it was about what we had in common rather than about differences. When traumatic processing becomes dysfunctional, it becomes about remaining the ‘other’, the ‘traumatized person’, rather than the person who, with all their traumatic experiences, can no less be integrated into society. Communal processing of trauma does not encourage the development of a highly emphatetic ‘otherness’, a trauma-based self-identity, but advocates a way back to normal society.

### On bearing witness to suffering

Reed accuses liberals of ‘just bearing witness to suffering’. In this, I think, there’s a risk of missing the operative word – just. I doubt Reed would object to ‘bearing witness to suffering’. One of the greatest accomplishments of Ancient Greek drama was the validation of the suffering many in those societies have gone through. When citizen-soldiers watched Ajax or Philoctetes, both written by a retired general who knew the cost of teaching and making men inflict violence on others first-hand, they understood they weren’t alone. They understood that unlike the abandoned Philoctetes, they weren’t suffering on a desolate island, but that their pain and anguish were witnessed in some way. And that may have made all the difference.

But just bearing witness to suffering is not enough. For starters, as Reed alleges, it creates this cult of suffering and weakness.

As we have noted earlier, the term ‘cult’ should not necessarily invoke Waco or Jonestown. More subtly, a cult may just be about a shared ritual process, coupled with a shared identity. For instance, those who were inducted into the Eleusinian Mysteries, a mystery religion that evolved from an old farming cult of supplication for good crops, were not only, in a sense, chosen and identified themselves as part of this secret circle of people who could enter the mystery: they also shared a range of ritual practices (much of which involved getting hammered on kykeon, which was basically the ancient Greek version of LSD). Cults develop their own language, their own rules, their own habits, their own moral compass. The cult that Nagle refers to – the cult of ‘suffering, weakness and vulnerability – is no exception.

In a sense, this cult of ‘suffering, weakness and vulnerability’ is a dysfunctional form of communal processing. It is dysfunctional for three reasons:

• It’s self-enclosed and self-directed. It is not a publicly enacted interactive performance in which there is a dialogue with anyone. It is, at best, an echo chamber. Quite often, the language of ‘owned spaces’ and ‘safe spaces’ is used, to wit, the manifestations of these spaces – virtual or real – should be limited to those ‘initiated into the cult’. There are some legitimate scenarios in which this approach is encountered, e.g. when 12-step groups exclude non-addicts so as to afford addicts a chance to speak openly. But as a social performance, this is failing to build any bridges. Consider the recent trend among Tumblr users to explicitly bar other users from following them unless they, too, are ‘neuroatypical’, ‘disabled’ or some other minority. This creates a curious segregationism that ultimately impedes positive functional outcomes.
• Processing is always concrete and individual. Elizabeth Martinez coined the term ‘oppression Olympics’ as early as 1993,12 to describe the controversies that ensue when oppressed minority groups ‘compare’ or ‘rank’ their level of suffering. The genius of Sophoclean tragedy was altogether avoiding this, in two ways. One, the tragedy enacted on stage was so over the top that the audience could not possibly really relate (even in Athens in the 5th century BC, blinding oneself with one’s belt buckle for having accidentally committed incest towards one’s mother was rare enough that Sophocles had not to worry about someone in the audience one-upping poor Oedipus Rex). Two, the overall message of the drama was quite universal. The dramatic heroes fight not against particular forces or power structures that are in some way unique to their station in the world, but against universal human flaws and universal human failings: hubris, fate, ignorance, passion, betrayal. Everybody and nobody at the same time is invited to relate.
• Processing surpasses the emotional-cathartic and enters the political. The purpose of a Sophoclean drama was to help victims of trauma find their way back to society, and vice versa. It was, primarily, about reconciliation. It was not, at any point, about compensation, about change, about various political rights. The audience may have left with slightly shifted views about some moral issues through the emotional experience of the catharsis, but Sophocles was not Bertolt Brecht.

What Angela Nagle points out as a cult of suffering, weakness and vulnerability rests on two pillars. One of these is the rapid destigmatisation of illness, disability and in particular mental health issues over the last few decades. There is absolutely no doubt to me that this will be recalled as one of humanity’s greatest feats. Partly thanks to a better understanding of the neurobiology of mental illness and partly due to treatments that allow even those with severe mental illness to live productive and socially integrated lives, our outlook on mental vulnerability has changed. At the same time, thanks to various social media platforms such as Facebook, those affected by these issues could experience the ‘safe space’ of an echo chamber.

### Love bombing and the cultists of suffering

Ultimately, what Nagle describes as a ‘cult of suffering, weakness and vulnerability’ comes from an inadequate communal way of coping with experiences of suffering, weakness and vulnerability. In most cases, even if the underlying organic or psychiatric disorder is permanent, its effects in terms of suffering, weakness and vulnerability tend to be transient. As time goes on, patients build coping mechanisms that help them function in daily life. But within the dysfunctional ‘support groups’ over the internet, diagnoses are seen as immutable fates that are as part of one’s identity as one’s name or eye colour. The initial experience of being ‘understood’, especially for those suffering from a rare or misunderstood condition, can be overwhelmingly positive – indeed, so positive as to be addictive, and patients will gladly pay the price of not improving as the cost of remaining in this sheltered cocoon where – perhaps, sadly, often for the first time – the efforts it takes to complete every-day tasks with their conditions are appreciated. There is a bigger reward, however.

There exists a pathology known as ‘factitious disorder’ or ‘factitious and/or induced illness’ (FII). In FII, patients are aware they do not have a particular condition, but intentionally induce signs and symptoms to procure treatment. You may have heard it referred to as Munchausen’s Syndrome. It is a very controversial diagnosis, because it is hard to unambiguously separate whether people with FII suffer from a disorder no different from, say, BPD or major depression, or are just exploitative social parasites with a decent streak of sociopathy. People with FII leave a trail of broken people in their wake, theirtrust betrayed and their humanity brutally exploited, and as a consequence of the resulting stigma, we know less about FII than about any psychiatric condition. I recall first hearing about FII in a forensic psychiatry class, and I couldn’t possibly imagine why anyone would even do this. By then, I have been through a few bouts with serious illness, and to intentionally make oneself sick just made no darn sense to me. So after class, I grabbed my professor and asked him why people intentionally assume the sick role, often actually harming their own health.

“That’s the mystery,” he said. “We don’t know. There are so few confirmed cases, and even fewer are willing to talk about it. Why don’t you go and see what you can find?”

I did. I found virtually nothing, save for a small number of females who have been in treatment for FII for some years and offered a valuable insight into their thought process. One point I remember to this day was that while they initially did seek the attention that came from the sick role, what they really, really craved was the role of the ‘fighter’, the strong and resilient person who faces disease and trauma with courage. They wanted to be called brave. They wanted to be called fighters. And more than anything, they wanted someone to acknowledge their actions, praise them and tell them they could be proud of it.13

Many of these people came from broken families, and many in today’s cult of weakness come from a broken society. In this broken society, we haven’t decided how to treat young people: we give out participation trophies, but we are afraid to acknowledge true accomplishments lest the less accomplished feel offended. We tell young people they’re the future and they’re going to run the world someday, but we do not expect them to behave like that – and every leader’s education should start with service. We encourage young people to feel ‘pride’, but do not challenge them to accomplish things in which they could feel real pride. We praise every child, then we’re surprised that their self-esteem is low. It is low because kids aren’t idiots. In fact, they’re emotionally more sensitive due to their incomplete maturation of the frontal cortex. They know it’s all bullshit. They know that participation trophies are worthless. They know that they’re fed empty praise by parents and teachers who are scared of them, who are scared of the consequences of emotionally offending any child.14

And so, as they see through what Browning called the “forced praise on our part/ the glimmer of twilight“, they hunger for the genuine thing. They hunger for the politically incorrect thing of a first prize medal, for the verboten accomplishment of something at which most people fail, for the absolutely off-limits pride in themselves that can come from a tough job well done. People are willing to risk getting blown up for ridiculously low pay and stupid administrative burdens for a taste of a society that expects, demands and ranks mercilessly,15 because these things have been expunged from virtually everywhere.

If the sole way young people can find an identity that gives them value and through which they can feel appreciation is by claiming, pretending or role-playing to have various disadvantages, so that they would be measured with the lenient yardstick under which genuine praise betokens even completely mundane, every-day acts (and I can attest as a person with a disability that sometimes getting dressed feels like climbing Everest and going down to the shops, a daunting challenge!), we – and our parents’ generation, who have laid the groundwork for this state of affairs – need to have a conversation. We need to have a conversation on accomplishments, and the need for accomplishments for pride. We need to have a conversation about the fact that everyone is capable of accomplishments worthy of pride and honour. We need to have a conversation about the fact that we have a duty to communally process suffering – not just to witness it and write long-winded 2,200 word heart-wrenchers in Comment is Free but to engage with the existence of suffering, and with those who are going through it, and allow them to reconnect to the society of the ‘healthy’. We need to create a society that has more ambitions for people with disabilities than a socially and economically sidelined existence on benefits.

But more importantly, we need to have a conversation about the truth behind the lies.

### The truth in the lie

True to Nagle’s description, the temples of this cult of weakness – Facebook support groups, Tumblr, other networks – create an echo chamber of self-validating pain and vulnerability. This echo chamber is premised on an economy of reciprocity: because one would not want to be ‘invalidated,'16 it is only too logical that one would have to validate everyone. There’s an undercurrent of hatred and skepticism towards anyone who challenges these self-identifications, be it disability status reviews, rude bystanders asking often insensitive questions, or indeed the medical profession, who are seen as dismissive towards the ‘disabled’ and the ‘vulnerable’, a fortiori where those conditions are concerned that evidence-based medicine does not recognize or does not diagnose with a frequency that would satisfy the echo chamber of pain. In this ‘safe space’, they are safe from the greatest threat to their chosen identity: reality.

Ironically, this claimed vulnerability is often counterposited by superficial and frequently excessive expressions of self-assurance and ‘toughness’: whether expressed often through radical political activism relishing in a tone of over-the-top vulgarity, a personal appearance and self-expression seeking to stand apart from culture even more (consider e.g. the ‘cripple punk’ aesthetic a manifestation of this dynamic) and the rhetoric of war and violence to describe disability and illness (such as self-descriptions as ‘fighters’ and ‘warriors’ at war against their health issues), there is a paradoxical display of exaggerated and situation-inappropriately presented strength. It is as if within the echoing walls of the temples of this this cult, its adherents are not quite sure whether to whisper or to yell, uncertain of who and what they are: strong or weak, heroic or vulnerable, victims or warriors. This is, of course, not unusual – many people this pertains to are at the age or stage of psychosocial development where their self-identity is still in the process of coalescing, and ‘trying on’ identities, even quite contradictory ones in rapid succession, is a normal part of that. But this paradoxical attitude suggests that something deeper is at play, that however willingly the role of weakness and vulnerability is adopted, it is at odds with other fundamental underlying impulses.

Following those underlying impulses and the odd complexity of strength and frailty at the same time, it becomes apparent that the young people in these echo chambers that Nagle is talking about are definitely not lying or misguided about one thing: they are in distress. They are broken and vulnerable. They are broken and vulnerable products of a society and an educational system that left them in a state of anomie that in and of itself could and should merit a psychiatric diagnosis. They are desperately looking for roles in this society, and the cult of suffering is the only one that has openings for them. They are suffering from a lack of having the mere opportunity to build something to be proud of, to try themselves against the tallest mountains, to explore, to fight, to lose, to win, to get the odd bloody nose and yet come home grinning from ear to ear, with the pride that comes from accomplishment. They may not have the thirty-something psychiatric diagnoses and fifty-odd chronic conditions they claim (if you think those numbers are exaggerated, you should go on Tumblr!), but they are experiencing legitimate anguish, and claiming the roles of weakness and vulnerability is their idiom of distress; the distress of their betrayal by a society that never gave them the chance to be anything but the roles of weakness and vulnerability they ended up adopting.

And we need to help them in finding a more fulfilling part in a more rewarding play.

References   [ + ]

# “Yeah, but what is it you actually DO?” A friendly explainer.

People ask me what I do a lot. I used to say “I work with computers”, but I realized this would earn me an invite to check out broken routers or messed up Outlook installations. Sometimes, I told people I was an epidemiologist, and a few insisted on asking me about skin disorders (err no… that’s dermatology). And eventually, in my exasperation, I asked around on our computational epidemiology mailing list how others deal with this question.

Turns out there’s no good answer. And I mean that, to the point that some people would rather actually check on Aunt Velma’s busted router. “Public health worker” sounds like a social worker. “I’m a mathematician that’s interested in diseases” strikes people as weird at best. And “Oh… I’m into ebola and stuff” gets you on the no-fly list faster than you can say Elizabethkingia.

If we’re lucky, your audience will politely nod once told what you do, and if we’re super lucky, they might google it later on. That you’re looking at this website may mean one of four things:

1. You might be that exceptional lady or gentleman who did meet a computational epidemiologist, who handed you this link. Yay! You keep good company.
2. You may have heard of what we do – or that we even exist – for the first time. Excellent! The longest journey begins with a single step. Or so the fortune cookie from last night’s Mama Chang’s says.
3. You’ve been told you’re going to work with one of us, and you’re like ‘a whut?’. Cool! We’re a rare and endangered species, so please don’t shoot us.
4. You’ve been considering, or you’ve been voluntold,1 to go into the computational epidemiology field. That’s because you’re either an epidemiologist who is a bit of a geek or a geek who has a penchant for epidemiology. Welcome!

In the following, we’ll go over some of the basics of who we aren’t, what we do and how to care for your friendly neighbourhood computational epidemiologist, including some basic do’s and don’ts. With adequate care, your computational epidemiologist may live a long, happy life only occasionally punctuated by swearing at the command line. Let’s get started!

### Who we aren’t

To get this out of the way: computational epidemiologists are NOT infectious disease doctors (in fact, despite the name, epidemiology deals with all sorts of illnesses, including non-infectious ones!), most don’t have an MD, and no, most of us never wanted to be doctors. It’s not where ‘doctors who couldn’t hack it go’. That’s naturopathic medicine you’re thinking of.

We’re also, mostly, not field workers. Remember that movie where somebody brings home some zoonotic meningitis/flu hybrid from South East Asia and the whole world starts dying, and Kate Winslet plays an EIS officer? Well, while technically there are computationalists who do end up in the EIS, most of us prefer our subjects of study to be as far away from us as possible. Given that I study filoviridae in particular and their transmission dynamics in various simulated populations, I’m rather glad I can do so without ever having to see a filovirus. Not saying they’re not pretty (they do have their own kind of beauty), but I’d rather keep my distance from things that dissolve your cells, turn you into sludge and make you bleed out of orifices you didn’t know you could bleed out of.

We do, however, depend on field workers quite a bit – all the nice graph models we look at began life as a bunch of scared graduate students in Tyvek suits sweating their butt off and in laboured French/English/Swahili/Igbo/other language tried to ascertain whom the sickly-looking gentleman in the corner of the room has been in contact with over the last few weeks (that’s called ‘contact tracing’, and is one of the most indispensable yet one of the most tiresome parts of field epidemiology).

We’re also not infectious disease biologists, although if you’re really interested in how to create one that will kill a lot of people, ask a computational epidemiologist. They won’t answer, because you look shifty and anyone who asks questions like that shouldn’t know anyway, but we’re the ones to know.

### What we actually do

We’re in a somewhat ill-defined field. At the margins, we touch mathematics, statistics, bioinformatics, computer science and computability theory, genomics, medicine, public health and probably a dozen other fields I forgot about. Ultimately, the core of what we do is using (and improving and developing) computational methods to answer complex questions about health and sickness.

One surprising aspect when I talk to people is that we’re actually not only working with infectious diseases. I was bitten by the epidemiology bug2 when working on a Britain-wide project on predictive factors of heart disease. Epidemiologists also deal with obesity, drug use, workplace accidents and toxic exposure, radiation leaks and pretty much anything that can make you sick.3

The name does suggest an association with epidemics, but its roots are actually worth considering. Epidemiology is the art/science (logos) of what is ‘on’ (epi) the people (demos) – that is, the study of what has befallen the people. And an epidemic, of course, is something that befalls enough people that it might be worth considering as a population level phenomenon. The Greeks knew their thing when it came to naming stuff, and in a sense, this is brilliant naming, for it points out exactly what the great strength and the great weakness of epidemiology is: epidemiology is ‘good’ at answering questions about what’s going on with an entire population. It is notoriously less good at answering questions about what’s going on with an individual.

And so, when you tell an epidemiologist you have a sore throat, enlarged lymph nodes and a fever, they’ll tell you that statistically, you probably have acute bacterial pharyngitis caused by group A beta-hemolytic Streptococcus, aka ‘strep throat’. But statistically, you may also have infectious mononucleosis or lymphoma. That’s because if you look at a million patients with a sore throat, enlarged lymph nodes and a fever, most will indeed have acute bacterial pharyngitis (and most of those where a cause can be identified will have GABHS bacterial pharyngitis),4 and the rest will have an odd smattering of cases. Because on a population level, every patient is a Schrödinger’s Cat: until they get conclusively diagnosed, they have 80% bacterial pharyngitis, 15% mono, 3% lymphoma and 2% some weird bug the lab sees once a decade.5

The power of this kind of analysis becomes apparent when we do need to deal with a population at large rather than a small number of individual patients. This is the domain of public health, and that’s why epidemiologists and public health physicians are best of buddies.

Consider the following scenario. Every once in a while, someone is unintentionally exposed to HIV, the pathogen that causes AIDS. In some cases, a regimen of antiviral drugs administered right after the exposure (known as post-exposure prophylaxis or PEP) can reduce the likelihood of HIV remaining in the system and developing AIDS. However, the antivirals in PEP are both expensive and, well, fairly nasty drugs, with their own side effect profile. Should PEP be routinely offered? And for how long?

Enter epidemiology to save the day and answer the question. Based on studies about the likelihood that PEP will prevent seroconversion (being infected by HIV), studies about the per-thousand-doses risk of the antivirals used for PEP, data about PEP’s effectiveness and so on, a more coherent statistical picture can be constructed. This allows for the quantification of risks vs benefits in light of effectiveness and efficiency. Epidemiology can answer questions that literally save lives every day. It factors into individual health and treatment decisions, into the guidelines that govern care and into public health policies, such as the availability of neuraminidase inhibitors6 in a flu epidemic. It governs emergency responses, such as whether to respond to an outbreak by mass vaccination, ring vaccination, antivirals, isolation, quarantine or other measures. Ultimately, epidemiology is the art and science of using data to help physicians, public health officials and clinicians make the right decisions based on the right data.

### The computational part

There are lots of ways to categorise epidemiologists (and none of them will be encountered with much favour – we like being uncategorised, thanks!). Sometimes, epidemiologists are categorized by the disease area examined (e.g. oncoepidemiology or psychiatric epidemiology), by patient group (such as pediatric or perinatal epidemiology or geriatric epidemiology), disease type epidemiology (in particular, chronic illness epidemiology) and finally, categories that look at particular methods of epidemiological research. Molecular and genetic/genomic epidemiology, for instance, looks at the genetic correlates of sickness and health, and what genetic factors determine or predispose to particular conditions – or the lack thereof. Much of this is using association studies – studies in which medical histories and genotyping are correlated to determine what factors are most strongly associated with a particular outcome.7 Computational approaches are just another methodological category.

So what sets computationalists like me apart? We are concerned with using computational efficiency and mathematically efficient methods to deliver results. Our quest is no different from other epidemiologists, but our arsenal of tools is different. By using a combination of statistical, machine learning, geospatial, graph based and simulational tools (and whatever else we found in the kitchen sink), we can provide more accurate and detailed data to provide answers to questions that can prolong life, avoid side effects, alleviate suffering and help people live longer, healthier, more fulfilling lives.

Computational epidemiology grew out of the increasing digitization of health data – the volume of detailed health information in electronic medical records are a tremendous resource – and the rapid growth in high performance computational methods over the last few decades. The reason computational epidemiologists are trained in a uniquely interdisciplinary fashion, and are expected to be conversant with anything from linear algebra to graph theory, efficient tensor algorithm programming to computationally solving differential equations, from filoviridae to predicting zoonotic vectors, from modeling the spread of waterborne infections to mining Facebook – in short, just about anything and everything – is to be able to carry a toolbox as extensive as possible to tackle the widest range of challenges. Ultimately, we rarely encounter the same issue twice, and the ability to solve problems often has to do with combining the right tools in the right constellation for the job.

### The future

Computational epidemiology is a new profession, and yet every now and then, I get asked whether new developments in technology will make us someday obsolete.

No doubt there have been a lot of new developments in various fields of computer science and mathematics has given us some new tools to tackle challenges faster and better:

• Social networks provide a volume of data about individuals that together may predict disease trends, and web-scale databases can efficiently analyze it. An example of this is Google Flu, which uses search terms for flu-related concepts – things one with influenza-like illness would search for, such as ‘is it normal to use more than 250 tissues a day?’ – to gauge and estimate the expected disease severity in a particular region. The efficacy of Google Flu is controversial,8 but the approach is definitely one that has a future. Efficient web crawling is another aspect of this.
• Natural language processing helps analysing and interpreting unstructured, verbal information and allow analyses from unstructured data, such as news items or social media comments. NLP needs a lot of work as it currently stands, including the ability to understand non-literal language – irony, metaphor, etc.9 -, but it has gone an enormous way over the last decades and has become a workhorse of analysing medical and social data.
• Machine learning is a wide field, and it’s without doubt that the rising ML tide lifts our boats, too. Deep learning, for instance, has made levels of large genomic association studies (genome-wide association studies, GWASs) with thousands or even millions of dimensions possible10 that hitherto would have required vast computing power reserved only to a few major institutions.
• GPU based processing, together with the liberalization of access to computing power (consider AWS’s EC2 or Microsoft Azure), has opened up computationally intensive tasks to millions, and reduced the barriers of entry immensely by allowing pay-by-use instead of a massive upfront investment. The effect of this on our work cannot be underestimated.
• The recent developments in synthetic populations and large agent-based models have made simulations of massive numbers of people based on real population data possible. This is an incredible opportunity, as it allows simulations to be conducted with a statistically representative communication while safeguarding patient privacy. Agent-based models are enormously useful not only to predict but to test potential interventional scenarios.
• Graph databases can ‘organically’ represent relationship data, such as traced contacts. The result is the ability to perform searches (known as traversal in graph analysis lingo) over large networks in less time.
• Optimisation and algorithmic research, in particular trying to parallelise as many problems as possible, is accelerating what we do every day.

But in the end, most epidemiologists find their strength and resilience in the fact that they are helping other humans live better, healthier lives. Unlike clinicians and field epidemiologists, we may not meet individual patients too often. But at the end of the day, behind all the numbers is a shared endeavor by a massive web of interdependent professions, from clinicians through pharmacologists and lab techs to public health workers and us computational epidemiologists to help people, to make their lives healthier and to alleviate suffering. It’s why we pull the crazy hours. It’s why we spend long days away from those we love. It’s what keeps us going after failed simulation #889982984234. And I doubt any algorithm, AI or robot, however advanced, can find that in their hearts.

While a lot of what’s in this post is important and factually true, the tone is occasionally a little more tongue in cheek than you might be used to on this blog. This is a profession for the slightly insane. Talking about it without a degree of self-deprecating irony is as pointless as it’s impossible.

References   [ + ]

 1 ↑ Volunteering a la 12 Monkeys: “you, you and you!”. 2 ↑ That’s a metaphor. Epidemiologists are not made by insect bite, that’s Spider-Man. Epidemiologists are made, usually in small batches (use non-stick baking parchment and keep temperature below 250ºF). The process of creating decent epidemiologists has been engraved on the handle of John Snow’s pump. It hasn’t been seen since the 1854 London Cholera outbreak, sadly, so most of us have been winging it. Don’t complain, you’re still alive, right? 3 ↑ Controversially, this includes gun violence. Not to get into this fray, but epidemiology has neither the right tools nor the right approach to approach the tragedy of accidental and avoidable gun deaths and even less so for intentional and non-avoidable gun deaths. At some point, I’ll rant a little about how a lot of this has to do with the fact that when research money is at stake, everything looks like the kind of nail eminently suited for smashing by the hammer your working group came up with. Until then, I’ll stay quiet and try not to piss off too many people. 4 ↑ Note that because we don’t really bother with pharyngitis if it does the polite thing and goes away eventually, the definite cause of about a third of all cases of pharyngitis is never discovered. To put it in perspective: as the most frequent single pathogen causing bacterial pharyngitis, GABHS accounts for about 20% of all cases where the cause is known – in other words, ‘no known cause’ is still almost three times as frequent as the most frequent known bacterial cause! 5 ↑ These are not the real numbers, but you get the point. 6 ↑ Such as oseltamivir (Tamiflu), zanamivir (Relenza) and laninamivir (Inavir), used in the treatment of symptomatic influenza A and B infections. Controversially, their effectiveness is somewhat limited – at most, they cut off a few days off the disease length and for normal healthy patients, they may not make much of a difference -, but have pronounced side effects, some of which long outlast administration. At this point, meta-analyses show that in otherwise healthy patients, neuraminidase inhibitors do not have a favourable risk/benefit ratio. 7 ↑ A famous example is the case of PCSK9, a gene coding for a protein involved in lipoprotein homeostasis, which in turn is strongly correlated with heart disease and cardiac mortality. In familial hypercholesterolaemia, a heritable condition where people present with high cholesterol levels largely regardless of diet, a gain-of-function mutation of the PCSK9 protein is present. It was found that reducing the levels of PCSK9, such as by a targeted antibody that binds PCSK9 (the monoclonal antibodies evolocumab and alirocumab, for example), would reduce LDL (low density lipoprotein or ‘bad cholesterol’) and thus have cardiac benefits. In the end, so far, the effect has been quite modest compared to the exorbitant price tag, considering the much lower cost of statins that accomplish, more or less, the same purpose. 8 ↑ For a good summary, see Lazer, D., Kennedy, R., King, G., & Vespignani, A. (2014). The parable of Google Flu: traps in big data analysis. Science, 343(6176), 1203-1205. 9 ↑ Reyes, A., Rosso, P., & Buscaldi, D. (2012). From humor recognition to irony detection: The figurative language of social media. Data & Knowledge Engineering, (74)1-12. 10 ↑ Szymczak, S., Biernacka, J. M., Cordell, H. J., González‐Recio, O., König, I. R., Zhang, H., & Sun, Y. V. (2009). Machine learning in genome‐wide association studies. Genetic epidemiology, 33(S1).

# Are you looking for a data science sensei?

Maybe you’re a junior data scientist, maybe you’re a software developer who wants to go into data science, or perhaps you’ve dabbled in data for years in Excel but are ready to take the next step.

If so, this post is all about you, and an opportunity I offer every year.

You see, life has been very good to me in terms of training as a data scientist. I have been spoiled, really – I had the chance to learn from some of the best data scientists, work with some exceptional epidemiologists, experience some unusual challenges and face many of the day-to-day hurdles of working in data analytics. I’ve had the fortune to see this profession in all its contexts, from small enterprises to multi-million dollar FTSE100 companies, from well-run agile start-ups to large and sometimes pretty slow dinosaurs, from government through the private sector to NGOs: I’ve seen it all. I’ve done some great things. And I’ve made some superbly dumb mistakes.

And so, at the start of every year, I have opened applications for young, start-of-career data scientists looking for their Mr. Miyagi. Don’t worry: no car waxing involved. I will be choosing a single promising young data scientist and pass on as much as I can of my so-called wisdom. At the end, your skills will shine like Mr. Miyagi’s 1947 Ford Deluxe Convertible. There’s no catch, no hidden trap, no fees or charges involved (except the one mentioned below).

### Eligibility criteria

To be eligible, you must be:

• 18 or above if you are taking a gap year or not attending a university/college.
• You do not have to have a formal degree in data science or a relevant subject, but you must have completed it if you do. In other words: if you’re in your 3rd year of an English Lit degree, you’re welcome to apply, but if you’re in the middle of your CS degree, you have to wait until you’re finished – sorry. The same goes if you intend to go straight on to a data science-related postgrad within the year.
• Have a solid basis in mathematics: decent statistics, combinatorics, linear algebra and some high school calculus are the very minimum.
• You must be familiar with Python (3.5 and above), and either familiar with the scientific Python stack (SciPy, NumPy, Pandas, matplotlib) or willing to pick up a lot on the go.
• Be willing to put in the work: we’ll be convening about once every week to ten days by Skype for an hour, and you’ll probably be doing 6-10 hours’ worth of reading and work for the rest of the week. Please be realistic if you can sustain this.
• If, as recommended, you are working on an AWS EC2 instance, be aware this might cost money and make sure you can cover the costs. In practice, these are negligible.
• You must understand that this is a physically and intellectually strenuous endeavor, and it is your responsibility to know whether you’re physically and mentally up for the job. However, no physical or mental disabilities are regarded as automatically excluding you of consideration.
• You must not live in, reside in or be a citizen of any of the countries listed in CFR Title 22 Part 126, §126.1(d)(1) and (2).
• You must not have been convicted of a felony anywhere. This includes ‘spent’ UK criminal convictions.

Sounds good? Apply here.

### Preferred applicants

When assessing applications, the following groups are given preference:

• Persons with mental or physical disabilities whose disability precludes them from finding conventional employment – please outline this situation on the application form.
• Honourably discharged (or equivalent) veterans of NATO forces and the IDF – please include member 4 copy of DD-214, Wehrdienstzeitbescheinigung or equivalent document that lists type of discharge.

### What we’ll be up to

Over the 42 weeks to follow, you will be undergoing a rigorous and structured semi-self-directed training process. This will take your background, interests and future ambitions into account, but at the core, you will:

• master Python’s data processing stack,
• learn how to visualize data in Python,
• work with networks and graph databases, including Neo4j,
• acquire the correct way of presenting results in data science to stakeholders,
• delve into cutting-edge methods of machine learning, such as deep learning using keras,
• work on problems in computer vision and get familiar with the Python bindings of OpenCV,
• scrape data from social networks, and
• learn convenient ways of representing, summarizing and distributing our results.

The programme is divided into three ‘terms’ of 14 weeks each, which each consist of 9 weeks of directed study, 4 weeks of self-directed project work and one week of R&R.

### What you’ll be getting out of this

In the past years, mentees have noted the unusual breadth of knowledge they have acquired about data science, as well as the diversity of practical topics and the realistic question settings, with an emphasis on practical applications of data science such as presenting data products. I hope that this year, too, I’ll be able to convey the same important topics. Every year is a little different as I try to adjust the course to meet the individual participant’s needs.

The programme is not, of course, accredited by any accreditation body, but a certificate of completion will be issued to any participant who wishes so.

### Application process

Simply fill in the form below and send it off by 14 January 2018. The top contenders will be contacted by e-mail or telephone for a brief conversation thereafter. Finally, a lucky winner will be picked by the 21st January 2018. Easy peasy!

### FAQ

#### Q: What does ‘semi-self-directed’ mean? Is there a fixed curriculum?

A: No. There are some basic topics (see list above) that I think are quite likely to come up, but ultimately, this is about making you the data scientist you want to be. For this reason, we’ll begin by planning out where you want to improve – kinda like a PT gives you a training plan before you start out at their gym. We will then adjust as needed. This is not an exam prep, it’s a learning experience, and for that reason, we can focus on delving deeper and getting the fundaments right over other cramming in a particular curriculum.

#### Q: Can I bring your own data?

A: Sure. In general, we’ll be using standard data sets, because they’re well-known and high-quality data. But if you have a dataset you collected or are otherwise entitled to use that would do equally well, there’s no reason why we couldn’t use it! Note that you must have the right to use and share the data set, meaning it’s unlikely you’re able to use data sets from your day job.

#### Q: Will this give me an employment advantage?

A: I don’t quite know – it’s impossible to predict. The field of data science degrees is something of a Wild West still, and while some reputable degrees have emerged, others are dubious. Employers still don’t know what to go by. However, you will most definitely be better prepared for an employment interview in data science!

#### Q: Why are you so keen on presenting data the right way?

A: Because as data scientists, we’re expected to not merely understand the data and draw the right conclusions, but also to convey them to stakeholders at various levels, from plant management to C-suite, in a way that gets the right message across at the first go.

#### Q: You’re a computational epidemiologist. Can I apply even if my work doesn’t really involve healthcare?

A: Sure. The principles are the same, and we’re largely focusing on generic topics. You might be exposed to bits and pieces of epidemiology, but I can guarantee it won’t hurt.

#### Q: Why do you only take on one mentee?

A: To begin with, my life is pretty busy – I have a demanding job, a family and – shock horror! – I even need to sleep every once in a while. More importantly, I want to devote my undivided attention to a worthy candidate.

#### Q: How come I’ve never heard of this before?

A: Until now, I’ve largely gotten mentees by word of mouth. I am concerned that this is keeping some talented people out and limiting the pool of people we should have in. That’s why this year, I have tried to make this process much more transparent.

No.

No.

#### Q: I have more questions.

A: You can ask them here.

# Boyd and Ajax walk into a cubicle farm: a few thoughts about Rebels at Work

I’m gauged to tolerate more or less one management book a year. That’s not because I don’t care (I do) or because I pretend to know everything about leadership (I don’t and I don’t) or because there aren’t enough of them around (there are). Rather, most of them have very little to add to conventional wisdom and an abundance were written from a narrow perspective, and so, precious few have managed to speak to me. In my Grecian snobbery, the only work on leadership and management worth its salt was written by an Athenian general around 5th century BC, and is called Ajax. About which, later.

However, a number of epidemiologists I follow and respect – in particular, @DrBalsamAhmad, @PWGTennant and @statsmethods – have tweeted (twoth?) with approval of Rebels at Work, a book by Lois Kelly @loiskelly and Carmen Medina @milouness published by O’Reilly:

It sparked some very interesting comments, especially about a matter close to my heart: managing ‘moral frustration’ at work:

So I quickly procured a Kindle copy of the book, and devoured it in a single sitting, with copious annotations. That’s always a good sign.

Ms Medina’s name, of course, was immediately familiar1 – a career intelligence officer with three decades of service under her belt, she has served as the CIA’s DDI in the mid-noughties and finished her career with the Agency as the director of CSI, the Agency’s think tank. Closer to home, I knew her as the lady who took the enormous political risk to be among the first backers of Intellipedia, the US intelligence community’s shared wiki (and, in my humble opinion, one of the best things the US IC has come up with in a long, long time).2 Lois Kelly, meanwhile, has been a corporate consultant throughout most of her career.3 You couldn’t have picked two authors with more different backgrounds to write a book about prevailing with new ideas in rigid systems, yet their experiences coincide in the fulcrum of their book, Rebels at Work: both faced the tough challenge of bringing new ideas into bureaucratically petrified, change-resistant organisations. Their book is a culmination of their experiences, written for ‘Rebels at Work’: a field manual, so to speak, for waging maneuver warfare (or sometimes even guerrila warfare) against a larger, better equipped and solidly entrenched corporate infrastructure. The result is a book that has some great lessons despite ample space for criticism,4 and one that I kept mulling over long after devouring it in a single sitting. Instead of a review (there are plenty of those around and I’m not a great book reviewer), I’d prefer to focus on three points that, in my view, are missing from Ms Medina and Ms Kelly’s book.

### 40 Second Boyd’s Rebel Alliance

If there has ever been a rebel in a stolid, unbending institutional structure who paid a high price for being right the wrong way, it was Colonel John Boyd, affectionately known as the Mad Major, the Ghetto Colonel (he spent most of his money on books and the care of his son Stephen, who suffered from polio as a child) and 40 Second Boyd (for a standing bet that he could defeat any fighter pilot in simulated 1v1 air combat within forty seconds – a bet he never lost). There is much more to be told about Boyd than would fit into several blog posts, and fortunately, a better writer has taken it upon himself to write the seminal biography of the man who changed not just the art of air combat but of how we think about strategy.5 Boyd was a synthetic genius, one of the few people endowed with the talent to draw on fields as disparate as thermodynamics, genetics, the then-still-nascent field of neuroscience (he commented on neuronal plasticity in an 1987 presentation, despite having no formal education in the life sciences!), psychology and anthropology – and find connections that pass most of us by.6 His work on energy-maneuverability (E-M) theory informs fighter design to this day, and he made significant contributions to the development of the ‘left hook’ of Operation Desert Storm that left the Iraqi army demoralized, scattered and in vulnerable disarray.

And he was also what Scotsmen call crabbit. Boyd was devoted to flying, but not to the chain of command. His insubordinations are as legendary as his accomplishments. When his superiors refused to grant him the computer time he would require to prove by simulations his E-M theory, he and a civilian mathematician, Thomas Christie, ‘stole’ computer time on the Eglin AFB mainframe to build the models and prove that US fighter aircraft were inferior designs to Soviet aircraft. His reward for what would have saved thousands of pilots’ lives in the case of an actual air war between the superpowers was an investigation by the Inspector General.7 Boyd was irreverent, once referring to the Thunderbirds (the USAF’s demonstration squad) as ‘trained monkeys’, and was fiercely politically incorrect before political correctness was a thing.

At the same time, he had a fierce loyalty towards the men who served with him. Alongside Christie, he had his own ‘rebel alliance’, jocularly dubbed the Fighter Mafia by Italian-American test pilot Col. Everest Riccioni. And he knew very well the cost of being part of the rebel alliance: this we know from a speech he often gave to young officers he thought about inviting into his alliance. It is, at this point, worth repeating.8

[O]ne day you will come to a fork in the road,” [Boyd] said. “And you’re going to have to make a decision about which direction you want to go.” He raised his hand and pointed. “If you go that way you can be somebody. You will have to make compromises and you will have to turn your back on your friends. But you will be a member of the club and you will get promoted and you will get good assignments.” Then Boyd raised his other hand and pointed another direction. “Or you can go that way and you can do something – something for your country and for your Air Force and for yourself. If you decide you want to do something, you may not get promoted and you may not get the good assignments and you certainly will not be a favorite of your superiors. But you won’t have to compromise yourself. You will be true to your friends and to yourself. And your work might make a difference.” He paused and stared into the officer’s eyes and heart. “To be somebody or to do something. In life there is often a roll call. That’s when you will have to make a decision. To be or to do. Which way will you go?

The fact is that while we’d all like to be the rebels that eventually prevail, there’s no such guarantee. There most definitely is no guarantee that being a rebel, however well one plays the game, will be easy. A Rebel at Work is, quintessentially, an insurgent. Even a good, successful insurgency is a pain to carry out well. And that is provided you’re one of the few insurgencies that win.

And so, perhaps the idea of this ‘rebel alliance'9 lies uneasy with me because if things don’t turn out well – and however closely Ms Medina and Ms Kelly’s guidance is followed, success is never guaranteed! -, there’s more than one’s own welfare at stake. And like Boyd did, the honourable thing is to make sure that they know what the likely consequences of failure are.

Because not every rebellion wins. And if you’re drawing others into your rebellion, you’ll have to be able to live with what happens to them, too.

A few years ago, I had the singular pleasure to discuss Boyd with one of his last living collaborators and a few devotees of “Genghis John”, and one question came up repeatedly: how different would things have been had Boyd had a slightly more subtle sense of social interaction? How different would our world be if Boyd had somehow had Ms Medina and Ms Kelly’s book? As a scientist and an experimentalist, I am somewhat torn. On one hand, many of Boyd’s ideas could have been adopted earlier if he had cultivated a more positive personality. But at the same time, what if much of the substance of his ideas flowed directly from those negative features of his demeanor, the ones that made him a ‘bad rebel’: irascibility, a sizeable ego even for a fighter pilot, prone to outbursts of rage, the kind of obsessiveness that drove him to teach himself entire subjects from whatever books he could scrounge from the base library and, of course, his preternatural talent of alienating people. It is no accident that despite his illustrious track record and lasting developments, he never rose to general officer rank and in a final act of contempt, the DoD sent a single general officer to his funeral, despite his vast contribution to winning the first Gulf War mere six years earlier. Would a nicer Boyd have come up with E-M? Was his obsessiveness, a result of his socially alienating perspective and ensuing solitude, the fulcrum around which his genius leveraged? It is clear to me what Ms Medina and Ms Kelly would say – I’m just not sure as to the evidential basis. ‘Good’ rebels have an easier time (eventually), but I am not as willing to discount the ability of ‘bad rebel’ traits to produce worthwhile, yea crucially important, things as the authors are.

### Ajax meets HR

The greatest work on management and leadership was written and first performed at some point around 2,450 years ago. It was written by a general in his late 50s who, besides his military career, had a hold and an understanding of the human psyche few others since then have been able to even approach. It takes place towards the end of the Trojan War, immediately after the death of the Greek hero Achilles at the hands of the Trojan Paris. And over the years, I have often required my reports/subordinates to read it and often implored my superiors and COs, too, to (re)acquaint themselves with it.10 But what relevance is a two-and-a-half-millennia old play about warriors to modern corporate culture and Rebels at Work?

Early on in the book, Ms Medina and Ms Kelly identify traits of ‘good’ and ‘bad’ rebels at work. In particular, they associate anger, pessimism, obsessiveness and alienating others as traits of ‘bad’ rebels at works. And they’re right. Those traits will not get you particularly far. Nobody listens to angry voices and pessimism. You don’t want to be the departmental obsessive. And you most definitely don’t want to alienate the uncommitted – you’ll need that Rebel Alliance at some point.

But these points have particularly hit home because I’ve seen this tetrad too often, in history and in real life: anger, pessimism, hostility and a near-obsessive adherence to things that make sense to few others. They’re the hallmark symptoms of what psychiatrist Jonathan P. Shay called moral injury.11

Moral injury is what happens when what Shay referred to as themis is violated. Themis is one of those beautifully untranslatable Greek cultural artifacts – with a meaning of “order”, “moral rightness” and “the way things ought to be”. Or, as he most beautifully put it, it is the “social morality of what’s right”, “the normal adult’s cloak of safety”.12

Shay is, of course, speaking in the context of trauma, specifically combat PTSD. It is his thesis that combat PTSD happens when a traumatic experience is accompanied with moral injury. But moral injury doesn’t need a traumatic event to accompany it. It happens every day, in boardrooms, in offices, in cubicle farms, much as it happened on the sands of Troy’s shore, amidst the Greek camp, during the events that inspired Sophocles’ Ajax.

The quintessential moral injury Ajax suffers is betrayal of what he believes is themis. Rightly or wrongly, he believes that as not merely the strongest warrior of the Greeks after Achilles but also the warrior whose acts had a character of self-endangering altruism – he was referred to as the ‘shield’ of the Greeks as he protected other warriors behind him -, he would be due the armour of the fallen Achilles. Nor is he entirely wrong – it is clearly implied that this would have been the ordinary way of doing things. But instead, Odysseus convinces the Greek leadership to award Achilles’s gear based on a competition that clearly favours him, including one in rhetoric – not exactly Ajax’s forte. The tragedy that ensues is nothing short of heartbreaking. The altruistic warrior who sheltered other soldiers with his own body now slaughters the Greeks’ sheep and shepherds – a quintessentially antisocial act, not merely taking lives but also depriving the Greek army of valuable supplies. In the end, Ajax – despite the entreaties of his war-bride Tecmessa – commits suicide: once again an act not merely against himself but also against the Greeks, a final act of vengeance, depriving them of one of their most decorated warriors.

What Ms Medina and Ms Kelly call ‘bad rebels’ might not be ‘bad rebels’ – they might suffer from the moral injury of a chain of command, violating institutional, individual and communal themis. The risk of Ms Medina and Ms Kelly’s identification of bad vs good rebels is twofold: on one hand, it blames the victim of moral injury for its natural effects – on the other, it relieves a deeply flawed chain of command of responsibility. The effects may not be as bloody as Ajax’s end, but they may well be as morally, individually and personally devastating.

To be quite clear: the authors do get it. Or, in the words of Ms Medina:

With their experience, they no doubt are aware that some frustration is endogenous and some frustration is exogenous. My sole apprehension is that there are precious few tools and tactics to differentiate these situations – and this is not the book’s fault, but a consequence of the underlying problem’s sheer complexity. To perfectionists suffering in a work environment pervaded by ‘moral injury’, it may be impossible to consider that the true problem is outside one’s cranium, and having witnessed the torment of the ensuing frustration, it is crucial for rebels to learn when they’re in a situation that defies the normal approach.

Perhaps the greatest strength, besides the vastly differing perspectives Ms Medina and Ms Kelly that form a truly unique synthesis of viewpoints, is an inherent understanding throughout that ‘good rebels’ are not self-directed: they’re organizationally directed. Much like Boyd’s promise to his acolytes-to-be, what’s on offer is not glory and immediate satisfaction but hard work and, if all goes well, organizational level success. I’ve touched on the small-scale aspect of this earlier, when I considered that however indispensable a Rebel Alliance is, it also means we’re betting others’ careers, livelihoods and well-being on how we do our job. I’m sure that Ms Medina and Ms Kelly would agree with me: being a rebel at work is an exacting task with very little margin for error. But there’s a different scale of responsibility involved in rebellion: responsibility for self.

There’s a common concept in modern (post-WW I) military strategy known as Auftragstaktik or mission command in the English sphere of military education.13 Mission command is similar to what is known in software development as ‘declarative programming’: instead of providing a list of imperatives (orders, instructions), an end result is specified and the unit in question gets to figure out how to best accomplish it. This is often discussed in the context of decentralized command: instead of micromanaging units from a far-off regimental HQ, commanders can issue objectives and lower-level leadership, who are closer to the objective, can make the small-scale decisions with much better and much more accurate information straight from the vicinity of the objective. Instead of regimental HQ specifying from which side to assault a position, the platoon or company actually carrying out the mission can adapt to rapidly changing circumstances right there, on the ground.

The vulnerability of mission command is that if the leadership – or just a crucial element – of a unit gets incapacitated, all hell can break loose. This was witnessed quite often during the Vietnam War, where Viet Cong snipers targeted officers and radio operators to incapacitate command and control.14 On Twitter, discussing Rebels at Work and the fact that sometimes, cynicism is a legitimate idiom of distress to the kind of moral injury discussed in the previous section, Barney Hammond (@bhammond) hit the nail on its head:

And perhaps as far as being a rebel goes,15 that is a tough dilemma to resolve: when do we owe it to our Rebel Alliance to put the oxygen mask on ourselves first? Rebels at work, as the authors correctly identify, are organizationally-altruistically minded, sometimes even to the point of self-deprecation and putting themselves last. But it is exactly that attitude that needs to be tempered by what Barney so acutely pointed out: sometimes, we need to put the oxygen mask on first before helping others. To find this sensitive balance is not going to be easy – and I would not be surprised if most rebels at work would, once they have gathered their Rebel Alliance, struggle with finding the right balance between self-care and altruism.

### In lieu of a conclusion

Reading Rebels at Work was a pleasant disappointment. It is a practical book, with actionable steps and things to think about – in that sense, it is a book that demands to be worked on. And the discerning reader can take a lot away – especially if years of struggling against corporate rigidity has left them wondering whether they’re even cut out for this role. Learning how to navigate some of the processes the authors describe has taken me long years and some restless nights and – I won’t lie – more than a few tears shed. In reality, Ms Medina and Ms Kelly’s book is not so much a handbook for rebels but a field manual for launching an insurgency – a sort of asymmetric warfare guide for waging 4th generation warfare (4GW) against slow-moving Prussian line infantry armed with muskets but vastly superior in numbers. And that perhaps is the most laudable feature of their book: it’s not about surviving as a NOC16 rebel in a hostile organisation, but about openly accomplishing ambitious goals by building a network of support (the Rebel Alliance), exploiting critical actors, tending to your assets (see the part about the oxygen mask) and integrating one’s own desired objectives with pre-existing organizational commitments.

It was somewhat surprising to me to see so many epidemiologists discuss this book on Twitter – I mean, surely most of us do not work in a rigid, corporate framework that would necessitate us putting on our Rambo headbands and jungle camo face paint and go full-on tactical. Until, of course, I realized that as public health workers, we’re passionate by nature. Apathy doesn’t sit well with a job that is ultimately intended to save lives. And there aren’t many books that are so even-keeled about keeping a balance between operating within the system while pursuing what is right, even in circumstances where the institutional structures aren’t supportive of those goals. And so, to epidemiologists, public health workers and all those in the wider field working to save lives, this book might just be the best three hours you’ll spend reading during the holidays.

Boyd himself often pointed out that nothing – not even his own presentations – should be taken as gospel truth. To me, Rebels at Work leaves three questions open, and they are indeed quite unsettling.

1. How do we differentiate between a ‘bad rebel’ (for whom the adequate response is primarily corrective) and a ‘good rebel’ suffering the kind of moral injury Shay discussed in the paper op cit.?
2. As scientists, we’re bound to ask: what if the features of being a ‘bad rebel’ are necessary for some products of the mind? Consider the example of Boyd.
3. Finally, how do we know when to prioritize ourselves and when to prioritize our Rebel Alliance?

The collaboration between the authors having been so successful, I would not be surprised if we were to see some answers to these questions in a sequel. I, for one, will definitely be looking forward to it.

### An afternote

A mere hour or so after I posted this on my Facebook page, Lois Kelly posted this poignant message and kindly gave permission for me to repeat it here:

Thanks for such a thoughtful analysis and good questions. In my experience and research with Rebels at Work, “bad” rebel behaviors are sometimes necessary and useful. (My outrage and anger has propelled me in such positive ways.) A school superintendent of a big city school system here in the US told me that to cram as much change through the bureaucracy before his contract ended he had to go fast and embrace the “bad” behaviors. He knew he would alienate people and be disliked and he knew the children, teachers and principals would benefit. Playing a short game differs from the long game, which is important to understand. As for prioritizing between ourselves and the cause: we have to always be practicing resiliency (and I do mean practice) to manage our energy, sense making abilities, and relationships. The saddest stories I’ve heard are from people who ruined their marriages and friendships because of their obsession with their work/cause — and then didn’t achieve what they wanted at work anyway. Self-compassion is especially invaluable.

Lois makes two fantastic points here, both worth some thinking. One of these is, of course, that what’s good or bad might be context-dependent, in the example she mentions, conditional on time: or to say it all in warfighteresque, some targets call for a careful, slow approach while others require a degree of violence of action. More important, however, is her point on ‘practicing resiliency’. I know this because I’ve been there myself, so caught up with what my mission was at the moment that I lost track of many other things in life, and I’m quite sure that if my wife weren’t the steadfast angelic presence she is in my life, it could all have ended badly. I have seen way too many people who sacrificed their home base for fleeting objectives that some of them can’t even really remember anymore. I saw a shocking number of these cases when I was briefly working in Big Law. It reinforces another important rule of land warfare: know your stronghold, protect it, defend it and do not risk it for fleeting advantages.

To us in fields where there’s something larger at stake – be it the wellbeing of one’s unit, the fate of a company employing thousands, the health of millions relying on us doing our job well or indeed the very security of our nation -, it’s easy to find a justification for neglecting our stronghold: our friendships, marriage and our relationship with ourselves as expressed through self-compassion. This is a particular risk to altruists, and most epidemiologists do have a core of pure altruistic concern for the well-being of others and for humanity at large. To practice resiliency – or, as @bhammond2011 put it, putting on one’s own oxygen mask first – is particularly important, however counter-intuitive it is to the altruistic instinct to put others first and oneself last. To quote a Regimental Sergeant Major I once knew who was as grizzled as he was wise: “I don’t know what use you’ll ever be to anyone, but I sure do know you ain’t no use to anyone dead.

Kelly, L., Medina, C., & Cameron, D. (2014). Rebels at Work: A Handbook for Leading Change from Within. O’Reilly, \$19.04 (Kindle). The authors also have a great website definitely worth checking out.

Reader questions: How did you find Rebels at Work? Do you feel it applies to your position in life and work? I’m particularly interested in epidemiologists, public health workers and researchers who found they got a lot out of the book. Don’t be shy, leave a comment!

References   [ + ]

# Peace on Christmas

The ‘war on Christmas’ is a venerable tradition in America. Many blame the incipient atheism and secularism of American society starting with the 20th century, but in fact, 17th century Puritans – whom you can accuse of many things but definitely not of religious pluralism and secularist tendencies! – were all too keen to ban celebrations of Christmas in the New World.1 And to this day, the ‘war on Christmas’ remains one of those political signal flags, waved with more pride than wisdom, more enthusiasm than meaning.

But I don’t want to talk about the war on Christmas. I want to talk about the peace on Christmas.

### Christmas miracles

Like most people who, by addiction or duty, are near constantly connected to the internet, I couldn’t possibly miss astrophysicist popular science narrator Neil deGrasse Tyson’s obligatory tweet to enlighten the masses about the sheer folly and insignificance of Christmas.

Now, if Mr Tyson does not want to find a religious miracle in what transpired two millennia ago somewhere near Bethlehem, that’s his right, and a right I volunteered to bleed and die for. But maybe he’ll have time for a secular miracle.

### December, 1914

By Christmas 1914, the Great War has been raging on for less than half a year, but quite definitely longer than what was promised – a quick pacification of the Balkans and resolution of the Austro-Hungarian crisis before the leaves fell. After the initial frantic changes of control that form the first spasms of every armed conflict, the lines of combat solidified, and warfighting went from killing time to, well, just killing time. Nowhere was this more true than the blood-sodden fields of Ypres, where the First Battle of Flanders between late October and late November ended in the kind of frustrating, indecisive result that we now know is psychologically more distressing than combat itself.2 The troops on the Western Front were tired, bored and immensely fed up with a war during which nothing happened.

Until something happened that no-one would have thought. Something we might with no exaggeration call a miracle.

After five months of war and the attendant emotions – rage, grief, loss, nationalistic fervour and divine self-justification -, the diary for the 16th Queen’s Westminster Infantry Regiment for 25 December 1914 noted only curtly: “no war today”.3 A Rifleman Graham Williams of the 5th London Rifle Brigade, cited by Neil Hollander,4 described the situation thus:

Then suddenly lights began to appear along the German parapet, which were evidently make-shift Christmas trees, adorned with lighted candles, which burnt steadily in the frosty air!
First the Germans would sing one of their carols and then we would sing one of ours, until when we started up O Come, All Ye Faithful, the Germans immediately joined in singing the same hymn to the Latin words Adeste Fideles. And I thought, well, this is a most extraordinary thing — two nations singing the same carol in the middle of a war.
I think I have seen one of the most extraordinary sights today that anyone has ever seen. […]

In his letter to his mother, the naturalist and author Henry Williamson, then also with the London Rifle Brigade, wrote an extensive narrative of the Christmas Truce, too long to repeat here but worth excerpting a few parts:

On Xmas eve both armies sang carols and cheered & there was very little firing. The Germans (in some places 80 yds away) called to our men to come and fetch a cigar & our men told them to come to us. This went on for some time, neither fully trusting the other, until, after much promising to ‘play the game’ a bold Tommy crept out & stood between the trenches, & immediately a Saxon came to meet him. They shook hands & laughed & then 16 Germans came out.

Thus the ice was broken. Our men are speaking to them now.

They are landsturmers or landwehr,5 I think, & Saxons & Bavarians (no Prussians).6 Many are gentle looking men in goatee beards & spectacles, and some are very big and arrogant looking. I have some cigarettes which I shall keep, & a cigar I have smoked.

We had a burial service in the afternoon, over the dead Germans who perished in the ‘last attack that was repulsed’ against us. The Germans put ‘For Fatherland & Freedom’ on the cross.

Other accounts recount spontaneous games of football (remarkably, between the 2nd Battalion Royal Welsh Fusiliers and the Saxon Infantry Corps)7, exchanges of gifts, joint services and a fervent yet futile attempt by senior leadership on both sides to prevent the truce. But miracles don’t obey orders.

Of course, eventually, war resumed, and after the increasingly inhumane and embittered warfare of 1915, involving in particular widespread use of lethal war gases like chlorine – in an act of sad irony, deployed near Ypres, where one of the first Christmas truces took place – and wide scale deployment of non-lethal lachrymants like xylyl bromide (T-Stoff), whatever residual sympathies could have led to a similar truce have been extinguished. For the rest of the war, Christmas Eve was celebrated by artillery barrages from both sides, so as to preclude any foolhardy attempts by the men in the trenches to find that unity between humankind that war cruelly severed, severs and will sever as long as we have them.

But once, just one brief Christmas Day, “at some disputed barricade”, there was a brief moment in which men who grew up, or at the very least were inculcated, with the superiority of their own nation and the justice of their cause, could set all that aside and realize that what they shared was much more than what divided them.

And that, to me, is as close to a Christmas miracle as it gets.

For reasons complex and convoluted, we don’t know to how many of the men reaching hands across the barbed wire and the barricades were devout Christians, or what the nativity of Christ meant to them, whether they ever celebrated Christmas, or whether they lit the last candle of the Menorah mere three weeks earlier. We do know that those who were Christians came from a range of different branches, some with radically different interpretations of Christmas. We don’t know to how many of them worshipped the nativity of Christ and how many were largely inspired by the secular aspects of Victorian Christmas: carols, Christmas trees and presents.

But what we do know is that on that 25th December 1914, something happened that no-one would have predicted, that someone at one point risked their lives to reach out their hand to their sworn enemy for a single day’s relief from the stalemate, that for one day amidst a senseless bloodshed, Love, Mercy and a notion of a shared humanity prevailed over principalities, powers, rulers of darkness of that world and spiritual and moral wickedness in high places that sought to separate brother from brother.

And if that’s not a miracle, I don’t know what is. You don’t have to believe in any supernatural power to accept it. It’s enough to consider all it takes to overcome the hatred and the chauvinism and the supremacist ideologies and the blind, unquestioning loyalty and the all-ever-blinding propaganda to conclude that whatever happened on that day 103 years ago, it was something very special.

And that’s why it will forever be taboo to speak of the unifying power of this day, between believers and unbelievers, between those who worship Christ and those who worship any other deity or none, between those who were made brothers and sisters equally endowed with a shared humanity but separated by arbitrary divisions.

And that’s why, as long as we wish to heal this broken world, we must think and speak more of the peace on Christmas than whatever war on Christmas, real or imagined.

Personal note: Joyeux Noël, despite the odd historical inaccuracies and somewhat contrived plot, is a beautiful dramatization of this incredible event, and definitely worth watching over Christmastide. Merry Christmas!

References   [ + ]

 1 ↑ L.C. Scott writes in Christmas – Philosophy for everyone: better than a lump of coal (Wiley, 2002): “Ironically, the earliest Christian settlers on both the [American] mainland and the islands of Hawaii forbade the celebration of Christmas as extra-biblical. […] On the mainland, seventeenth-century Puritan New England had laws forbidding the observance of Christmas. […] Those who still celebrated Christmas, such as Lutherans, Catholics, Dutch Reformed and Anglicans, did so in a ow-key manner, focusing on church or home. Well into the 1800s the celebration of Christmas was a local matter. The first state to make Christmas a legal holiday was Alabama in 1836.” 2 ↑ For an argument expounding on this, see the works of Jonathan Shay, who among the moral decay of the war also emphasised the deleterious consequence of ‘killing time, punctuated by killing time’, and the relation of the abrupt changes from one to another to the development of hyperarousal as a pathognomonic symptom of combat trauma. 3 ↑ Cited in Blom Crocker, T. (2015). The Christmas Truce: Myth, Memory and the First World War. University of Kentucky Press. 4 ↑ Hollander, N. (2013). Elusive Dove: The search for peace during World War I. McFarland. 5 ↑ Roughly equivalent to a militia in this context, Landsturm and Landwehr were last-ditch forces conscripted of everyone of military age, hastily trained, badly armed and, effectively, cannon fodder. 6 ↑ The importance of this may be that Prussians practiced a much harsher military discipline than central and southern forces. 7 ↑ A good summary of the event is in DeGroot, G. (2014). The truth about the Christmas Day football match. The Telegraph, 24 Dec 2014.

# A walk in the light haze of Pannonhalma.

A walk in the light haze of Pannonhalma. The Archabbey is beautifully maintained and wonderfully well-kept, as are the grounds. As one of the iconic Benedictine abbeys of Hungary and part of the UNESCO world heritage, it is definitely worth a visit.

Taken on Dec 26, 2017 @ 14:14 near Pannonhalma Archabbey, this photo was originally posted on my Instagram. You can see the original on Instagram by clicking here..

# Quantifying herd immunity lower bounds

For the flu, with an R0 of about 1.5, we would need at least a third of the population vaccinated for herd immunity to be effective, assuming a 100% effective vaccine – knowing that flu vaccines’ VE is less than that, we’re looking at closer to 60% for adequate herd immunity. That means you, too. It is vitally important that everybody does their part, even if they themselves don’t expect, or care about, getting the flu.

Since then, I have been approached by a few people, both here and on Facebook, about the maths underlying it. So since I’m officially spending a mandatorily (read: spousally) enforced weekend off work, I thought I’m going to lay out the reasoning behind the maths.

## What is herd immunity?

The idea of herd immunity is that an infectious disease needs a given number of available hosts in order to be ‘sustainable’ (able to continue to infect people) within that population. Typically, for illnesses from which people tend to either die or recover as non-infectious cases, this has to do with something called $R_0$ (pron. arr-nought) or ‘reproduction number’ of the infectious disease in a population.1

$R_0$ describes, roughly, the number of cases produced by each case. Consider poliomyelitis, which has an $R_0$ of about 6 (unusually high, given its transmission route).2 That means that every case produces, on average, six new cases. It is obvious from this that unless the $R_0$ for an infectious disease is above 1, the infection will not be sustainable in the long run – it will burn through the infected and eventually die out. $R_0$ is determined empirically, and is specific to a naive population, i.e. one where there is no pre-existing immunity to the disease nor is there any significant infection. It is often enough derived from the average contact rate of the population (the number of times the transmission-relevant contact occurs between people, e.g. the number of sexual contacts per unit time for sexually transmitted infections or the number of sufficient vicinity contacts for droplet/airborne transmitted infections) and the inverse of the infectious period, i.e. the multiple of unit time for which a case remains infectious.

The idea of herd immunity relates to $R_0$ in a particular way. Consider, once again, polio with its $R_0$ of 6. Now assume that half of the population is vaccinated, and assume for the time being that the vaccine is 100% effective. In practice, that means that 6 successful transmissions will at best yield 3 new cases (the unvaccinated half), whereas there will be 3 guaranteed resisters (the vaccinated half). In effect, vaccinating n% of the population cuts n% off the theoretical $R_0$ in a naive population – or, in other words, for a population with $\frac{1}{n}$ vaccinated, the adjusted effective $R_0$ is

$R_{0_{post-vaccination}} = R_{0} (1 - \frac{1}{n})$

Recall that we have earlier related $R_0$, and specific values of it, to the survival of an infectious disease – namely that if $R_0 < 1$, the disease will eventually die out. The point of herd immunity is to artificially whittle down $R_0$ to a sub-1 value. If vaccinating $\frac{1}{n }$ of the population reduces effective $R_0$ to $R_0 (1 - \frac{1}{n})$, then to reduce $R_0$ to 1 requires us to vaccinate $1 - \frac{1}{R_0}$. Thus for polio, with $R_0 = 6$, we need to vaccinate

$1 - \frac{1}{R_0} = 1 - \frac{1}{6} = \frac{5}{6}$

of the population to reach a point where, assuming the vaccine is 100% effective (which it never is – not many things in reality are 100% effective), the disease cannot subsist and spread in the population for long. At that level of vaccination, even unvaccinated people are significantly protected, almost as well as if they were to be vaccinated. In theory, anyway.

### Herd immunity in practice

In practice, there are two problems with this. One is that herd immunity doesn’t help you if you, for whatever reason, do things that lead to catching the disease. In other words, it is not a ‘real’ immunity the way getting vaccinated is. It ensures that the likelihood of catching the disease is significantly reduced, and that outbreaks become self-contained, but it doesn’t give you as an unvaccinated individual any immunity per se. The other problem is that herd immunity calculations are premised on 100% vaccine efficacy (which is not the same as efficiency, see the previous post for difference!). The point is that the result of the above calculation is a theoretical minimum, premised on 100% effective vaccines, for herd immunity – reaching it, or even exceeding it, does not yet guarantee herd immunity. And with information about vaccine efficacy not being easy to come by (unlike information about vaccine efficiency, which is available in abundance), it’s hard to determine a correct rate. For these reasons, anyone who could get vaccinated, should get vaccinated.3 Especially for viral diseases, herd immunity is the best protection for those who genuinely cannot get vaccinated. It’s a goal worth striving for as a population – and it costs nothing to confer herd immunity above and beyond getting immunised, which already confers the benefits of individual immunity.

References   [ + ]

 1 ↑ The situation is different for illnesses where a recovered case may remain infectious, indefinitely or for a given time, e.g. for Ebola virus disease (EVD), where recovered patients continue to have actively infectious virus in their seminal fluid and vitreous humour for several years. For a case study, consider William A Fischer II et al. Ebola Virus RNA Detection in Semen More than Two Years After Resolution of Acute Ebola Virus Infection. Open Forum Infectious Diseases, 2017. DOI: 10.1093/ofid/ofx155/4004818 2 ↑ In general, airborne infectious diseases tend to have a higher $R_0$$R_0$ than other methods of transmission, such as those that require sexual contact, blood or, as in the case of polio, fecal-oral transmission to spread. 3 ↑ A recent meme is claiming or pretending to have the MTHFR mutation and arguing that this should lead to a medical exemption from vaccinations. Most doctors haven’t heard much of MTHFR, and it sounds scary, and when you google it, most of the documentation is on the extremely rare complete MTHFR deficiency, a very rare and very serious illness that has about 70 documented cases in all of medical history. Meanwhile, some degree of MTHFR mutation is present in a good deal – somewhere between 10 to 35% – of the normal population, and is indeed so frequent without any associated clinical syndrome that it’s seen as a harmless variation in genetics. MTHFR (methylenetetrahydrofolate reductase) is an enzyme that catalyses the reduction of 5,10-methylenetetrahydrofolate to 5-methyltetrahydrofolate, which is involved in the methylation of homocysteine, yielding methionine. There is some evidence, from an NIH study with ridiculously small sample sizes, that certain MTHFR SNPs, particularly rs1801133, are associated with adverse events in smallpox vaccination. There are two problems with this. One, I don’t know of this ever having been replicated with any sample size worthy of being drawn conclusions from. Two, given the frequency of MTHFR deficiency in the population, you would expect vast numbers of ‘vaccine injured’ people, much more than the cases in VAERS and definitely more than those that have a credible claim. It makes no epidemiological sense at all. MTHFR polymorphisms are, as the science stands at the moment, not a good reason not to vaccinate.

# Is the flu vaccine really only 10% effective? A sojourn into immunization epidemiology

If you work in IT, you must be familiar with the instances of well-meaning family asking you to fix their computers – even if you develop enterprise Java apps and they have a broken video card, they expect you to be able to do something about it. For epidemiologists, the equivalent is the flu shot. Over the last few weeks, I have been asked by so many of my friends to explain why they should even consider getting the flu shot if it’s, reportedly, only 10% effective. Add to that, of course, the sheer amount of crazy on the internet on the subject (the flu shot will give you cancer/autism/cancertism, here, have these herbs, open your chakras, meditate on these crystals and drink some colloidal silver until you look like Stan Jones).

“I mean, how hard could it be? We have the flu every year,” my friend, a very intelligent and accomplished lady, pointed out to me the other day. “And surely something like the flu is pretty simple, right? You’d think that by now we would have figured out what works and what doesn’t.”

In fact, it’s pretty complicated – and the simplicity of the flu virus makes matters worse, not better.