The long twilight of long covid

Medicine is alarmingly unscientific sometimes. For a whole host of reasons, including privacy, politics, and arrogance, there is no systematic tracking of side effects of drugs, or reactions to different infections, or how effective various surgeries are as interventions for particular conditions, or anything at all, really. And nowhere has this been more apparent than in our collective response to long covid.

What is long covid? We have no idea, except that it could be a collection of any of over 50 different symptoms – quite possibly many, many more.

How long will it last? We have no idea, except that we define it officially, as still experiencing symptoms from 12 weeks post infection.

How many people have it? We have no idea, except that some estimates suggest as many as 30% of people with covid will experience long covid to some degree. It could be higher.

The numbers, at least, we could be tracking. In Australia, confirmed covid cases are largely recorded – originally, we had a record of who had tested positive on a pcr test, and now we are supposed to register a positive rat. Sure, lots of people who get positive rats probably don’t register them, and lots of people who have covid probably don’t bother to test.

Still, we have an unprecedentedly large cohort of people we know have had covid. Probably. (Rats and even PCRs can have false positives from time to time.) We could be following up with all of those people, or some representative sample of those people, or really anyone at all to find out how they are tracking with symptoms. But, although there is research into long covid, there doesn’t appear to be any systematic tracking & followup of people who have had covid. So we don’t know much at all.

The thing is, this is still a huge step forward over how much we know about existing post viral syndromes, which have been wreaking havoc among a small section of the population for decades – probably a lot more. Until long covid hit the global consciousness, Post Viral Fatigue, or Chronic Fatigue Syndrome, or Myalgic Encephalitis, or whatever you want to call it, was largely considered a myth. An excuse. Extreme hypochondria. Nothing real. Nothing worth taking seriously.

I had post viral syndrome in my early twenties, and I was gaslit by many in the medical profession, who seemed to think I was just trying to do too much, or a little anxious, and I should really accept the energy levels I had available to me. I spent years struggling with exhaustion, brain fog, aphasia (inability to find the right word), and frequent recurrent infections. I was horribly unwell, my lifestyle wildly compromised, largely unable to work, and told this was just my life now, and nothing to really worry about. I eventually found a supportive immunologist, but there was little he could do aside from acknowledge that I was genuinely unwell. That, in itself, was enormously reassuring, because even my parents, with their medical backgrounds, did not believe I was actually ill.

Eventually I clawed my way back to health. I learned a lot along the way, including the very tough lesson that trying even harder to get well could make me worse. I had to learn to rest, push myself a little, rest some more. Too much pushing could send me backwards, but so could too much rest. Those few times I summoned the strength to get out and socialise, I could appear almost normal while I was out, but it was painfully easy to overdo things, and I’d wind up paying the price for days, if not weeks.

There’s an art of knowing when, never try to guess.

Toast until it smokes and then

twenty seconds less.

Piet Hein, Grooks II

But there was no guidebook. No rules. No clear, evidence based approach to getting better. I was determined, but I was also lucky. Some people never got better. I don’t think I ever got all of my energy back, but I did pretty well. I got fit. I had kids. I had a busy working life.

Enter the pandemic, and the one thing that we do know about long covid, which is that people who have had anything like it before are very likely to have it again, probably worse.

In May, after over two years of extreme caution, I got covid. Last Friday my post covid fatigue officially became long covid (because it’s been more than 12 weeks and I still have symptoms). I have a little aphasia, but not as much as last time. I get brain fog, but this one is different – it feels more like a weird compression headache. I know when my head feels that way I need to stop and rest immediately. It probably means I needed to stop and rest an hour or so earlier, but who knows? I get hot flushes, random pain, dizziness, constant exhaustion, breathlessness. I don’t want this to be my life.

Sometimes I get out and do things. Others I lie on the couch and struggle to summon the energy even to heat up a bowl of soup for lunch. I’m working, but less than usual. My social life is carefully doled out, like strictly rationed treats, and sometimes it’s still too much, but without social contact I won’t cope at all. Meanwhile I’m also trying to repair a hip injury, which requires a consistent approach to exercise that I am simply not capable of right now.

This all sounds dreadful, but I’m a lot better than I was, and I think I’m probably on the road to full recovery. I am better, this time, at not overdoing things (it would be hard to be worse!) and more likely to rest when I need to. That will help. I’ve just had my fourth booster. That will help, too. But it will almost certainly be a rollercoaster, with plenty of frustrating ups and downs. Everyone’s experience of long covid is different. Some people might never get better. Some will wind up with auto-immune diseases like Multiple Sclerosis or Parkinson’s. Covid leaves a footprint, and there’s no knowing who it will crush, and who will barely feel it.

Last time I had post viral syndrome I lamented the fact that I couldn’t use my body as a science lab – tracking everything, monitoring the smallest variations, trying to find correlations between minute changes in, say, nutrient levels, or hormones, and how I felt. I really wanted to understand what was going on with my body, and try to optimise my recovery.

This time, with so many people falling ill, maybe we can finally apply some science to this thing. We are sometimes very arrogant about our understanding of the body and what we can do, but the sad fact is we remain wildly ignorant. Sure, we can chop out mis-aligned hip joints, reposition them, and bolt them back into place facing the right way, but we can’t do anything like that to the immune system. Perhaps it’s time for a little humility, and a lot of science. And trying really hard not to get (or spread!) covid.

* For more on medicine’s lack of scientific rigour, check out Chapter 2 of Raising Heretics: Teaching Kids to Change the World.

Bright Sparks Day

Victoria has a public holiday today, in honour of the Australian Football League Grand Final tomorrow. We also have a public holiday on the first Tuesday of November, in honour of the Melbourne Cup horse race (which at least runs on the public holiday). I am utterly appreciative of a day off, don’t get me wrong. I believe we all work too hard, without much in the way of recognition, and the trend towards crazy working hours is bad for everyone.

But… seriously? A public holiday in honour of a football game? I guess it’s consistent with Australian history. After all the Prime Minister of the day, Bob Hawke, seriously suggested that Australians should be allowed to take the day off when “we” won the America’s cup (a boat race). But I can’t help noticing that no-one proposed a public holiday when Barry Marshall won a Nobel Prize for proving that ulcers were caused by bacteria – Helicobacter Pylori – rather than stress or diet.

We raise up football players as heroes. We laud movie stars and television personalities. We call the Melbourne cup the “race that stops a nation” and it’s not so far from the truth. We happened to be in Perth when the semi-final games were run involving the Fremantle Dockers and the West Coast Eagles (different games, I know, I know), and the frenzy was amazing. Banners hanging from buildings. Crowds everywhere dissecting every moment of each game. I don’t begrudge anyone their interest in football, even though I don’t share it. But I do begrudge the public holidays, and the official reinforcement that sport is our proudest achievement.

Sport. Seriously? That’s what we’re proud of? That’s what we want to focus on?

Australia produced wi-fi, thanks to the CSIRO.

Fiona Wood created spray on skin, a radical, life-changing treatment for severe burns.

Howard Florey and his team discovered medical uses for penicillin, and ways to produce it in large quantities.

Graeme Clarke and his team developed the cochlear implant, giving hearing to people who would otherwise have spent their whole lives profoundly deaf.

All Australian achievements. And there are plenty more.

No Australian PM would dare to be anti-sport. That would be a real vote killer. But being anti-science is quite socially acceptable. So our politicians pander to sports fans by giving public holidays and being seen to be sports-mad. But they kill funding for science (which struggles on and changes the world even so!). They raise sportsmen (always men) to godlike status. And they feel quite free to ignore scientific evidence when they make their policy decisions.

Science changes our lives every day. It saves our lives. It improves our lives. It changes the world. If we’re very lucky it might save us from the worst of climate change, if we actually listen to it.

Sport entertains us.

What does our adulation of sportsmen teach our children? That if you’re good enough at wielding a bat, a racquet, or a ball, if you can run fast, or swim a world record, all sins are forgiven and any kind of bad behaviour is acceptable. That sport washes away all sins.

So I’d like to propose Bright Sparks day, in honour of all the remarkable and bright Australians who are changing the world. The engineers who invent things. The scientists who discover things. The people who make our very lives possible.

A day to reflect. A day to create. A day to recognise the contribution of science and engineering to everything we do. A day to celebrate real achievement.

Imagine teaching our children that scientists and engineers are heroes who change the world. Now that would be something to celebrate.

Hall of Fame

I have a friend who works in Malawi with Doctors without Borders, providing them with lab support so they can save lives. She’s a hero. You won’t know her name.

I have a friend who, with his team, was instrumental in developing a new cancer treatment that has the potential to save countless lives. Even when the treatment becomes public, you won’t know his name. He also invests a lot of time and energy into educating people about science and climate change. He’s a hero, too.

I have a friend who works in biotechnology, creating new and sometimes radical sustainable solutions to old problems. That sounds heroic to me, but you’ve never heard of him.

I have another friend who is about to travel to Zambia to work on a project aimed at saving the lives of countless mothers who die of diseases that are laughably preventable in the west. She’s a hero. You don’t know her name.

I have a lot of friends who invest their hearts, souls, and every spare moment into the education and welfare of the young people they teach. They are heroes, but unless they’ve taught you, you’ll never know their names.

Yet you probably all know the names of dozens of people who are famous for pretending to be someone else, for making lots of money, for being able to kick and catch a ball, for looking good in a dress, or for simply being famous. You may even know the names of their children, who they’re dating, and the shoes they wore on this week’s random red carpet.

I suspect none of the people I listed above want to be famous. In fact most of them would be appalled at the thought. But a quick look at your average newspaper shows numerous profiles of people who are famous for their fame, and maybe one of someone who has done something to make the world a better place. On a good day. Many days there are none. And don’t get me started on magazines. Just don’t.

So what are we teaching our children? As they watch us, wide eyed, and take in everything we do as a model for their own behaviour. Learning what to care about, and what their priorities should be. While we gossip about who celebrities are sleeping with, and how dreadful they looked in that dress, we despair about our children growing up shallow, caring about appearance over substance, and not being interested in science.

How would a magazine sell if it profiled only people like those friends I mentioned above? People who make a difference to the world. People who invest themselves in changing the world. People who care about what they do, and do things that matter. Would it sell? Would anyone care?

At the Oscars, the #askhermore campaign encouraged journalists to care about more than what an actress was wearing. But what about caring about more than fame for its own sake? What about teaching our children that the pinnacle of human achievement is not being famous? That they can Be More? That’s what I want my children to learn. Go ahead. Show them they can #BeMore.

Danger, Will Robinson!

Much of the Australian Government’s current behaviour seems to be predicated on danger. Apparently, aside from the “only visible out of the corner of your eye” budget emergency, we also have a security emergency, a border protection emergency, and a desperate need to sacrifice privacy and freedom in order to be safe from the ever increasing terrorism emergency. Indeed, one news article I read today suggested we Australians live in “increasingly dangerous times”.

Certainly we feel increasingly unsafe. The news is full of reasons why we should be terrified of, well, just about everything. Of strangers (especially around our children). Of hijabs and head scarves. Of hoodies. Of refugees. Of politicians (actually that one seems pretty logical).

We are told that we need to sacrifice the presumption of innocence, together with our privacy, and accept laws creating a new level of surveillance (maybe, depending on who’s talking today), and requiring people traveling to “suspect” places to prove that they were not there with nefarious intent. We have to accept this, or be on the side of the terrorists. Obviously. Because we are in so much danger.

And yet… Are we actually at risk? Are we more likely to die? The Bureau of Statistics says that in 2003 132,292 people died in Australia, whereas in 2012 the number was 147,098. So we are more at risk, no? Well… no. If you factor in population in those years, in 2003 the ratio was 0.0067. In 2012, it was 0.0064. So you were actually less likely to die in Australia in 2012 than you were in 2003. The overall death rate has dropped.

If you consider the facts (a proposition neither politicians nor the media are keen on, it seems), we are growing older, safer, and more prosperous all the time. We are increasingly blind to how good we’ve got it. We have an unprecedented degree of financial security. We can afford to extend our good fortune to refugees. We can afford to protect our privacy, our freedom, and the presumption of innocence. We can also afford universal healthcare and high quality education, whatever Tony’s cronies might say.

What we can’t afford to do is reject science, facts, and the reality we live in, in exchange for a politically constructed illusion that is convenient for people trying to gain power, but catastrophic for the rest of us.

There is increasing danger in these times, but it is neither terrorism nor economics. The real danger is ignorance and credulity. It lies in blind acceptance of political spin, and a failure to question the statements and the emotive slogans that are stuffed down our throats every day.

Whatever your political views, whatever your beliefs, the one thing we must all do is to keep asking questions. It may be too late to keep the bastards honest, but it’s not too late to call them on their lies.

Real learning

Ever year I walk away from my last class with my year 11 Information Technology class thinking “well, I can’t possibly top that!”

Every year my new class amazes, educates and inspires me.

This year we had an incredible opportunity to work with Polperro Dolphin Swims to analyse the vast amounts of data they have accumulated over their years working with the dolphins and seals in Port Phillip Bay. This data consists of a page of handwritten notes for every trip the Polperro has been out on for the last 8 years. Notes about weather conditions, dolphin numbers, locations and behaviours. That’s a lot of pages, and a lot of notes. The opportunity to work with this data was thrilling for several reasons.

Firstly the students were able to meet and work with the crew of Polperro, headed by the incomparable Judy Muir. Judy is a fiercely passionate conservationist who works tirelessly for the protection and well-being of the bay and the animals who make it their home. Judy and Marine Biologist Jess Beckham came to talk with my class early in the year about the data and the reasons it is important to record and understand it, and my students were so inspired that some of them started working on their projects months before I even set the assignment.

Secondly the students were able to work with a wealth of data that has never been analysed. Some of them wrote programs to capture and process the data in real time, to make the data more accurate and avoid having to laboriously digitise handwritten data in the future. Some wrote programs to create maps of where the dolphins have been seen and how often. Some wrote programs to graph different elements of the data against each other to look for relationships – for example temperature of the water and how it affects dolphin activity levels.

Essentially what we did was describe the situation and some of the conservation issues to the students, give them access to the data, and then get out of their way. They framed their own questions, then designed their own projects from the ground up to explore their questions and search for answers.

This is genuine scientific research – starting with data and finding patterns and relationships within it. How many kids get to do that in year 11?  The work has real world implications for the creation of sanctuaries where dolphins are most likely to congregate, for rules about the operation of jet-skis (which are frequently fatal to dolphins and need to be kept out of their habitat as an absolute priority), and for a host of other conservation uses. At least 4 of the students are so motivated that they are planning to continue working on their programs, even now that the subject is officially finished.

Like any research there were setbacks, drawbacks, positive results and negative ones, and through it all my students continued to amaze me with their enthusiasm, their motivation and their incredible talent. Each and every one of them ended the year miles ahead of where they began, and I am overwhelmingly proud of them.

Today we went out on Polperro. With exceptional generosity Judy and her crew gifted the class a dolphin and seal watching cruise in appreciation of all the work we have done. It was a fantastic way to end the year together, and the dolphins showed their own appreciation by toying with us – appearing a bit beyond the boat, then disappearing beneath the waves, then popping up right on our bow wave, so close we could almost touch them. It fascinated me that these magnificent creatures were obviously choosing to hang out with us – they are so sleek and fast they could have slipped beneath the waves and eluded us at any time, but they kept popping up to play with us a little more. It was an amazing privilege.

The value to my students of contact with people like the Polperro crew is beyond price. Troy, Ben and Judy ran our tour today. They shared their expertise and their enthusiasm with us, and they made the whole project even more real for the students. They were fabulously enthusiastic and appreciative of everything the kids have achieved. Judy told the class today that they give her hope for the future – that their actions can change the world (and already have). She is so right. These kids hold the future in their hands, and they are not afraid to give it everything they’ve got.

I am incredibly lucky to be a part of it.

 

 

Don’t fail me now

Picture the scene: a 5 year old girl loses a game with her family. She flings herself, sobbing, to the floor wailing “I never win!”

Her family responds with mild sympathy, before explaining that you can’t win every time. That it’s only fair for everyone to get a turn, and that the important thing is to have fun playing the game. It doesn’t matter who wins.

A 9 year old performs a variation on the same scene. She gets rather less sympathy, and a terse description of how life works. After all, she is 9. She should know better.

An adult does it, and you quietly decide never to play with her again. It’s no fun.

When a whole country does it, what can you do?

The Australian media has been screaming since roughly day one of the Olympic games about how we have failed. We have received our “worst result in 20 years.” Shock! Horror! Betrayal! Who can we blame?

Armchair experts around the country bemoan Liesl’s weight and James’s nerves. They whine about the obvious inadequacy of the coaches. About not receiving the medals we thought we had bought. Woe is us, alas, alack.

I know I am danger of harping on about this, but Nobel Prize Winner Peter Doherty’s instruction to students that they should not be afraid to fail keeps coming back to me. It’s not only true in science, but in life. Anything you can achieve first time is not terribly difficult, and most likely not terribly interesting.  The only way to achieve success is to pick yourself up each time you get knocked down. To dust yourself off, learn from your mistakes and do better next time. And to do it over and over again.

You’ve been keeping to yourself these days
Cause you’re thinking everything’s gone wrong
Sometimes you just want to lay down and die
But that emotion can be so strong
But hold on ’till that old second wind comes along

This is resilience. Many of the world’s most momentous scientific discoveries were accidents. (The most well known is penicillin.) If you know how every experiment is going to turn out, then you’re not going to discover anything new. Scientists not only expect the unexpected, they seek it, and must be open to it in order to make discoveries. That’s not failure. That’s progress. Learning what doesn’t work is as important as knowing what does – even if it’s not as newsworthy.

You better believe there will be times in your life
When you’ll be feeling like a stumbling fool
So take it from me you’ll learn more from your accidents
Than anything that you could ever learn at school

Second Wind (You’re Only Human) – Billy Joel

One of the most important life skills we can teach our kids is how to be resilient. How to learn more, become stronger, and reach higher after every mistake. How to bounce back, get back on that horse, and keep going in the face of adversity.  Yet what are we teaching our kids with our response to the Olympics?

That only gold counts. If you’re not a winner, you’re a loser – end of story. The papers are screaming about how our athletes have failed us. How each medal cost us over 10 million dollars. They want to cut spending to sport – and don’t get me wrong. I am not against a rational redistribution of funds. I’d love to see Australians as excited about science as they are about football, and funding it with equal enthusiasm.

But this is not a rational conversation about finance. This is a tantrum we are throwing because the medals we counted failed to hatch. Never mind personal bests, amazing achievements that came in fourth, and the work that went into actually making it to the olympics at all. None of that counts if you don’t bring home a gold medal. Never mind sportsmanship. Forget what you actually achieved. We don’t want to know you unless you won a medal.

Sorry kids. Do as we say, not as we do.