Nerd Sunday: A tale of two sicklies

This is the story of a friendship, a furore, the limits of evidence and the necessity of hope.

I’ve got a soft spot for the cliché, ‘Follow your heart, but take your brain with you’. It’s OK to feel, and it’s OK to think. These things aren’t enemies, even if we’re trained to understand them that way. They can even work together. I believe in the power of evidence to help people and planet, but I’m only human – and on the days the facts seem too cold and hard, it’s my heart that carries me through.

I’ll level with you: I didn’t take the news well.

It had been over two years since I first got sick and then never got better – although, in the months leading up to the second time, I’d definitely improved. Deep down I knew it would get me again, even though I take every precaution under the sun. And I knew that when it did, the prognosis wouldn’t be good. Three weeks ago, when the liquid from the plastic vial crept across the test and two lines appeared, I cried.

Jess is my friend, and she got in touch to check on me. She and I are the same weirdly niche demographic. We’re both middle-aged Pākehā women. We both have PhDs – her in health psychology, me in social policy. Both of us, it’s probably fair to say, think and care deeply about the world around us, in a way that tends towards anxiety. We’re both trained to weigh evidence, but we try not to do it all smarty-pants and superior, as if we think a smug handful of facts and figures on a page trumps everything it means to be complex and feeling and human. I can’t even remember when we met, except that as a pair of local lady-nerds in a fairly small country, it kind of felt inevitable.

Jess and I both have long COVID.  

As we messaged, she sent me a handful of links. It’s with these links that the furore began, or for some, a glimmer of hope. It all depends on how you look at it.

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Before we go any further, we need to set the scene – or the scene as I see it, at least.

I knew little about chronic fatigue conditions until I developed one. I knew they existed, but in a theoretical way: I barely understood their lived reality. After all, I hardly knew anyone who had such a condition, or so I thought. Since I got sick, I’ve had time to wonder why.

Here’s the short answer. You won’t find many groups in society more gaslit than people with chronic fatigue conditions. They are patronised or cajoled; told by turns to cheer up, be less lazy, stop imagining things or pull themselves together.

Aotearoa has played its own part in this history of gaslighting; including in a strange incident in 1984, during which the people of a west Otago town succumbed to a mysterious illness, with symptoms including respiratory issues, sleep disturbances, pain and chronic fatigue. The outbreak was dubbed ‘Tapanui flu’, a term you’ll still hear from time to time. Some explanations were ruled out – pollution in the water, or an infectious disease spread from animals – but the cause of the outbreak was never found, and is assumed to be an unidentified virus. Years after, the town’s doctor recalled the flippancy of the public, in poems and cartoons and songs, about a thing that caused his community so much distress.¹

One of the links Jess sent me is an article by the UK writer George Monbiot.² Monbiot chronicles the British history of chronic fatigue conditions and gaslighting in some detail – more detail than any Aotearoa history I can find. This aspect of his article is worth covering, both because it’s interesting, and because it seems unlikely these ideas from Britain didn’t wash up on our shores.

In Monbiot’s telling, what he calls a ‘biopsychosocial model’ – crudely put, the idea that chronic fatigue conditions are in people’s heads – began in 1970, with the publication of a paper by Colin P. McEvedy and A. W. Beard. The paper revisited a 1955 event called the Royal Free Hospital epidemic in London. The epidemic was a little like our own Tapanui flu, resulting in chronic fatigue and other symptoms, except that it affected 300 people, causing the hospital to be shut down for more than two months. At the time, with explanations like polio and glandular fever discounted, it was thought to be caused by some kind of viral infection of the central nervous system. The 1970 paper revised that theory, offering an extraordinary alternative theory instead: that the epidemic was caused by hysteria. More extraordinary was one of the arguments for the theory. The authors observed the epidemic affected more women – traditionally thought of as hysterical – than men.

And, according to Monbiot, that 1970s paper had a dark influence on policy. In the 1990s, British officials working on benefits policy heard from a psychiatrist who argued that myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is ‘not a neurological disorder’, but likely arises from a ‘misdiagnosed psychiatric disorder or poor illness management’. In the psychiatrist’s view, allowing benefits for people with ME/CFS might make them worse. Elements of the medical profession took punitive approaches too, so that some people with ME/CFS were forced into treatment regimes, or even locked in psychiatric units to make them comply. Some parents of children with ME/CFS were reported to social services for encouraging their kids to believe they were ill.

Monbiot draws a direct link from this history to emerging theories about chronic fatigue conditions.  It’s here that he radically parts company with Jess and I. Soon we’ll come back to the reasons why. For now, in the face of all this gaslighting, I want to acknowledge something important.

In the history of chronic fatigue, of the gaslighting around it, people like me are newcomers. Our relative privilege has not yet translated into a cure, but at least there’s some sympathy, an emerging vocabulary, for what we’re going through. It would be easy to talk about chronic fatigue as a recent discovery, like it now suddenly matters because I’ve got it; as if the crappy party started because I arrived. That, too, would be a form of gaslighting – so I choose my words as carefully, as respectfully, as I can.

There are people out there who’ve been going through this since before I was born. If that sounds sobering, it’s meant to.

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The next of the links Jess sent me is an academic article by researchers from something called the Oslo Chronic Fatigue Consortium – a group of academics, researchers, clinicians, and people with chronic fatigue. The article is called Chronic fatigue syndromes: real illnesses that people can recover from.³ It, too, fascinated me.

The Consortium questions the narrative that chronic fatigue conditions, including long COVID, cannot be cured. To be clear, they’re not saying these conditions aren’t real: quite the opposite. But they’re proposing a nuanced explanation – and one that offers hope. I’ll do my best to step you through.

For a start, the Consortium thinks ‘diagnostic labels’ around fatigue aren’t super useful. A diagnosis helps you when it points the way to a treatment. But conditions like ME/CFS have the same symptoms as lots of other conditions. Turn up to your doctor with those symptoms, and they won’t say, ‘You’ve definitely got such-and-such, and I’ve got just the thing for it’. Instead, you might come away with the downsides of a label – feeling bad – but no pathway to get better.

And why exactly does that matter?

The Consortium reports how forty years of research into ME/CFS have landed us in a kind of inconclusive place: at least for now, a straightforward organic explanation hasn’t been found. There isn’t a ‘specific biological defect or pathology’ (excuse the horrible language) that explains chronic fatigue conditions. Some ‘abnormalities’ have been found, but people with other conditions – chronic pain, fibromyalgia and ‘psychological’ illnesses – have these abnormalities too. It looks like something tricky could be going on: something that involves people’s bodies, their brains, and their relationships with the world around them.

Is this the same as saying that people with chronic fatigue conditions are imagining it, or even to blame? In my view, no. The Consortium thinks there’s a kind of interplay going on. We all know our brains send signals that drive our bodies. But brains are clever and complex. When they perceive a threat, your brain will use pain and fatigue signals to warn your body and make it shut down to keep itself safe. But, of course, your brain learns from experience. If it’s faced a bunch of threats in the past it can get a bit over-zealous, sending those pain and fatigue signals more than it should. And your body can even get in on the act, anticipating signals the brain hasn’t even sent, and kicking into pain and fatigue modes.

So far, so interesting, but there’s another part to the story.

We’ve seen how threats can activate brains to in turn activate bodies. The kicker is, the very way we talk about chronic fatigue conditions is, itself, a threat. Our societal narrative is that these conditions are incurable. We talk about them with stories that take away the hope that might just help people recover.

You can maybe see where all this is going. 

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It’s time to share more of Jess’s links, and to face the furore head on.

Let’s start with a recent article from The Conversation, titled Success in treating persistent pain now offers hope for those with Long COVID.⁴ Penned by two Otago University academics, Hamish Wilson and John Douglas Dunbar, it was published, unironically, with a picture of a sad-looking person wearing a facemask and sitting in the dark. The article begins by acknowledging how incapacitating the fatigue of long COVID can be, let alone the stigma. But this, critically, is the point where the hope kicks in.

Like the Oslo Chronic Fatigue Consortium, the authors take as their starting point that our brains affect our bodies, often in ways we can’t easily control; and that sometimes our brains get over-zealous. In chronic pain and fatigue situations, the neural pathways that let your brain be over-zealous are too developed, even though it’s not doing you any good. But the good news is that, even though it’s hard, unhelpful neural pathways can be undone and better ones created in their place. This is called ‘neuroplasticity’. The article talks about a study that helped people with long COVID address their subconscious beliefs about the illness – in short, helping them find hope. The study produced promising results. Wilson and Dunbar conceded there’s no ‘magic bullet’ here, but they think that neuroscience could be a tool in the long COVID recovery kete.

Did the authors know the strength of feeling their work would provoke?

In the next of Jess’s links, the Associated New Zealand ME Society (ANZMES) responded to The Conversation.⁵ In that response, they rebut the idea that ME/CFS and long COVID are caused by chronic pain (this is not quite the claim the authors made), and they argue it’s misleading to suggest ‘that treating hypersensitive nerves offers hope for these two conditions’. Instead, they make the case that ME/CFS is more complicated, and caused by a ‘broken energy system’. They reiterate that there is no cure for ME/CFS – and they argue, understandably, for greater policy recognition. And to be fair, ANZMES is only echoing views held by similar organisations overseas, where the debate between ME/CFS groups and researchers exploring neuroscientific treatments has become acrimonious, leading to professional attacks on researchers, and claims of misrepresented evidence.⁶

For what it’s worth, I wasn’t convinced by ANZMES’ take, but I wondered how their members felt, as human beings, when they read The Conversation’s article; whether the neuroscience argument seemed like the next chapter in a history of gaslighting, another insulting reprisal of ‘It’s all in your head’, that same old wolf dressed up in slightly newer sheep’s clothing. I might not have agreed; but I empathise, one human being to others, with every part of me.

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There’s a good chance you know my friend Jess too, but by her full name: Dr Jess Berentson-Shaw. As we messaged, I asked if she’d mind me sharing her views – and I asked her what points she’d most like to make. Jess’s passion, her professional life, is narratives. The Workshop, Jess’s venture, explains what ‘narratives’ means:

Research shows us that how people talk about issues can change how others think and act. Deepening people’s understanding of issues means learning how to use narratives and frames to shift mindsets. This shift is necessary for changes that make the biggest difference to people's lives and the planet's health.⁷

This explains why evidence alone doesn’t change people’s minds, especially if it’s all smarty-pants or superior. Evidence is only part of the solution to any puzzle. It’s what you do with it – telling stories that help people and societies do stuff differently – that really counts.

This isn’t to say evidence doesn’t matter: it’s essential. That’s maybe why I felt surprised, and kind of relieved, when Jess admitted it’s hard to engage with the evidence on long COVID, because it leaves her feeling despondent and powerless. I thought I was alone in this, and being a bit cowardly, putting my fingers in my ears and saying la-la-la. Jess’s ideas helped me flip that around.

Hope matters – and not just because it’s nice, but because it’s practical. A person told they have a shot at recovery all of sudden has agency, options, the potential for action. Maybe they have a new way to help them tackle the neuroscientific aspects of the illness: another tool in the kete. And at a bigger level, a society that believes long COVID can be treated invests in research. It makes better policy. It helps turns individual into collective action, creating a whole that’s greater than the sum of its parts.  

I liked where Jess was going with this, but I still had questions. There’s a balance here. Hope matters, but so too does honesty. I mean, what’s happening to me, to Jess, to everyone like us, is very real. This bit is hard for me to talk about.

Although I’m far less sick than many, and I’ve only been sick a couple of years – a blink of the eye in the world of chronic fatigue conditions – I’ve succumbed to the gaslighting. I’ve even inflicted it on myself. Mostly, when I talk about long COVID, it’s retelling a story from a good day, not a bad one. Admitting to the bad days, at least in the moment, has felt like a weakness, made me afraid it would be seen as a declaration of incompetence. I have struggled to ask for what I need: a short lie down, a break from noise, the chance to be real. I became terribly self-conscious, especially in the early days, that my synapses didn’t fire as readily – that I wasn’t as fun as I used to be, and that whenever I was asked how I was going, I seldom had an interesting answer.

I spent so much energy grieving for the old me that there was little left to try to love or offer self-care to the new me.  

Is there a place for this narrative too – this one that feels so painful but important to tell?

Jess has ideas on this too. It’s OK to feel how we feel, and to articulate it. This is the job of our inside voice: to talk, when we need to, about the wretchedness of this, until we feel heard and acknowledged. But our inside voice can’t be where we stop. Our outside voice, how we take our experience and frame it, is the key to change. That’s how the bad stuff becomes fuel for the good. It’s the duty of care we owe ourselves and each other.

In Jess’s view, we need to lead the long COVID story with a message of hope, following on with the evidence, to activate for solutions. In her words, hope is the difference between saying ‘long COVID sucks’, and ‘long COVID sucks – let’s act’.

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It’s three weeks today since I got my second bout of COVID. I’ve taken a step backwards in health, for sure, but I’m way less sick than I was at the same point the first time around.

I started writing this yesterday. I couldn’t write for hours on end, but I reckon I did a solid three-hour stint – and when the time came for a break, I allowed myself a dorky little grin of satisfaction. I went for a walk after that, and while I would have liked it to be a run, the slower place let me crunch along a gravel path through the nearby bush reserve, enjoying the sun and the songs of the birds. After that, I met with old school friends for lunch, and when they asked me if the café was too loud, I actually told the truth. We went instead to a quieter place next door. I knew the walk and the lunch would tire me out, so I factored that into my energy budget for today – giving myself permission to sit in bed in my PJs until noon, slowly adding the final paragraphs to this draft. If I’m honest, I’m pretty pleased with how it’s turned out.

I will send this now to my friend Jess, let her review it: her comments will be nerdy and thoughtful and supportive and kind. And I will give to her the final words. “I one hundred percent believe in hope on this. I mean, I just need it”.

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1. 1984 Tapanui & West Otago Outbreak - MEpedia (me-pedia.org)

2. ‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal | George Monbiot | The Guardian

3. Full article: Chronic fatigue syndromes: real illnesses that people can recover from (tandfonline.com)

4. Success in treating persistent pain now offers hope for those with Long COVID (theconversation.com)

5. ANZMES responds to The Conversation – ANZMES

6. Chronic fatigue syndrome and long covid: moving beyond the controversy | The BMJ

7. Narratives and frames unlock change — The Workshop