From ‘yuppie flu' to ’anti-recovery activists’

Why narratives around ME and Long Covid matter – and how to change them

Today’s guest post is… not a guest post. A few weeks ago, Karen found some time to sit down and write about some of the thinking behind the campaign, including the links to the work she does in her day job. Karen is the co-founder of #ThereForME and, when not spending her time on the campaign, works as independent researcher and policy analyst with experience across the international humanitarian, development and human rights sectors. She works with various clients, from the Red Cross to the UN, and is affiliated as a Research Associate at ODI Global.

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Recently, I’ve been thinking a lot about narratives. For people in my work orbit, this will come as no surprise. For the past decade, I’ve worked in the humanitarian sector, doing a mix of research, policy analysis and advocacy. It’s a job that I love, which gives my life a lot of meaning – and which, for a long time (thanks to Covid and ME), I thought I might need to give up entirely. 

Around two years ago, just as I was getting back into the swing of work, I took on a research project exploring narratives around the war in Ukraine and how they have impacted humanitarian action. I’ve dabbled in narratives-centred work for a long time. My area of expertise is refugee and migration policy, which led to a long-standing interest in narratives and public opinion. To me, the opinions people hold, the reasons behind them and the narratives that shape them are fascinating. 

My recent work on narratives and the war in Ukraine has been my biggest, and longest, deep-dive into the topic. Having spent two years thinking a lot about narratives in my day job, what I can say is this: narratives are infectious. They matter. And once you start noticing them, it’s hard to stop.

Why do narratives matter?

Narratives are how we make sense of the messy reality around us. Pretty much every single narrative – including the ones we personally agree with – cherry picks from the facts. Narratives happen when we pick up little fragments of the world and string them together into a coherent story. Narratives are almost always an oversimplification and don’t leave a lot of room for nuance. Behind every single narrative is a patchwork of assumptions, often of varying degrees of validity. 

Narratives matter because they can, and do, shape decision-making and action. We see this across society and in government policymaking. Narratives shape the way we look at decisions, the choices we see in front of us and why we see different options as more or less compelling. This is true whether or not we like it – and even when narratives are built on sand. 

Narratives, ME and Long Covid

So what does all this have to do with #ThereForME? Since getting more involved in the world of ME and Long Covid advocacy, I've been thinking a lot about the narratives that shape the possibilities for progress. 

There’s a group of long-held narratives that will be familiar to many with ME: the idea that ME is just a bit of tiredness. And so, who could be blamed for thinking, ‘We’ve all been tired before, how bad can that be?’ The idea these patients just need to pull themselves together, push through. Maybe they’re exaggerating their symptoms, maybe it’s hysteria, maybe it’s just the ‘yuppie flu’. Maybe they don’t want to get better, maybe they’re not trying hard enough. At the extreme end, maybe they’re ‘anti-recovery activists’. It’s been well documented how these narratives link to the biopsychosocial model of ME, and in the UK have sometimes been actively promoted by its proponents. 

This view, and the narratives that come with it, have long been dominant across medicine and wider society. Patients go to healthcare expecting empathy and are dismissed and disbelieved. Relationships with friends and loved ones are irreparably broken because of the question (said or unsaid): ‘Why can’t you just get over it?’. Biomedical research goes unfunded because, well, why bother when it’s just some tiredness that a bit of exercise, and maybe some cognitive behavioural therapy (CBT), could fix? While the biopsychosocial model of ME has been debunked, the narratives that come with it linger, with extraordinarily damaging effects. 

Lately, parallel narratives have affected people with Long Covid, who have faced similar symptoms and near identical challenges being taken seriously. Yet in the face of this, and in spite of clear overlap between the two conditions, there has sometimes been a narrative of Long Covid as a new, unprecedented illness. Frankly, I’ve found this hard to swallow. Because isn’t it just letting us all off the hook for decades spent dismissing ME and infection-associated chronic conditions as hysteria, rather than searching for solutions? Isn’t it important to talk about why Long Covid has caught our health service on the back foot?

Elsewhere, there’s an equally problematic narrative that sometimes comes from those who are more sympathetic. The idea that ME, even if we’re taking it seriously, is a ‘complicated’ or ‘mystery’ illness that has confounded scientists for decades. Of course, what this narrative leaves out is the decades of under-funding biomedical research. What isn’t complicated when you haven’t made an effort to understand it? The danger is that this narrative paints ME as a lost cause. A problem too big to fix. It also ignores the fragments of knowledge, the small clues, which science and the frontiers of medicine have offered over time – and, with Long Covid, at an accelerating pace.

What would better narratives look like?

Something I’ve learned from my work on narratives is how they can be incredibly difficult to displace once they’ve taken hold. It’s not enough to point out that a narrative is flawed. Myth-busting is never enough. You need to build a different narrative. One that’s more, or at least equally, compelling.

What would better narratives look like? To start with, I think understanding what’s gone wrong in the past, and bringing that into our public debate, is part of understanding the mess we’re in right now – so that we can fix it for the future. There’s a reason why we – as people affected in different ways by Long Covid – named our campaign #ThereForME. Because we think the first step is bringing the two together: the murky history and the painful present.  

We need to talk about how ME is about so much more than tiredness. We need to find accessible ways of explaining the hallmark symptom of Post Exertional Malaise (PEM), which is key to understanding why it isn’t just as simple as pushing through. 

We need to build the narrative, which we’ve already seen growing, about how severe this disease can be at the extreme end. We need, and have tried in our campaign, to be unflinching about how severely this disease can impact lives. That this is a multi-system disease that in its most extreme form can kill. We need to explain better how there is nothing like the requisite level of care available, that NHS care simply is not safe.

But more than anything, we need to build the narrative that this is fundamentally fixable. From HIV to multiple sclerosis, we’ve seen how quickly diseases can go from misunderstood and stigmatised, to life-altering but treatable. Why can’t ME be next? Why not replace scepticism, defeatism and talk of ‘mystery’ with a focus on political will, adequate research funding and innovation? 

What I can’t say enough is how getting a grip on this isn’t just the right thing to do, it’s the smart thing to do. Think about the people out of work. The children who are out of school. The pandemics that might yet hit us. It should matter to everyone in our society that we get this right. Let’s build a narrative around that.

We all have a role to play shaping narratives

One of my main takeaways from years working on narratives is that narratives aren’t fixtures in the world, they’re something we all have the power to influence. 

In the many conversations we’ve had in #ThereForME HQ we’ve talked a lot about how we shape our messaging – because we think it matters. There’s still a long way to go but we see signs that public narratives (at least in the UK) are slowly shifting. We’re committed to giving everything we have to pushing for more progress.

So, while I bring my work on narratives to a close in my day job, it’s hard to escape how it has influenced the way I see the world and the policy dilemmas that shape our lives. It’s hard to unsee the damaging narratives that have held back progress for people with ME for far too long.

I’ve spent a lot of my career studying narratives. All I can hope is that, with #ThereForME, I’ll be able to put these skills to good use. We all have a role to play shaping narratives. We’re more than ready for our campaign to play a part.