Stories help people find good information about treatment and pain science. But this group, including Lauren Heathcote of King’s College London, is studying something more: whether telling and hearing stories can be part of healing itself.

They’re working with people with osteoarthritis, who often hear myths like “exercise always makes it worse.” (It doesn’t.) And with survivors of childhood cancer who live with pain and hypervigilance long after treatment.

It was exciting to see this work funded, studied, and put into practice. Pairing real stories with real science is what we’re doing here at Notes on Pain. Watch my short dispatch from Bangkok above.

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What is phantom limb pain?

If you’ve never heard of phantom limb, it’s the phenomenon that makes amputees feel as if their missing limb is still there. For most, that includes sensations of burning, stabbing, and electrical pain. So how can we feel pain from an appendage that no longer exists?

Pain arises in the brain, and it’s the brain that creates these phantom sensations – these convictions, even – that a missing arm still hurts. That pain is no less “real” than an injury to an arm that does exist. But here’s the thing: pain is not created entirely by the brain – not even phantom limb pain.

In my experience as a researcher, a journalist and a person living with chronic pain, the science just doesn’t support the idea that the brain can make up pain out of thin air, or even out of a past traumatic experience or memory. There’s always some sort of biological trigger; usually in the body, but not always. That’s what we call a pain generator.

So where does the pain come from?

In the case of phantom limb pain, and many other types of neuropathic pain, the pain generator is the sensory nerve that’s been cut or damaged. It has to do with our sensory system anatomy. You see, all of the nerve cells, or neurons, that sense our physical environment actually live in little pockets outside the spinal cord, and each cell sends a long axon out to the body, like a specialized feeler that collects sensory information. Hundreds or thousands of those long axons travel out to the body together in bundles we call nerves.

When an arm is amputated, those nerves, those long axons, are cut. But the sensory neurons are not gone or dead. In fact, research has shown that damaged nerves can become overactive, generating spontaneous sensations of pain – in this case from a limb that’s no longer there. A 2014 study showed that phantom limb pain does in fact originate from these peripheral nerves, when researchers injected amputees with lidocaine, a local anesthetic that silences sensory neurons, either in the spinal cord or at the dorsal root ganglia (DRG), those little pockets containing the sensory cells. The result: patients no longer felt pain or in fact any other sensation from their phantom limb. (Unfortunately that’s not a viable treatment option.) So while brain networks do undergo reorganization in response to amputation, and the brain does in fact create the complex experience of pain, it doesn’t create pain in the absence of a pain generator.

What Fadel is finding

Now, all of that is the backdrop for a podcast episode we’re putting together about how the brain creates pain from those aberrant signals. In Fadel’s small pilot study, five amputees took psilocybin and four took a placebo. Two and four weeks later, the psilocybin group - but not participants receiving placebo — reported significant reductions in phantom pain. It’s a small, early study, and Fadel is the first to say it’s not a silver bullet. But he’s now running a larger trial.

Fadel’s work, which has also examined mindfulness and meditation in the context of pain, provides new insights as to how we humans interpret that activity, and how it leads to suffering, which is not the same as pain. In both the patients taking psilocybin and in meditators from other studies, brain scans showed quieter activity in the default mode network, a set of regions that are active when we turn inward, ruminating and thinking about ourselves. It’s a fascinating new way of looking at how we can shift brain activity to suffer less. Even if the pain generator is still squawking, we have tremendous power to shape our experience of pain.

I can’t wait for you to hear the full episode.

A postcard from San Diego

Which brings me back to San Diego. Who doesn’t love San Diego? I know I sure do. Living in the Los Angeles area, I’ve had the chance to visit our fair neighbors to the south many times – although I’ll admit, most of that has been inside the halls of the convention center and hotels at neuroscience conferences. On this reporting trip though, I took the opportunity to visit college campuses with my teen daughter, who’s off to college next year. I also attended the wedding of a lab-mate from grad school. It was so cool to see a bunch of “kids” that I knew back in the ‘90s in Portland, Oregon, during grad school, and see where everyone has landed. The back-yard wedding took place on the edge of one of San Diego’s countless suburban canyons. An owl perched on the bloom of a century plant as the sun set and the full moon rose. Conversations ranged from astronomy to cancer biology to ion channels and European history. As one old friend put it lovingly, “What I love about this party is that there are so many different kinds of nerds here!” True story, and we relished each other’s nerdy company.

But I digress. If you or someone you love has suffered with phantom pain, hit reply or leave a comment. We’d love to hear from you. And we’ll let you know when the episode is ready to drop. It’ll be sometime in early 2027.

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I’m a neuroscientist and a freelance science journalist, and I want to talk to you about pain. Chronic pain.

Did you know that one in four Americans is living with chronic pain?

And most of those people probably don’t even realize that pain research is going on. But it is, in labs across the U.S. and around the world.

And that’s what we’re going to talk about here at Notes on Pain.

I spent years as a journalist. My work appeared in Scientific American magazine, New Scientist, Knowable, and other places.

And then I was really honored to have a job at the National Institutes of Health, in the Office of Pain Policy and Planning.

And unfortunately, that office and my job were eliminated in April of 2025.

So I found myself back in the position of freelance journalist again. And I asked myself, and I asked a lot of people. I asked you. I asked people living with pain, and researchers, and healthcare workers: What would you like to see to get the latest information about pain research?

And that’s what I’m going to bring you at Notes on Pain: a weekly free newsletter, and a podcast coming soon.

Everything will be evidence-backed and fact-checked. I’m not selling anything here.

And the other important part about Notes on Pain is that you’ll hear the stories and the viewpoints from people living with pain.

So please join me here on Substack, and watch for our podcast coming soon.

Welcome to Notes on Pain.

Not the stubbed toe on the bedframe in the night kind, but the harder kind of pain – the chronic kind that can be unrelenting, and often unexplained.

I’ve spent my career trying to bridge the gap between the people who study chronic pain and the people who live with it. In 2024, I reached what I thought was the pinnacle: a job as a science writer at the National Institutes of Health. Then, in April 2025, DOGE cuts eliminated the Office of Pain Policy and Planning, and my job along with it. Our goal was to make sure patients and the professionals that care for them saw the benefits of new research and discovery. Because of the cuts, that’s not happening.

We need to build that bridge. That’s what Notes on Pain is about.

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I’m Stephani Sutherland, PhD, a neuroscientist trained in pain biology and a science journalist for over 20 years. I, too, live with chronic pain, and it’s changed the way I listen to the stories of people who are suffering. My superpower is my ability to speak the language of both patients and researchers, allowing me to share information between them, while maintaining the ethics of rigorous journalism and evidence-backed science in my communication.

We’ve seen the worst consequences of poorly treated pain play out in the opioid overdose crisis. But chronic pain is itself a very real health emergency. Nearly one in four American adults across every demographic suffers from it. The burden falls hardest on rural communities, Native Americans, and Black patients. Women are more likely to live with pain that limits their work and daily lives, and more likely to be dismissed by caregivers. Pain is the top reason people visit their doctor, but physicians in the U.S. and Canada receive almost no training in pain in medical school.

I’ve seen researchers make tremendous advances in recent years – what drives me bonkers is that these discoveries aren’t reaching the right people: not the doctors prescribing treatments, and not the patients who are suffering. And even when good treatments exist, too many people can’t get them. That’s why Notes on Pain is so necessary right now.

After two decades as a journalist, I was honored to join the NIH as a scientific writer, working within the system. Then, in April 2025, the Office of Pain Policy and Planning was cut, and my job along with it. Soon after that, the non-profit patient advocacy org U.S. Pain Foundation released its survey finding that 70 percent of its nearly 2,400 respondents didn’t even know that pain research was going on. So I asked patients, researchers, clinicians and families what they thought I should do. The answer was clear: deliver the latest in pain research in language that’s easy to understand.

That’s what I’m doing now. And I’d like to invite you to join this community, where we’ll follow the latest research, and where you’ll get to learn what pain science means in practice. You’ll hear the voices of people living with the experience of chronic pain and the expert researchers and clinicians we’ll talk with are truly experts; you won’t find any influencers hawking supplements here.

That doesn’t mean we’ll have all the answers. Pain is complex – it’s not just physical, but also cognitive, emotional, even social. Pain affects every part of life, from movement to sleep to work and relationships. We’ll delve into all of that with scientific rigor, compassion and respect. And we’ll ask why so many people still go without the care they need.

So, how does Notes on Pain work? Joining our community is free and always will be. You’ll receive our weekly newsletter and upcoming podcast, where you’ll hear the stories of people living with pain, brought to life in a way a news article never could. As the project grows, some deeper material will move behind a paywall to help fund the work. Subscribe now and you can lock in a charter rate for life. If you have the means to give more, Founding Supporters help make the journalism possible and get live access to our expert convenings. And Patrons, who provide the critical support that lets a project like this launch, receive special recognition on air.

So please, I invite you to join me here each week. Wherever you’re coming from – whether you’re living with chronic pain, or your loved one is struggling; if you’re a healthcare worker eager to understand the pain you’re seeing and frustrated at the lack of information – please join me on this journey toward a clearer understanding of pain.