#29 - Millions missing with ME/CFS (with Elisa)

What actually is ME/CFS? Is “chronic fatigue” an adequate descriptor, and is it a women’s disease? When someone we know is struck by serious illness – or loss, or trauma, for that matter – how can we continue relating to them, their pain, and the gaping distance that their unequal burden opens up between us?Elisa (“Elli”) was an energetic, idealistic young person with everything to play for when she developed post-infectious ME/CFS, and her life changed beyond recognition. After being mostly bed-bound in the early years of her illness, she now has, on good days, a few hours in which she can re-emerge into the world of the well and “dance to their music” for a while, as she puts it. Even then, the experience is overshadowed by knowing that she will soon have to return “back under the sea” – to navigate pain, exhaustion and sensory overwhelm as best she can, in the dark, alone.It cost Elli precious energy to do this podcast, but she wanted to. She hopes to raise awareness of the condition, which affects an estimated 0.5–1% of the population(!). People with ME/CFS are largely absent from public conversation, because most are in no state to do any advocacy. Since Long Covid entered public consciousness, their predicament has become slightly more visible. But ME/CFS remains poorly understood and under-researched. It is still too often misconceived as psychosocial, with an implied charge of malingering – a framework that has been widely discredited. The fact that most patients are women likely doesn’t help.To me, this episode is both a public service announcement to draw attention to ME/CFS, and an attempt simply to remain present in the face of unrelieved suffering. Although Elli’s life has been devastatingly constrained, her voice sparkles with a warm intelligence that colours every subject, even this one. The reality of her predicament is hard for any empathetic listener to take in, but she somehow summons the tenacious grace to reach across that divide, and connect in heartbreak.*****Music outro credit: “I can’t run when I’m dreaming” — music and text by Madelleine Müller. Performed by Madelleine Müller (vocals) and Matthew Adomeit (double bass).Find her work on https://madelleinemuller.com. Madelleine has ME/CFS. This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit carrie802897.substack.com

What, at its heart, is hospitality—and how is it different from service, or from simply sharing a space? In a highly monetized and transactional society, can concepts like home and welcome still be genuinely meaningful in the public sphere?Steven Walter is the artistic director of Bonn’s Beethovenfest. This year, the festival returned to the elaborately restored Beethovenhalle, a post-war concert hall designed to welcome rather than overwhelm—a deliberate break from the intimidating monumentalism of fascist architecture. Steven’s ambition there is not just to program great music, but to embed that experience in the intimacy of genuine hospitality.We talk about the origins of the classical concert setting, why good hosting comes more naturally to some places than others, and the ambivalent role of “Heimat” (home, homeland, with all its baggage) in the German psyche. Mostly, though, this conversation is a sketch of what belonging might mean. As Steven points out, populist movements draw much of their energy from an unmet yearning for belonging, and universal liberal values don’t seem to offer a concrete enough answer. He believes art can create the kind of inclusive, optimistic spaces where civil society moves towards more coherence by hosting itself.*****Music outro credit: “Der Leiermann” from Winterreise — music by Franz Schubert, text by Wilhelm Müller. Performed by Thomas Quasthoff (bass-baritone) and Charles Spencer (piano).*****Somewhat abridged version of Steven’s Beethovenfest 2026 opening speech:Heimat [home, or homeland] seems to be at once the most natural and the most complicated thing we Germans can feel. It’s simple, because everyone has a Heimat and can describe it even from far away, as Beethoven once did in a letter to a childhood friend from Bonn:QUOTE “The beautiful country where I first saw the light of day is still as beautiful and clear before my eyes as when I left you. In short, I will count the time when I can see you all again and greet our Father Rhine as one of the happiest events of my life.”It’s also complicated: in that same year, 1801, the early Romantic poet Novalis posed and answered the great Romantic question in his novel Heinrich von Ofterdingen: “Where are we going, then?” His answer, “Always home.”Beethoven and Novalis shaped Romanticism in the arts, and its mythical, iconic home lies just up the Rhine from here. Romanticism expresses an unquenchable longing and restlessness, and a sense of Germanness that is both nostalgic and forward-looking at the same time. That feeling gave rise to much great art. In the 20th century it also contributed to civilzational meltdown, and to this day, in Germany it gives the idea of Heimat a meaning that is at least ambivalent.For all its national ambivalence, Germany has at least been able to take refuge in music, often and with great success. I would argue that cultural life today could ease some of the tension around this subject, a tension that low populist forces are once again exploiting.Heimat is local. It lives in homes, wherever people are sufficiently sovereign to invite one another in and share experiences. Heimat therefore intrinsically comes with a concept of hospitality, and here we can learn a lot from other cultures. “The guest is the soul of the house,” says a proverb from Georgia, a country we are focusing on a great deal this year.This is especially true of music, which always lives from the relationship between host and guest. So of course you, our valued audience, are also the soul of this house.What makes this region and this city so lovable is, above all, how deeply the people here love it.The ancient Greeks had a beautiful word for this: topophilia, the love of place. I have never met more love of place than here in the Rhineland, and no crisis of politics or public infrastructure can change that. Love, as we know, is irrational. But it is also contagious. It spreads virally in upward spirals, and it is inclusive and embracing.We want to offer this irrational love to our guests in the form of excellent hospitality, by opening this place up to the community, not just during concerts. It seems to us that today, the essence of culture is a warm welcome, a personal encounter and a convivial evening for the whole person, combined with an artistic experience that resonates deeply.During this year’s Beethovenfest, we will explore this theme through music in many different ways. There will be musical homelands that our artists bring with them from all over the world, music that tells of losing one’s home, of exile, flight, and homelessness. And there will be plenty of topophilia.We invite all people and all stories into this place, the newly renovated Beethovenhalle and surrounds. Everyone and everything is sometimes the host, and sometimes the guest. At its very core, society means sharing space.With this festival we hope to give you countless great musical moments. We also hope to give you the feeling that, amid all the turmoil in the world, we can share a place and a time for encounter and for open, creative and optimistic community. That, we believe, is the most powerful and most important contribution culture can make today as a democratic force in civil society. This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit carrie802897.substack.com

What’s it like for the particular slice of Gen Z who grew up on social media, but got AI in college? How do researchers approach the “mechanistic interpretability” of large language models that have no hard-coded logic or values? How can AI research help us understand our own and other minds, at individual and population level?Nicholas Budny is my little cousin. At 22, he’s the youngest guest I’ve had on the pod to date, and a lovely and very articulate one. This is a conversation about growing up various degrees of technology-‘native’, and also a snapshot of a generation before fully adult routines, calcifications or fearfulness have set in. I came away from it with a refreshed sense of the inherently upbeat tendencies of youth, which contribute a special energy to the world. Also, that thoughtfulness and competence did not run out after us millennials took our share.This episode was recorded a little while ago (summer ’26). So once again, an AI disclaimer: I’m painfully aware that any conversation that even brushes up against AI will seem out of touch by the standards of those deeper into the subject. And very quickly, it will become outdated by any standard. Nonetheless, I initiate them in the spirit of citizen amateurism, which I believe to be more important than ever at this time: if expertise and up-to-dateness are increasingly outsourceable, then daring to ask one’s own questions in human conversation becomes the real necessity.[Music outro credit: “April Joy” — music by Pat Metheny. Performed by the Pat Metheny Group. From the the album “ECM”, 1978] This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit carrie802897.substack.com

What is it about midlife that hits so many of us as unexpectedly liberating? Does the meaning of concepts inevitably become richer with experience? When it does, how is that philosophically relevant? And, does a middle aged spirit animate Christopher Nolan’s Odyssey?There isn’t much by way of terrain that the philosopher Markus Gabriel won’t touch. Best known for founding the philosophical movement of “New Realism”, his most recent book is “Ethical Intelligence”, an optimistic take on the possibility for human moral improvement through lucid partnership with AI. He holds the chair for Epistemology, Modern and Contemporary Philosophy at the University of Bonn, where he also directs the International Centre for Philosophy.Markus is also a neighbour and friend, with whom it’s always fun to have a winding and occasionally spicy conversation.[AI disclaimer - I’m painfully aware any conversation that even brushes AI will seem touchingly out of touch by the standards of those deeper into the subject. And very quickly, it will become outdated by any standard. Still, I do it in the spirit of citizen amateurism, which I believe to be more important than ever in the age of AI: if expertise and up-to-dateness are increasingly supplementable, then daring to ask one’s own questions in human conversation becomes the real necessity.]Music outro credit: from The Trial of the Bow / Vengeance, Music by Ludwig GöranssonFrom The Odyssey (Original Motion Picture Soundtrack), a film by Christopher Nolan This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit carrie802897.substack.com

What is it to be “scientifically minded”? At the scale of Nature, how predictive are the mechanisms we can analyze experimentally? Is something more true when we can express it with elegant math?If science is about understanding what is, then the goal in science, as in philosophy, should be to “see clearly and to see whole.” But the scientific method, as well as the scientific temperament, demands replicability and generalisability. So the object of study is isolated and variables controlled, which in the case of living organisms means that scientists must draw variously artificial boundaries.The field of ecology and evolutionary biology —or, Life Itself— has a way of pushing back against such reductionism, when conclusions arrived at in this way don’t scale up. The goal after all is not to dis-assemble in order to re-engineer (or at least, any biosphere-level re-engineering is much, much further down the line). The more humble objective of just understanding what is in fact going on turns out to be much harder than one might think.Rachael Winfree is a Distinguished Professor in the Department of Ecology, Evolution, and Natural Resources at Rutgers University. The goal of her work is to better understand the causes and consequences of biodiversity change, particularly in real-world settings and at large spatial scales, primarily by studying bee pollinators and pollination as a model system.I loved this conversation. It somewhat clarified for me something I’ve been mulling for a long time: how to characterize the big unsatisfactory conceptual knot at the heart of the well-intentioned “ecosystem services” framework for nature conservation. Nature is unimaginably complex, stochastic, beautiful and inter-dependent; attempts to specify and price the “services” we get and need from nature are about as reductive as Skinner’s stimulus-response approach to understanding behaviour, applied to childhood development. Or a nexus-of-contracts theory of the firm, for that matter. Such accounts are somewhat mechanistically predictive in a very artificial frame, but brutal and irrelevant at the scale of actual life.This doesn’t answer the thorny policy questions of how to think about trade-offs between conservation and other worthy aims, even from a purely human-centric view. But it was a very good reminder that we’d best not dissect our umbilical cord while it sustains us, and even sophisticated accounting is at most a map, never the territory.Music outro credit: "Jerusalem: Responsorio segundo de S. S. José" — music by Ignacio de Jerúsalem. Performed by Chanticleer, directed by Joseph Jennings, with Chanticleer Sinfonia. From the album Mexican Baroque: Music from New Spain (1994). This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit carrie802897.substack.com

Why are so many thoughtful people I know obsessed with the Enneagram? It’s easy to find deep-dive content, but really hard to find a reasonably compact overview that would help one decide whether to go for the deep dive.Having tried and failed (in a good way) in episode #23 to get an analysis from an enneatype 4 of how he would navigate the Enneagram framework in relation, I realised I needed to identify an enneatype 5 for the task. And lo and behold, having found one, he rattled off a really efficient overview map of the nine types, pointing out how they’re all distinctly familiar, how they typically relate to each other, and how thinking in this way can be illuminating relationally and spiritually. Thus far, the typology works.Michael Ceragioli is a scholar of Christian spirituality, and his explanation is methodical and systemic—as you’d expect from a self-professed enneatype 5. The focus of his work with the Enneagram is in supporting a path of spiritual transformation, but he is not dogmatic about any of those concepts. This is a pretty dense conversation—I invited a download. It’s also shot through with Michael’s characteristically practical insights and humour, so that it did not seem long to me.If like me you’ve been skimming around the enneatypes and you’re struggling for orientation, it’s a really useful review and clarification of how the types makes sense individually and within the framework.Music outro credit: “Metamorphosis” — MLCK This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit carrie802897.substack.com

Every day I encounter (and perpetuate) the casual use of pop-psychological terms to describe personality types - we talk about left-brain-y vs. right-brain-y people, attachment styles, Enneagram types, drama triangles, introversion and extroversion… But how much do such frameworks help us to constructively understand ourselves better, versus simply justifying our foibles? How illuminating are they for understanding resonance or conflict in relationship, the things that trigger or befuddle us about other people?River Kenna is, for these purposes, an Intuitive. I try to pin him down on his favourite personalty type framework, but it turns out he holds them all pretty lightly, orienting first and foremost towards an intuitive grasp of Gestalt. Analysis is only good for filling in the gaps, a working theory of mind helpful to the extent it facilitates the “prosthetic empathy” that is available on perceiving another’s innocence. It’s that way around, he would argue, that we really understand anything at all.This is a suitably meandering conversation. We talk about our culture’s fixation with “left-braininess” and the tendency to rationally check intuitions, but fail to intuitively check rationalisations; the “existential kink” of recurring relationship patterns; and the benefits of having some understanding of one’s own psychological and attachment vulnerabilities when interfacing with other minds (including AI).One insight that I found particularly helpful: there is something extremely connective about understanding another’s core fear. Even if it is not one’s own primary fear, it’s usually possible to recognise and sympathise with a vulnerability, more than the impulses or convictions that might be downstream from it. It might not make a person one finds irritating more congenial, but it potentially creates a way to understand and humanise them.Music outro credit: “Ooh Child” — MILCK This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit carrie802897.substack.com

Why is there a different Chinese medicine paradigm that’s labelled “traditional”? Why do people in the West only tend to discover it when they’re confronting chronic illness? Does it ask us to adopt an alternative metaphysics?Allie Tao is a Chinese Medicine practitioner in Portland, Oregon. She didn’t set out to join the healing professions like the rest of her family, but her own journey of cultural analysis and engagement, illness and recovery conspired to lead her there.I was fascinated to talk to Allie about how human health is conceived in Chinese Medicine - being constituted of mind and matter, patterned in ways that reflect all of nature, and accessible through symbolic thinking. What I learned doesn’t seem at odds with Newtonian causality or the principles of biomedicine. But it is broader, and incorporates more of the experience of consciousness.Like most of my excursions on this podcast, this is a short and amateurish glance into a big topic. It was some unusually helpful and challenging grist for the mill.Outro: “Cutting up an Ox”, by Chuang Tzu, translated by Thomas Merton, read by Allie Tao This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit carrie802897.substack.com

What is the connection between Turner’s ethereal paintings of the Rhine and today’s nativist stories, in Germany and across the pond? How is it that the Romantics venerated individual sensitivity and universalist ideals, and yet prominent Romantic thinkers were so often beguiled by authoritarians? Why did Fascists find it so easy to repurpose this soft, dreamy material for their own ends?Thomas Mann was scathing about it: he famously described the Nazi project as German Romanticism “breaking out into hysterical barbarism.” Whether or not the average person in Germany is aware of this line of thinking, I do think some glimmer of it echoes in the plain, functional aesthetic - a fear that next to something pretty or moving could be the abyss. This has always struck me in contrast to the British nostalgia for frills and bunting, or the catchy sentimentalism of American Country music. People in Germany flirt with the vibe of course, in the ubiquitous opera houses, at Oktoberfest and with garden gnomes - but it has to be historic or formalized or a bit silly, and so ultimately deniable.Helmut Schneider is Professor Emeritus for Modern German Literature at Bonn University (with stints abroad, explaining this material to the anglosphere), so he seemed like a good person to answer such questions. His own interest in the period was fuelled more by the beauty of the language, the poetry in particular, than by its historical or political dimensions.But I was particularly struck by one of his psychological observations: that the Romantics’ preoccupation with the internal, with feeling, particularity, mysticism, and Nature writ large made them uninterested in institution building, or the frictionful mechanics of government. As a result, they were susceptible to anyone promising them a safe container for their solipsism. Kind of obvious and tracks to the stereotype at an individual level, but I’d never thought it through. It’s a squeamischness about mixing one’s creative labor with the outside world, whether in technology, commerce or politics. But failing to participate in shaping a society that values and protects what they contribute is a problem for any sensitive free spirit.The uncategorizable Goethe provides a possible answer, in an early 19th century survey of mediveal German art (that had been looted out of Church and feudal settings by the French). Against his contemporaries’ calls for a German Louvre, Goethe argued that the art should remain distributed, embedded in its historical locals and accessible to the population. Instead of a great central insitution, he advised the Kaiser that the way to elevate regional treasures was to strengthen their connectedness, into a web of culture that would incorporate the characters of particular settings. It was through greater communicative connection that the work would become an organic whole, greater than the sum of its parts.Music outro credit: "Mondnacht" — music by Robert Schumann, text by Joseph von Eichendorff. Performed by Dietrich Fischer-Dieskau (baritone) and Günther Weissenborn (piano). This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit carrie802897.substack.com

Dr. Bettina Wolfgarten is a third generation radiologist specialising in breast cancer. As we unpack what this means, it turns out the technology has changed so much that the job would be unrecognizable to her grandfather. But the throughline remains strong, in Bettina’s telling: a fundamental drive to look into the body as deeply and precisely as possible, embracing emerging technologies in an entrepreneurial way. The courage required to be decisive, and the importance of human trust even when the work is deeply technical.What stands out is how Bettina insists that the way she and the team (including her husband, indefatigable Dr. Matthias Wolfgarten) work should always help the whole person. Their combined practice and complementary offering at Forum Wolfgarten seeks to model what humane, holistic care along the entire patient journey could look like. Beyond their clinical work, they have founded the inter-disciplinary non-profit f.em to promote education, best practices, and civil society engagement at the interface between acute healthcare and healing.It’s truely astonishing what Bettina and Matthias do every day to better diagnose and cure this disease, which affects 1 in 8 women. It’s a passion project of theirs to enlist everyone else to help patients not just to survive, but to experience treatment in an environment of trust, and then to re-enter their lives and thrive again. This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit carrie802897.substack.com