The Patient Who Isn’t Supposed to Exist

I taught Cognitive Behavioral Therapy (CBT) before Long COVID made me a patient. WIRED got the story exactly backward.

WIRED ran a piece by Alan Levinovitz called “The Painful Truth About Long Covid.” The frame is one I have seen many times now. There is a way forward, the argument goes, a set of mind-body tools that could help people like me, and the only thing standing between us and relief is a patient community too rigid, too ideological, too invested in its own suffering to allow the conversation.

I want to respond to that, because I am exactly the person the article says does not exist. And I think the clearest way to take the argument apart is to do it from inside the body it claims to be speaking for.

The argument, stated fairly

Let me give the piece its strongest form, because the version worth answering is the real one, not a strawman.

The claim has two parts. The first is that cognitive and behavioral approaches, broadly the family that includes CBT and graded exercise and brain-retraining programs, have something to offer people with Long COVID and ME/CFS, and that the patient community reflexively rejects all of it. The second, sharper part is that this rejection is not really about evidence. It is about protecting a narrative. If the illness has to be understood as purely physical, with no behavioral component, then a behavioral treatment that works would undercut the disability claim. Resistance to the tools, in this telling, is principle dressed up over incentive.

That is the argument. Now here is why it falls apart, and why I am a useful place to watch it fall.

I taught the thing the article says I reject

Before I was a patient, I worked in behavioral health. My degree is in psychology. I spent nearly a decade working with abused and vulnerable children before I ever set foot in the retail career that came later. During those years I taught cognitive behavioral therapy techniques to program administrators. I used it directly, in individual, group, and family sessions. I have watched it change lives, including in rooms I was running.

I believe in CBT. Not as a slogan, as a professional judgment formed over years of practice. I have been in it myself twice in the last thirty years. I have helped other people find CBT therapists and watched their lives get better for it. If there were a list of people predisposed to defend this modality, I would be near the top of it.

I am telling you this up front so that what comes later cannot be dismissed the way the article dismisses everyone. When I describe the limits of these tools for this disease, I am not a frightened patient lashing out at a therapy I do not understand. I am someone who taught it, used it, and recommends it to this day, drawing a line I know how to draw. Keep that in mind when you read the rest.

What I actually did

The article says patients like me refuse the tools. So let me tell you what I refused. But first, who the virus actually hit. Before I got sick I walked six miles in under ninety minutes, at least five days a week. I was not deconditioned, and I was not afraid of exertion. I was a fit man with a demanding job and a body that did what I asked of it.

I am fully vaccinated. I got the Pfizer vaccine in the first batch released, within two months, because I have stage 3B chronic kidney disease and was flagged as high risk for severe illness. I have had two boosters. I did everything the public health guidance asked of me, early and on schedule, and I got COVID anyway. First confirmed infection September 2021. Second January 2022. Third February 2024. Long COVID arrived despite my doing everything right, and it got worse with each round.

After the first infection: profound fatigue and a daily headache that never left. After the second: the fatigue deepened and the headaches became migraines. A neurologist ordered the first MRI of my life. He told me my brain did not look like the brain of a forty-eight year old. A follow-up showed increased lesions. I have never had a head injury.

Then came the treatments. Here is the part the article needs you not to know.

In September 2022 I began working with a specialist at Johns Hopkins. She tried a nerve block for the headaches, a series of injections into the back of my skull. I am severely needle phobic. I did it anyway. It did not help.

In August 2023 I started physical therapy with someone who said she worked with post-exertional malaise (PEM) patients. She began each session with ten minutes on a stair-stepper, moved to standing resistance-band work, and finished with time on a treadmill. After the second session my PEM spiked hard. Within a little over a week my doctor told me to stop. This is not an anecdote about a patient who would not exercise. This is graded exercise, administered by someone who claimed to understand the disease, producing exactly the harm the evidence says it produces. I was the willing one. The method was the problem.

In November 2023 I worked with a speech-language pathologist for the brain fog, three weeks of strategies for word-finding and memory. The tools were good. They helped me function. They did nothing to remove the fog itself, which deepened every time PEM hit. The word-finding failures were, and still are, infuriating.

In May 2024 I started my second round of CBT, again as the patient rather than the person delivering it. I recognized the techniques as they were being taught to me, because I used to teach them. We worked on breathing, on recognizing triggers, on shifting focus instead of spiraling into catastrophic thinking, on understanding what that spiral costs. After nearly two months my therapist told me I had learned and implemented everything the approach had to offer, that I should keep using the techniques, and that there was nothing further we could accomplish. I have used them ever since, regularly, whenever symptoms climb. They help me cope. They have not meaningfully reduced my pain, muscle weakness, or my PEM.

Read that sequence again. Nerve blocks through a needle phobia. Graded exercise. Speech therapy. A completed course of CBT, taught to a man who once taught it, who still practices it. That is the chart of a patient who tried everything the article accuses him of refusing.

I did not only seek treatment. I volunteered for the science.

There is a part of this the article’s frame cannot survive at all.

I am enrolled in research. I participated in two NIH RECOVER studies, the federal effort to understand exactly the disease the article treats as a narrative problem. One examined whether the virus crosses the blood-brain barrier. The other trialed an extended course of Paxlovid. Between them: months of participation, surveys, site visits, repeated blood draws, and optional visits I chose to add on top of the required ones, every one of them another blood draw, which is not a small thing to volunteer for when you are as needle phobic as I am.

Sit with what that means against the article’s premise. The piece casts patients as obstacles to progress, hoarding a story, standing in the way forward. I am a subject in the search for the way forward. The person being called an impediment to the science is inside the science, giving his blood and his time to it. That is not a defense of myself. It is the article’s argument turned exactly upside down.

What the community actually rejects

So when the community pushes back, understand what it is pushing back against, because the article blurs the line on purpose, and the blur is where the argument lives.

The community does not reject CBT. I have taught CBT. What it rejects is CBT and graded exercise sold as a cure, premised on the idea that the illness persists because the patient holds a false belief about being sick, and that correcting the belief and pushing through the symptoms will restore function. That is a different claim, and it is not rejected out of stubbornness. It is rejected because of what happens when it is followed.

This is the distinction I spent years on the clinical side of, so let me be precise about it. CBT is extraordinary at what it is built for: changing the relationship between thoughts, feelings, and behaviors, loosening catastrophic spirals, building coping capacity. It is not built to repair a dysregulated immune response or restore mitochondrial function after a viral insult. Asking it to cure ME/CFS is not a controversial stretch. It is a category error, like prescribing a splint for an infection. The splint is a fine tool. It is the wrong tool for that job, and insisting otherwise does not help the patient. It blames them when the wrong tool fails.

After an extensive review of the evidence, the UK’s National Institute for Health and Care Excellence concluded that graded exercise therapy should no longer be used for ME/CFS, and that CBT is only supportive care, not a cure. NICE judged the supporting exercise trials to be of poor or very poor quality, and independent analyses have detailed why: unblinded designs leaning on subjective self-report, weak control groups, and outcome measures that shifted along the way.

The deeper problem is older than any trial. The behavioral model of this illness was built by quietly erasing its defining feature. The original, documented hallmark was an abnormal failure to recover after exertion, the thing now called post-exertional malaise. The model replaced it with ordinary fatigue, and once you make that substitution, “just build up your activity gradually” sounds reasonable. It is not reasonable. It is the precise instruction most likely to injure someone with PEM, because their exertion does not produce tiredness that rest fixes. It produces a crash that arrives a day or two later and can take weeks to climb out of. I know, because a physical therapist who said she specialized in PEM did it to me in two sessions.

So the community is not a mob protecting a story. It is a population that watched a treatment paradigm hurt its own members and now flinches when the same machinery rolls out under a new name. That flinch is learned, and it was learned the hard way.

The accusation, and the math

Now the uglier claim. The suggestion that patients resist these tools to keep their disability benefits is not an argument. It is a smear, and it is built so that no patient can escape it.

Watch the structure. Accept the treatment and improve, the model is vindicated. Accept it and do not improve, you did not try hard enough. Reject it, you are protecting your benefits. There is no response a sick person can give that the frame will count as honest. That is not a hypothesis. It is a trap with the exits painted on.

But set the logic aside and run the numbers, because economics is what I write about.

The accusation requires you to believe that large numbers of profoundly ill people are choosing to stay disabled, surrendering their careers, incomes, identities, and most of their daily lives, to protect a benefits payment. You have to believe the payment is worth more than the life. It is not. Long-term disability and SSDI replace a fraction of a working income. Nobody who has run the actual comparison between a salary and a disability check makes that trade on purpose. The incentive the article imagines does not survive contact with a pay stub.

I know this, because I fought the trade in the wrong direction for as long as my body let me.

In November 2024 I returned to work part time, planning to build from two days a week to three. I never reached three. I pushed up from twelve hours a week to sixteen, and that was the ceiling my body would allow. In February 2025 I was demoted out of a management position I had held for more than eighteen years, in a twenty-one year career with a high-volume retailer. I took the demotion rather than leave the company. I kept working two days a week, sixteen hours, by spending every recovery day at home running the CBT tools just so I could show up. I pushed through PEM that sometimes cost me five days of recovery to earn back two days of work.

That is not a man optimizing for disability. That is a man clawing to stay employed past the point his body could survive it.

And here is the fact that should end the conversation. My doctor has urged me to file for SSDI for nearly three years. I still have not filed. If I were the benefits-driven patient the article imagines, that paperwork would have been first, not absent. Almost three years of a physician’s recommendation, and I have not acted on it, because I did not want to be that person, the one the article assumes I already am.

The patient who isn’t supposed to exist

So put the whole picture together.

I taught CBT before I needed it. I did everything public health asked, and got sick anyway. I tried every tool the article says patients refuse, including the ones that hurt me and the ones I had to push through a phobia to attempt. I completed CBT and still use it. I volunteered for two federal research studies and gave them my blood and my time. I am, right now, trialing the calming nervous-system regulation practices that are the genuinely useful core of the very programs the article defends, stripped of the ideology that says my symptoms are a brain malfunction, run as an honest experiment with a clear scorecard and clear stop conditions. I read the studies. I clawed to stay employed for over a year past the point of safety. And I have left nearly three years of disability paperwork unfiled, reluctant about the benefits to the point of harming myself.

The article needs the resistant patient to be closed, irrational, and grasping. The frame collapses on contact with a single actual person. It just forgot to check whether that person exists.

What it cost to be that person

There is a price for being the patient who keeps trying, and I want to name it, because the article treats pushing through as the responsible choice and rest as the irrational one. It has that exactly backward.

The line the community actually draws is simple. Behavioral tools used as support help. Behavioral models sold as cures carry a documented record of harm. The honest version of the article WIRED published would have drawn that line, taken post-exertional malaise seriously instead of writing around it, asked why patients are wary instead of assuming bad faith, and talked to the people living inside the illness before deciding what they are too irrational to consider. I spent a decade on the clinical side of this work and I have spent years now on the patient side of it, and I am telling you the article got the line in the wrong place.

Here is what the wrong place costs.

In February 2026 the dam broke. That is my doctor’s phrase. After more than a year of pushing through PEM to keep working, I crashed into something that would not resolve. She put me on radical rest. I moved to the first floor of my own house because the stairs were beyond me. She recommended a commode chair and wanted me in bed, because the goal was to stop the cycle before it became permanent. She told me that if I did not, I could fall into a hole I might not climb out of.

That is where “just push through” leads for someone with this disease. Not to recovery. To a man who cannot manage his own staircase, being told by a physician at one of the best hospitals in the country that the danger now is not trying too little. It is having tried too hard, for too long, on the theory that effort was the cure.

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Fred Rossi writes “The Economics of Survival” at darthfoo.substack.com, where he documents living with a moderately severe case of Long COVID and ME/CFS. He holds a degree in psychology and spent nearly a decade in mental health work, teaching and practicing CBT, before a long retail career. He is available to be quoted.