long journey home

Where does psychology fit in the CFS puzzle? “Thinking myself well”? Or relating better to life?

Sometimes people tell me how I can “think myself well” from the Chronic Fatigue Syndrome (CFS). They have read an article, heard a story, or found that mindset or lifestyle changes helped them with their fatigue.

It’s meant well, there is a grain of truth in it, and it’s often based on a misunderstanding.

CFS IS A SERIOUS CHRONIC ILLNESS

CFS is a debilitating chronic illness and disability, with strict diagnostic criteria.

Although the exact cause is not yet determined, researchers agree that it is a biological illness, with biological causes, likely biological solutions, and typically triggered by an infection. Most likely, it’s caused by the body’s reaction to the infection, which is why it’s often called a post-viral disease.

It’s diagnosed after a long and thorough process to eliminate other conditions, often involving several different medical specialists each with their own tests and examinations.

Research has shown biological abnormalities in patients with CFS. This includes dysfunction in energy production, immune regulation, and the autonomic system. It seems that most if not all systems are impacted. These findings support what patients have reported, and strongly suggest that CFS is a physiological illness.

The dysregulation impacts multiple systems of the body and mind, including temperature, digestion, heart rate, cognition, and emotions. The bodymind doesn’t seem to have the energy or capacity to regulate as it normally would.

One of the core criteria is Post-Exertion Malaise (PEM). Any activity, whether mental or physical, worsens the condition, often severely and sometimes permanently. Rest can eventually bring us out of a crash, but it does not restore as it does for people who do not have CFS.

It has a severe and debilitating impact on those living with it.

WHAT IT IS NOT

CFS is not burnout, stress, depression, general fatigue, or another condition that may have a superficial similarity to CFS.

It’s not just “being tired“.

It has a different cause, a different trajectory, different symptoms, and different treatment.

WHEN PEOPLE TELL ME TO “THINK MYSELF WELL”

How does it feel when someone tells me to think myself well?

As I mentioned, I understand that it’s meant well and appreciate it.

I also understand that they don’t understand the condition. They may see it as a kind of burnout or a similar condition, in which case a psychological approach is appropriate and can reverse the condition.

CFS is very different. Science and patient experience shows it’s a biological chronic illness.

All health has a psychological and social component, and that doesn’t mean I can think myself well from CFS. I tried that approach for decades. At the different CFS clinics and centers I have been to, I have not met a single expert who thinks so.

So how does it feel when people treat it as a psychological illness with a psychological solution? It depends. It’s usually a mix of appreciation for the intention, and feeling not seen or understood.

MY SITUATION

I got CFS when I was fifteen, likely in response to mononucleosis (Epstein-Barr virus) some weeks earlier. During my twenties and most of my thirties, I was better, and then had a severe relapse in my late thirties following weeks of severe pneumonia. (I lived in a house with black mold at the time, with experts in the US and Poland think may have contributed to triggering it again.)

I was diagnosed at the CFS-center at the Oslo university hospital, after a process that involved a range of specialists and tests and lasted several years. The process involved interviews, blood tests, MRI, EKG, psychological evaluations, and so on. Specialist CFS clinics in the US and Poland confirmed the diagnosis.

I have all the usual symptoms of CFS, including PEM, brain fog, and general dysregulation of many of the systems of my body and mind.

It feels like living permanently with a strong flu or other infection, minus some and with the addition of other symptoms. Imagine having a strong lasting flu and trying to function in daily life for years and decades, and you get a rough sense of how it is to live with CFS.

It has severely impacted all aspects of my life.

WHAT WORKS FOR ME

Since the beginning, I have engaged with innumerable approaches to get better. Some alternative (herbal medicine, acupuncture, bodywork, energy work, faith healing, prayer etc.). Some psychological (therapy, cognitive therapy, inquiry, visualizations, gratitude.) And some conventional (pacing, rest, medicines, diet, climate). I have taken all of these seriously, learned from the best in the field, and engaged wholeheartedly with these practices or treatments, often for months and years at a time.

What I have found works for me are relatively simple physical approaches: Pacing. Rest. Reducing stress. Herbal medicine. Climate. Diet. (Specifically, resting before/during/after any activity. Prioritizing, learning to say no and asking for help. Siberian ginseng. Sunny and dry climate. Eating whole foods low on the food chain and avoid or minimize dairy, wheat, sugar, and processed food.)

I also suspect that hyperthermia helped me. After a hyperthermia treatment in Poland some years ago, I did much better for a while. I hope to try that again.

A psychological approach has been immensely helpful for me in relating to my illness and my life. In spite of my best effort, it has not helped the illness itself. I have used cognitive psychology, gone to several therapists long term, delved deep into several forms of inquiry, used several forms of visualization and gratitude practices daily for months and years, and much more. I am trained and certified in many of these approaches, and have been a client in many more. When I explore these, I typically go into it wholeheartedly and daily or weekly (depending on whether I do it for myself, or as a client) for months and years, guided by experts in the field.

It has helped me immensely to accept that I have a chronic illness and a disability. It was a huge relief to finally admit it, after 35 years of living with CFS and being label-adverse. It has also been immensely helpful to say it to others, and for them to understand the seriousness of the condition. When I just called it CFS, people often dismissed my condition – sometimes leading to severe crashes and a permanent worsening of my condiiton. Now, when I call it a chronic illness and disability, others take it seriously. I am fully open to my situation changing and to find health, and for now it’s a relief to admit this.

This is not how I expected it to be. I started out assuming, as some still do, that I could shift it through visualizations, meditation, intention, prayer, inquiry, and so on. What I instead found is that what stabilizes and improves my health are simple physical changes.

MATCHING THE TREATMENT TO THE CAUSE

In general, the treatment for an illness needs to match the initial cause. Or it needs to match what causes it to stay. What causes it to stay may be different from the initial cause1.

If the illness is mainly psychological in nature – burnout, stress, depression – then the most appropriate treatment is psychological, supported by diet, exercise, and so on.

If the illness is mainly biological in nature – cancer, a broken bone, CFS – then the most appropriate treatment is physical in nature, supported by psychological approaches, social support, and so on.

WHY SOME CAN “THINK THEMSELVES WELL”

Why can some think themselves well? I am not sure.

In some or many cases, they may not actually have CFS. They may be self-diagnosed without understanding the strict criteria required for such a diagnosis, or they may have received a quick diagnosis by a non-expert doctor. What they have may be more akin to burnout, depression, or similar, in which case a psychological approach works. The treatment is aligned with the cause.

In some cases, people with CFS get better for whatever reason or for no apparent reason. I was much better in my twenties and early thirties.

Even among those with a genuine CFS condition, there is diversity. It may be part of the solution for some and not for others.

THE PSYCHOLOGICAL APPROACH HAS ITS PLACE

I don’t at all reject a psychological approach to CFS or health and illness in general.

It can obviously help us immensely in how we relate to our illness and our life.

It can help us feel and function better.

In some cases, it can even play a role in recovery. At the very least, it can support recovery, along with other approaches.

IMPORTANT TO UNDERSTAND

At the same time, it’s important to understand a few things before recommending a psychological approach to people with CFS and other chronic illnesses.

As it looks now, CFS is a severe biological illness. If you wouldn’t recommend it to someone with cancer or a broken leg, think twice before you recommend it to someone with genuine CFS.

If you recommend it, do it in the context of relating better to the illness and life.

And as usual, the advice is for you. Take your own advice. Don’t offer advice to someone who hasn’t asked for it.

WHY SOME RECOMMEND A PSYCHOLOGICAL APPROACH

Why do some recommend a psychological approach to CFS which, according to what we know about it, is a biological illness?

As mentioned earlier, they may mistake it for burnout or something similar with a psychological cause.

They may want to be helpful, because they care.

They may want to try to help, to feel better about themselves.

WHAT’S MORE HELPFUL

Whatever is behind it, the intention is good.

And another strategy may be more helpful. Often, it just involves being present, listening, learning about the condition, and being generally supportive and understanding.

In general, if someone doesn’t ask for advice, they may not need it. They may just need you to be there and be a good friend.

NOTES

  1. In my case, it’s possible that the Epstein-Barr (EB) virus triggered the illness, followed by a low-grade EB infection damaging my kidneys and other organs and systems, and that damage continues even if the EB virus is gone. The illness and damage itself may be caused by an immune response to the virus. If the virus “hides” in the cells, the immune system may inadvertently damage healthy cells in an attempt to get at the virus. I don’t know if this is how it is, but it’s possible.

MORE INFO

After writing this, I asked ChatGPT to write about this, with some suggestions from me about what to include. See below.

CFS and the Myth of Thinking Yourself Well

Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), is a complex, physical, biological illness. It affects multiple systems — neurological, immune, and metabolic — and is often triggered by infections, toxins, or other physiological stressors. Its hallmark is post-exertional malaise: a worsening of symptoms after even small amounts of activity that would not have caused fatigue in a healthy person.

Despite decades of biomedical evidence, a persistent cultural myth remains — that people can “think themselves well.” The idea is that with the right attitude, beliefs, or mindset, recovery will follow. It’s a comforting belief for those who hold it, but for people living with CFS, it’s not only wrong — it’s often deeply harmful.

A Biological Illness, Not a Mindset Problem

CFS is not burnout, depression, or simple exhaustion. It is a biomedical condition involving impaired energy metabolism, immune dysregulation, and cellular dysfunction. It is a physical illness that limits the body’s ability to produce and sustain energy.

In contrast, burnout and stress-related fatigue are psychological and behavioral in origin. They arise from chronic pressure, emotional overload, and lifestyle imbalance. Because of that, they respond well to psychological or lifestyle interventions: therapy, rest, boundary-setting, meaning-making, and stress reduction.

This distinction matters. If the cause is psychological, psychological approaches can work. If the cause is biological, only biological approaches address the root of the problem.

Why We Know CFS Is a Biological Illness

Over the past decades, biomedical research has revealed a range of measurable abnormalities in people with CFS. These findings show that it is not a condition of attitude or perception, but of systemic biological dysfunction.

Studies consistently find problems with cellular energy metabolism — the body’s ability to produce ATP, the fuel that powers every cell. After exertion, people with CFS show prolonged energy depletion and reduced mitochondrial function, which explains the characteristic post-exertional crashes.

The immune system also shows distinct irregularities. Many patients have chronic activation of immune pathways, low-grade inflammation, and abnormal responses to viral or bacterial infections. This suggests an immune system that is both overactive and ineffective, trapped in a state of dysregulation.

Neurological and autonomic findings support this as well. Brain imaging studies show altered blood flow and connectivity in regions responsible for cognition, pain, and regulation. Many experience orthostatic intolerance — dizziness or faintness when standing — linked to dysfunction in the autonomic nervous system.

These biological markers do not point to a single cause but to a systemic breakdown in regulation across multiple systems. They make it clear that CFS is not about motivation or mindset. It’s an illness rooted in the body’s physiology, and understanding it as such is the first step toward compassion and effective care.

Why Psychological Approaches May Seem to Work for Some

Many people who say they “recovered from CFS” through therapy, mindset work, or positive thinking likely never had CFS to begin with. They were often dealing with burnout, depression, or anxiety-related fatigue — conditions that mimic some CFS symptoms but do not involve the same biological dysfunction.

When these people improve, their recovery is genuine, but it reflects a different condition. Mislabeling it as CFS confuses the public and reinforces the false belief that those with real, biological CFS simply need to think differently or try harder.

The Cultural Roots of the “Think Yourself Well” Idea

The persistence of this myth reveals much about our culture. Modern Western societies prize control, self-reliance, and positive thinking. The body is often treated like a machine — something to be managed and mastered through effort and discipline. When someone becomes chronically ill, it challenges those ideals.

Our culture also tends to moralize health. Productivity, optimism, and independence are seen as virtues; fatigue, limitation, and dependency are seen as weaknesses. From that worldview, the idea that illness could be “all in the mind” feels safer than facing the reality of human fragility.

The wellness industry amplifies this. Messages about “manifesting health,” “raising vibration,” or “healing through belief” offer a comforting illusion of control. But for biological illnesses like CFS, this illusion can become cruel. It places blame where it doesn’t belong and replaces scientific understanding with wishful thinking.

Seeing CFS through a cultural lens helps explain why so many people, even with good intentions, misinterpret it. The issue is not lack of compassion — it’s a collective misunderstanding of what it means to be embodied, limited, and human.

How It Feels to Be Told You Can Think Yourself Well

For those living with CFS, hearing “you can think yourself well” often feels like being unseen and dismissed. It implies that your suffering exists because you are not positive enough or haven’t found the right mental trick. It’s a subtle but devastating form of blame.

Most people with CFS have already tried everything — resting, pacing, meditating, visualizing, praying, journaling, therapy — and still remain ill. When improvement doesn’t come, they may turn the blame inward, wondering what’s wrong with them. This adds layers of shame and isolation to the physical burden they already carry.

What’s often meant as encouragement — “you can heal if you believe” — becomes an accusation: “you’re sick because you don’t believe enough.” Recognizing CFS as a biological condition restores dignity. It validates experience and lifts the moral burden that never belonged to patients in the first place.

What Actually Helps: Working with the Body’s Reality

CFS requires approaches that respect the body’s biological limits and rhythms. There are no quick fixes, but there are ways to live better within the condition — and sometimes to allow gradual improvement.

  • Pacing: Staying within one’s energy envelope to prevent post-exertional crashes.
  • Rest: Real, restorative rest that allows the body to recover.
  • Nutrition: Supporting metabolism and immune health through balanced, individualized diet.
  • Climate and environment: Some people find significant relief in climates that reduce physical strain — for instance, moderate temperatures or lower humidity.
  • Reducing sensory and stress load: The nervous system is hypersensitive in CFS; minimizing noise, light, and pressure can reduce symptoms.

These are physical strategies for a physical illness. They acknowledge the reality that the body, not the will, sets the pace of recovery.

The Role of Psychological Support

Psychological approaches still have an important — but different — place. Practices like mindfulness, therapy, visualization, and acceptance-based methods can help people relate more gently to themselves and their condition.

They can ease emotional suffering, help process loss and frustration, and bring moments of calm in a challenging life situation. They help with how we live with illness, not whether we have it.

But they cannot repair mitochondria, rebalance the immune system, or normalize cellular energy production. Expecting them to do so sets up a cruel double bind: if you don’t get better, it must be because you’re not doing it right.

Respecting the Body and Finding Peace

Believing that we can think our way out of CFS denies the body’s reality. It reflects a cultural discomfort with vulnerability and limitation. Living with CFS means honoring the body’s intelligence and constraints. It asks for humility — for listening instead of pushing, and cooperation instead of control.

Psychological tools are useful not because they fix the biology, but because they soften our relationship with it. They help cultivate compassion, patience, and self-kindness in a world that often values productivity over presence.

In Summary

CFS is a biological illness, not a mindset problem. Psychological tools can help us live with it, but they don’t cure it. Cultural beliefs about control and positivity make it hard for many to accept this reality, but acceptance is not defeat — it’s wisdom.

Healing begins when we stop fighting the body and start listening to it. That’s not “thinking yourself well.” It’s recognizing that well-being begins with honesty, respect, and compassion — for the body, for ourselves, and for the truth of what this illness really is.

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