When your body pulls the plug

You wake up in the morning. The alarm has rung. You lie there. And your body is no longer a body, it is lead. You know that you should get up. You want to. But between wanting and being able, someone has built a wall that you cannot see.

Before I start, I have to tell you something

Some time ago I had a heart muscle inflammation. Viral myocarditis. The acute phase was over, the troponin values fell, the ECG calmed down. I was, my colleagues said, on a good path.

But I was not.

Fatigue is not tiredness. And that is the most important sentence.

Tiredness is the signal to go to bed. You sleep, you wake up, you are recovered. That has been working for millions of years.

Fatigue is something else. Fatigue is exhaustion that does not resolve through sleep. You sleep ten hours and get up as if you had slept two. You take a small walk and lie flat for three days afterwards. You have a brief phone conversation and feel brain-dead afterwards.

This last phenomenon has its own name: Post-Exertional Malaise, abbreviated PEM. Worsening of state after exertion. And it is not a side issue, it is the heart of the ME/CFS diagnosis. The Institute of Medicine published a major work in 2015 in which PEM was defined as the core symptom that distinguishes ME/CFS from other states of exhaustion.

A second major shift: in 2021 the British guideline body NICE fundamentally revised its recommendations on ME/CFS. Graded exercise therapy, the standard for decades, was removed from the guideline. The reasoning: in people with real PEM, "a little more movement every day" can massively worsen the condition. It is not about deconditioning. It is not about "pulling yourself together". It is about a body that responds pathologically to exertion.

The spectrum: ME/CFS, Long COVID, Post-Vac, fibromyalgia

I considered for a long time whether to restrict this article strictly to ME/CFS. I deliberately decided against it. Because in the practice life does not run by drawer labels. Because the mechanisms that stand behind it overlap massively. And because people who have been exhausted for months should not have to hear from us clinicians another "you unfortunately do not fall into our category".

So: a soft spectrum, no hard borders.

The mistake I see again and again: "It's the EBV"

A patient comes into the practice. Two years of fatigue. At some point, someone did an EBV antibody profile, the EA-IgG is positive, the report says: "reactivation".

From this moment the virus is hunted. Antivirals. Antiviral protocols. Expensive panels. Months pass. The virus becomes a little less, then more again. The fatigue stays.

I have to be honest here: in many cases this virus hunt is futile. Not because the reactivation is not real. But because it is symptom, not cause.

What really exhausts the immune system

If we are not fighting against viruses, but against the reasons why the immune system can no longer keep them in check, what reasons are these?

This is where it gets interesting. And this is where what I do in my practice begins: we sit down, we go through the story, and we look for the silent loads that have pushed the system under water over the years.

The three systems: immune, nervous, metabolic

Medicine made a big mistake in the 20th century: it put the systems of the body into separate departments. As if they were separate houses with separate roofs.

They are not. They are three rooms in the same house, connected by messengers, nerves, blood. The discipline that takes this seriously is called psycho-neuro-endocrino-immunology, abbreviated PNEI or, in the school of Leo Pruimboom, KPNI for clinical PNEI. Francesco Bottaccioli has built a whole school in Italy that works according to this principle.

When I look at fatigue patients in my practice, I always think in three big systems. Three actors on the same stage, who constantly talk to each other. The hormone system is not a fourth system next to them, it is part of the metabolic system, woven into both others.

What is decisive is the interplay. Each of these systems can be the trigger which the others then amplify. There is no single right direction. There is only the cycle.

Why your psyche is on the drip of your mitochondria

The concept is called sickness behavior. And it is one of the most important concepts in modern medicine, far too rarely taught.

Robert Dantzer and Keith Kelley, in a series of works culminating in a landmark publication in Nature Reviews Neuroscience in 2008, have shown what happens when inflammatory messengers, the cytokines, signal from the body into the brain. The brain responds with a hard-wired program: social withdrawal, loss of appetite, tiredness, anhedonia, pain sensitivity.

That makes evolutionary sense. When you are sick, you should withdraw. Save energy. Not infect others. Rest.

The problem: when the cytokine load is not acute but chronic, this program stays on. Months. Years. And from the outside this looks exactly like: "She has become depressed." "He has changed, he has gone dull." "She no longer talks."

Cell Danger Response: when the cell calls the emergency

One of the most important concepts of the past years comes from Robert Naviaux at the University of California San Diego. In 2014 he published a paper that I recommend to anyone who deals with chronic illness. The term in it: Cell Danger Response, abbreviated CDR.

The idea is at once simple and radical. When a cell experiences a threat, whether infection, toxin, trauma, hypoxia or emotional shock, its mitochondria switch into a survival mode. They turn down energy production. They close the hatches. They seal themselves off, until the danger has passed.

That is evolutionarily clever. A cell that opens itself while viruses or toxins circulate outside is a dead cell. The withdrawal saves life.

The problem: when the threat does not pass, or when the cell does not perceive it as past, the cell stays stuck in this mode. Years. Decades. Naviaux calls this a persistent dauer-like state, in reference to the survival program of certain worms and insects that fall into a kind of hibernation under extreme environmental conditions.

For me this concept changes the view of fatigue profoundly. Fatigue is then no longer a deficit of energy. It is an active protective response. A body that says: "I am dialing the energy down because I think it is necessary."

The therapeutic implication: you do not just pump such a body full of energy. You ask why it feels threatened. And you unload the danger signals, until it can leave the emergency mode.

And what if trauma is part of the picture? The honest answer

Here I have to tell you something differentiated, something that does not fit into one drawer or the other. In many professional circles and also in the patient community there are two camps. One side says fatigue is purely physical, trauma has nothing to do with it. The other says behind every chronic fatigue lies an unprocessed trauma. In my experience, both camps miss the mark.

What the research shows: adverse childhood experiences, that is, early traumas in childhood, raise the risk for many chronic illnesses, including fatigue syndromes. Borsini and colleagues published in 2013 in Psychological Medicine a large review that gathered exactly this connection from twenty years of research. But: a more recent paper by Clark and colleagues from 2018 showed that a large part of this elevated risk can be explained by simultaneously present depression. In patients without depression, the connection to trauma was much weaker than previously assumed.

That means for me: trauma can be a factor. Trauma does not have to be the factor. And to say flatly "your fatigue comes from your childhood" is just as wrong as flatly to say "this has nothing to do with your psyche".

For the practice this means: I ask everyone who comes to me with fatigue about their biography. Not to imply anything. But to see whether the Cell Danger Response was possibly triggered by a long, early, never-resolved threat. And I look at whether under the exhaustion there might also be a psychological theme that should be treated, whether in parallel or primarily.

Why I proceed differently with each person

This is the point at which I always say again: fatigue is individual. There is no such thing as the fatigue. There are hundreds of fatigue stories, and in none of them are the three systems disturbed in the same way.

In one patient I see that the nervous system is in the foreground. She was never sick, but in the past years she has experienced extreme blows of fate, lives in constant alarm, the vagus is out of beat. In another patient I see: the mitochondria are exhausted, his metabolism shows classical mold burden, the nervous system is secondarily affected. In a third person the immune system is the main actor, after a severe infection it has not calmed down.

That is why in the practice it is not enough to draw blood once and then say "now we treat fatigue". I need a picture of which of the three systems in this person, at this place in their life, is shouting the loudest. Only then do I know where to start.

Concretely, I take two things on board in the first treatment: I analyze the three systems thoroughly, and I check whether there is a trauma-related component.

Only then do I have a map. Only then can I say: in your case, dear patient, the main actor is the nervous system, we start with vagus work and pacing. Or: in your case the metabolism is clearly at the center, we unload the mitochondria first.

What conventional medicine must rule out before anyone talks about fatigue

Before we get to the holistic model, an important point: sometimes the cause of the exhaustion is mundane. And mundane is great luck, because mundane is often treatable. The NICE guideline 2021 lists a minimum diagnostic that every doctor should run before the diagnosis of ME/CFS:

• Thyroid: TSH, free T3, free T4, antibodies TPO and TRAK
• Iron: ferritin, transferrin saturation (ferritin under 50 with exhaustion is relevant, even if the lab says "within normal range")
• Vitamin D, vitamin B12, folate
• Blood count, liver, kidney, electrolytes, CRP, blood sugar, HbA1c
• Coeliac serology: IgA-tTG
• Creatine kinase in case of muscle symptoms
• Sleep apnea clinically clarified, in case of snoring or daytime sleepiness

That is the minimum. If these values have not been looked at and you have been asking for months why you are exhausted, have them looked at. Before you do anything expensive.

My model: holistic, stepped, without health promises

Now the point at which many articles slip into health promises. I will not do that here. For ME/CFS there is no licensed causal therapy. For Long COVID there is none. For Post-Vac there is none. Nobody who is serious promises you healing.

But, and this is the point that touches me anew every day in practice, there are directions. There are levers. There are things that reduce the load. And in a system that has fallen out of balance, seemingly small changes can have large effects. That is the experience I was allowed to make and that I make again every single time.

And here I come to a word that I would happily exchange for all others: mentoring. What people with fatigue receive from me is not a list. It is a companionship. I walk through the weeks and months with them. We adjust, we wait, we observe what the individual steps bring about, and we correct together. Pacing is not a protocol that you print out. Pacing is a conversation that develops over time.

My model works in stages. Never everything at once. Never too much. Never without respect for PEM.

What touches me anew every day

I see in my practice people who have been labeled "therapy-resistant" for years. People who were told to "pull themselves together". People who have themselves started to believe they are psychologically unstable, because nobody listened to them.

And then we sit down. We look at the whole story, not only the last six months. We look for the silent loads. We do a few things differently. And sometimes, not always, but often enough that it touches me every time, something happens.

The body finds energy. The inner light comes back. And eventually, months later, this person laughs again. Properly. Out loud. From the belly. And in that moment I know why I chose this profession.

If you recognize yourself

This article is not a substitute for a medical consultation. It is an invitation to take your exhaustion more seriously than your environment perhaps does, and at the same time to be more patient with yourself than you are.

If you have been exhausted for months and nobody really hears you, then find someone who listens. That is the first step. In my practice in Berlin-Kreuzberg I always take more time for new fatigue patients than a regular consultation would ever allow. Because your story needs time. And because I myself know what it is like to be on the patient side for the first time.