This post is Part 1 of a series.
Researchers and clinicians are increasingly taking an integrative, psychoneuroimmunological approach to understanding myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID. This means looking at the ways that psychosocial and environmental factors interact with the nervous system, the immune system, the gut, and the endocrine system to give rise to ill health. This marks a departure from a traditional biomedical view of assuming that there is always a single pathophysiological cause for illness.
Given that major risk factors for long COVID and ME/CFS are psychosocial stress, chronic inflammation, and gut dysbiosis, it makes sense that interventions that target each of these areas may aid recovery. Research into immune therapies and gut probiotics for long COVID and ME/CFS is ongoing.
As a psychologist, I am particularly interested in how we can work with the brain and wider nervous system to support recovery. Emerging research from neuroscience and psychoneuroimmunology points to several ways we can use our psychology to affect our biology.
1. Develop a coherent understanding of what’s going on for you
Many people with ME/CFS and long COVID are told that nothing is wrong with them. Or that it is all in their mind. Or that there is something wrong, but that nothing can be done about it. Precisely none of this is based on science.
Instead, research points to these conditions representing a potentially reversible state of imbalance across multiple bodily systems. This suggests that there is something wrong: Your body is dysregulated. However, it is not broken.
The very process of making sense of how different psychosocial, environmental, and biological stressors, from bereavements to viruses, along with unsustainable ways of meeting the world, may have contributed to a state of neurobiological dysregulation, can itself contribute to greater regulation.
More than anything, the brain seeks to reduce uncertainty. This is because uncertainty makes the brain’s primary role extremely difficult: Neuroscience suggests that the brain uses predictions about the world and the body to keep the body in balance. According to this model, these very predictions influence our actual experience of what we feel in our bodies. As Andy Clark, author of The Experience Machine, writes:
“All those sources of information and evidence (raw bodily signals plus all the knowledge you are bringing to bear on the situation) mesh together, feeding influence back downward and impacting neuronal processing at all stages. In this way, even your bedrock bodily sensations may be altered by the way they are currently being framed by your own higher-level thoughts and ideas.”
One research study found that its participants—who were previously bed-bound with severe ME/CFS— benefited significantly from gaining a meaningful explanation for symptoms. Participants reported a shift away from a previously held view that the only hope for recovery could come from an as-yet-undiscovered biomedical cure. In turn, this view came to be “replaced by a more complex view of causality and illness and a new sense of self-agency.”
See my previous posts to see whether some of these ideas may help you build a more coherent understanding of what is happening in your body.
2. Change your relationship with your symptoms
Research demonstrates that physical symptoms can be neuroplastic: perpetuated by the brain, even in the absence of underlying structural damage. On the back of chronic stressors, the brain can become hypersensitive and may learn to continue to broadcast danger alarms around the body, even long after wounds have healed and infections have been cleared. All manner of symptoms—from pain, to fatigue, to brain fog, to dizziness, to digestive difficulties—can be triggered by a hypersensitive brain in connection with the immune system, gut-microbiome, and endocrine system.
When we are hit by persistent, unpleasant symptoms, it is natural to assume there is something seriously wrong with our body. When doctors are unable to explain these symptoms, our sense of frustration, confusion, and fear around these symptoms only intensifies. This is a completely valid response.
However, unfortunately, by responding to symptoms from a place of threat and aversion, we may send danger signals back to an already hypersensitive brain. Ironically, this serves to ramp up the body’s stress response, which can intensify the symptom even further. This is known as the symptom-fear cycle. It’s a bit like pouring petrol on a flame.
Fortunately, there are ways to gradually reverse the symptom-fear cycle—much like depriving the fire of its oxygen supply. One way of doing this is with ideas from Pain Reprocessing Therapy (PRT). We could alternatively describe PRT as “Neuroplastic Symptom Reprocessing Therapy,” since it can be applied to all sorts of persistent physical symptoms, besides pain. According to the developer of PRT, Alan Gordon:
“We need to teach your brain that the pain is not dangerous. This is the first goal of Pain Reprocessing Therapy. “Reprocessing” means changing the way your brain interprets the pain.”
You can replace the word pain with fatigue, migraine, nausea, or just about any other persistent symptom you are dealing with.
3. Gradually expose yourself to symptom triggers
Once you have done some work on the two approaches above, you are already beginning to create the conditions for the brain to update its predictions about the state of your body. Next, we can help update the brain’s predictions of the world outside your body.
Very often, on the back of accumulated stressors, the brain comes to assume that the world is a fundamentally dangerous place that is too much for us to handle. This makes sense; it is an adaptive response to overwhelming life events. However, we can use the brain’s malleability—its neuroplasticity—to allow these assumptions to be updated.
To do this, we want to create corrective experiences. This means doing things that feel safe enough not to completely overwhelm us, but that are sufficiently challenging to allow the brain to learn something new about what we can handle. When I was sick with ME/CFS and long COVID, I reached a place where even sedentary activities like reading, listening to a podcast, or watching TV were too much for my brain and body to tolerate. This was reinforced by my experience of having repeated flare-ups of symptoms every time I tried to do one of these activities.
However, by using what I had learned from PRT, I was able to gradually reintroduce these activities into my life. I started by reading a single page of a comic book—mainly pictures and simple text. The first few times I did so, I could tell my brain was freaking out, since I experienced more intense fatigue, headaches, and dizziness. It was as if my brain was trying to tell me: “What the hell are you doing? Don’t you know this is too much for us?! We need to stop this and rest.”
I didn’t simply ignore these symptoms and push through. However, nor did I take my brain’s bodily signals completely at face value and give up on being able to read. Instead, using techniques I had learned from PRT, like somatic tracking, I reassured my brain that I was OK; I was just reading a single page of a comic book, and that afterward I would lie down and rest again.
Over time, this gradual, self-compassionate approach allowed me to “unlock” previously overwhelming activities, much like levels on a video game. From reading books and watching films to eventually taking baby steps outside my front door, the world began to open up to me.