In Search of a Coherent Understanding of ME/CFS and Long Covid (Psychology Today blog post)

I have recently started a new blog over at Psychology Today aimed to help people better make sense of ME/CFS and long covid.

In my first post, I offer some thoughts on how important it is to have a coherent understanding of your health condition in order to make progress in recovery.

Here are the key points I make in the blog post:

1) Modern medicine routinely fails to make sense of ME/CFS and long covid.

We expect modern medicine to be able to make sense of our health difficulties. What then, when it fails to do so? This is the reality for many millions of people globally living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long covid.

People affected by these often severely life-limiting conditions are typically unable to receive an explanation for their illness from general practitioners and specialists alike. Biomedical tests to find an organic cause for symptoms typically come back normal, much to the confusion of doctor and patient alike.

2) This incoherence, along with wider stigma, leaves sufferers frustrated and confused.

This lack of explanation adds insult to injury for sufferers, given that having a strong “sense of coherence” over your life and its challenges is itself associated with better health outcomes. The concept, sense of coherence, developed by medical sociologist Aaron Antonovsky, breaks down into an individual’s ability to understand, manage, and create meaning from their life, including its challenges. Clearly, being able to manage and even recover from ME/CFS and long covid is going to depend on first having a clear understanding of what the illnesses are. Meanwhile, being able to derive meaning from the whole experience seems a tall order without either understanding or a recovery plan in place.

Add common experiences of stigma and disbelief into this already overwhelming mix, and the result for many sufferers is frustration, alienation, and despair. I repeatedly felt these emotions when I had ME/CFS and long covid, and it is also what I regularly see in the people who consult me desperately looking for support.

3) A systems view of illness encourages us to consider how states of imbalance arise across bodily systems.

Evidently, these conditions are complex, and any attempt to offer a coherent explanation based on current evidence is going to be partial and will be updated over time. However, a useful starting point might be to borrow from Gabor Maté’s The Myth of Normal, in which the physician conceives of illness in general as a dynamic process, rather than an irreversible end-point. What is more, Maté encourages us to consider the value of viewing illness as a process that signifies an imbalance in the entire organism, rather than purely a:

“manifestation of molecules, cells, or organs invaded or denatured by pathology …What if we applied the findings of Western research and medical science in a systems framework, seeking all the connections and conditions that contribute to illness and health?”

A more integrative, systems view of illness encourages us to consider how states of imbalance may arise across interacting bodily systems, rather than searching for a single cause in isolated biological substrata. The notion that ME/CFS and long covid may be best understood as manifestations of an imbalance in the entire organism speaks directly to their multi-systemic, multi-factorial nature.

4) Viewing symptoms as signs of being dysregulated, not broken, can open the way for the possibility of recovery.

Clearly, a systems framework for understanding ME/CFS and long covid gives rise to many further pressing questions. Zooming out of the physiological mechanisms at play in ME/CFS and long covid, we can also do well to consider what wider biological, psychological, and environmental factors give rise to this state of imbalance in the entire organism.

The prospect of making sense of your supposedly “medically unexplained” symptoms as a potentially reversible state of dysregulation and dyshomeostasis across multiple bodily systems lends itself to possibility, hope, and agency. This understanding offers the possibility of creating a new, healthier set of conditions which may foster greater regulation and homeostasis — and therefore recovery. This is how I make sense of my own recovery from ME/CFS and long covid.

Head over to Psychology Today to read the full post.