In Search of a Coherent Understanding 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.

Each person living with ME/CFS or long covid experiences their own fluctuating constellation of persistent symptoms going far beyond physical fatigue, and also commonly including brain fog, migraines, sensory overwhelm, pain, nausea, shortness of breath and digestion issues, among numerous others. While these two conditions are not identical, 58% of participants with long covid in one study met criteria for a diagnosis of ME/CFS.

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.

The Need for a Sense of Coherence

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.

The state of knowledge on ME/CFS and long covid is far from conclusive, not to mention fiercely contested. However, I would argue that the current research base lends itself to more coherent and therefore, hopeful, explanations of ME/CFS and long covid than is generally acknowledged.

An Imbalance in the Entire Organism

While perspectives are polarised, it is hopefully not greatly controversial to suggest that ME/CFS and long covid are multi-systemic, multifactorial chronic illnesses. Multi-systemic means that these conditions involve multiple different bodily systems — including the brain and nervous system, the immune system, the endocrine system, the digestive system and the metabolic system. Meanwhile, multifactorial means that while there is no diagnostic biomarker suggestive of a single cause for these conditions, there are multiple risk factors associated with them.

Researchers on ME/CFS and long covid have suggested several potential pathophysiological mechanisms for the conditions, including the persistence of viruses in the body, autoimmune processes, the reactivation of dormant viruses, chronic inflammation, and mitochondrial dysfunction. While various physiological abnormalities have been found to be linked with these conditions, these associations are non-specific and are also implicated in many other health issues.

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 Systems View of Illness

In an interview, Norman Doidge, author of The Brain’s Way of Healing, similarly pointed to the limits of Western medicine’s emphasis on reductionism:

“…meaning to tear things down to small parts. We analyse things. Our lab tests are all about analysis of microscopic things …And then the kinds of things where we make huge mistakes are where everything is related …things that people said ‘oh well, that’s all just in their head, it couldn’t be real’ — like chronic fatigue syndrome …We’re weakest in treating chronic diseases, which is why they are still chronic. So there is a radical need for a correction between the holistic side and the materialist reductionist side. And I want them both to succeed. But neither can succeed alone.”

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.

Monty Lyman, author of The Immune Mind, suggests that the brain, immune system, and the gut are so closely integrated in their attempts to defend us from threats both large (predators) and small (pathogens), that it makes sense to conceive of them as one “supersystem”. Meanwhile, given the leading risk factors identified in long covid and ME/CFS studies: immune disruption, psychosocial stress, and gut dysbiosis —the idea of these illnesses being driven by an imbalance across this supersystem makes eminent sense.

A New Hope

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. I look forward to going deeper into this fascinating area with you in future posts.