ME/CFS and long Covid: Your Brain May Be Trying to Protect You

In my third post of my blog over at Psychology Today, I explore how, following cumulative stresses, the brain may effectively shut the body down. See below for an excerpt:

Conditions like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and more recently, long COVID, are the sources of significant confusion and contention among researchers, clinicians, and patients. Sometimes persistent physical symptoms which cannot be attributed to a clear biological cause are labelled “medically unexplained”. But perhaps this language says more about the limits of the traditional biomedical model than it says about these conditions.

A different way of understanding health is emerging, as supported by pioneering research in the field of psychoneuroimmunology (just rolls off the tongue, I know). According to this view, many of the chronic health conditions which are now the leading causes of illness and disability globally, may be best understood by studying the interconnections between different bodily systems.

These systems include the brain and nervous system, the immune system, the gut microbiome and the endocrine (hormonal) system, along with psychological and environmental factors.

Seen from this “systems” perspective on health, it makes less sense to seek a single biological cause for chronic illnesses, and more sense to look for the ways in which multiple systems interact. Building on this field of research, I introduced the idea that ME/CFS and long COVID can be helpfully understood as a potentially reversible state of imbalance in the entire organism, commonly following chronic stress, in previous posts.

In this post, I’d like to go further and explore why it is that the body enters into a state of imbalance which comes to feel terrifyingly rigid and intractable. If you are living with ME/CFS and long COVID, you may well be asking: Why has my body gone into shutdown mode?

Decline and Fall

To answer this question, a useful place to start is to ask: How did I get here? According to research, the three most common triggering factors for people who go on to develop ME/CFS are infections, stress or major life events, and exposure to toxins. I would say that each of these factors can be described as different forms of stress, in the broadest sense of the word. Indeed, the “father of stress theory”, Hans Selye, described stress simply as a response in the body to any demand for change.

Even though many people appear to become unwell with persistent symptoms after a viral infection or another insult to the body, this often appears to act as the straw that breaks the camel’s back. People have very commonly already been navigating extended periods of wider stress and strain — from relationship difficulties, and caring responsibilities to unrecognised and poorly supported neurodivergence or mental health difficulties.

Megan O’Rourke’s words in a New Yorker essay describe this trajectory well:

I got sick the way Hemingway says you go broke: “gradually and then suddenly”.

Some researchers have described the period running up to someone developing ME/CFS and long COVID, as a “prodromal” phase. In this period, in response to cumulative stressors, the body moves gradually from a state of relative balance, or homeostasis and towards greater and greater imbalance, or dyshomeostasis.

Over time, the wear and tear of cumulative stresses, or “allostatic load”, may begin to be expressed in what psychologists Gordon Asmundson and Steven Taylor call “body noise”. These are physical sensations which may start quietly, but grow much louder over time.

Dysregulation in the nervous and endocrine (hormonal) systems can give rise to a wide range of sensations familiar to ME/CFS and long COVID sufferers, including fatigue, pain, headaches, heart palpitations, altered breathing, increased sensitivity to light and sound, instability in body temperature, sweating, digestive difficulties, sleep difficulties, anxiety, brain fog and orthostatic intolerance (when symptoms become worse while standing upright).

A dysregulated immune system can give rise to what is sometimes called the “sickness response”, including fatigue, low mood, anxiety, reduced appetite, increased pain sensitivity, reduced interest in socialising, tender glands and a sore throat.

Some people with ME/CFS and long COVID may find themselves looking back at the less intense physical sensations they muddled through in the period before becoming ill as “early warning signs” that their stressful life circumstances were not sustainable. It is almost as if these “whispers” from the body go unheeded, and so must be amplified into the shouts and screams of more disabling symptoms in order to finally be heard.

Head over to Psychology Today to read the full post.