Long Covid is widely experienced and accepted as a medical condition. In this extract from The Age of Diagnosis, Suzanne O’Sullivan argues many cases have a psychosomatic basis. You can read more about O’Sullivan’s work in Part I of The age of diagnosis.
Long Covid behaves just as psychosomatic illnesses do, with a flitting myriad of symptoms that defy anatomical explanation. Because there is no defining pathology in any single organ, it involves different bodily systems in different combinations in different people. Non-hospitalised long Covid patients often had a wider range of more severe symptoms than those recovering from hospitalisation. It consistently contradicts biology. For example, sufferers who are the most short of breath also have the most normal lung function tests and medical investigations do not explain and are often at odds with the symptoms.
Long Covid as a psychosomatic disorder could have arisen through a variety of mechanisms. The nocebo effect is a potent generator of physical symptoms through the power of belief. Excess attention paid to the body during the pandemic changed how people experienced and used their body. Searching the body for evidence of infection may then have brought existing symptoms that might previously have been dismissed to the fore. Adrenalin, a change in diet and/or alcohol intake, and different activity levels negatively impacted general health and increased bodily white noise.
Predictive coding – the means by which our brains process bodily sensations through the framework of our expectations – used our vivid internal models of the havoc Covid-19 could wreak and flooded our bodies with false signals. Some people’s expectation of long-term illness may have come to outweigh the reality of their healthy bodies as horror stories bore down on them from all sides. Long Covid spread through fear as alarming news and misinformation flooded mainstream and social media. Rather than being a single illness, long Covid was the array of consequences one can expect when people are caught in a global pandemic and have nowhere to turn.
Attempts to explain all long Covid as a consequence of viral pathology have so far fallen short. The presence of small clots in the blood, known as “microclots”, are often mooted as a cause and a potential route to treatment. That theory has been investigated by a Cochrane review, a systematic assessment of all available research results on a particular topic, and no evidence was found to support this. Studies found that microclots are equally found in other diseases and in healthy people.
Psychosomatic disorders produce real physical symptoms.
Pathology that potentially explains persistent symptoms has been found in hospitalised patients who had severe infections. The virus really took a physical toll on those hit hardest and that has been reflected in the inflammation and ongoing infection seen in some of those who were hospitalised and in some of those who, sadly, died. But these findings are often assumed to apply to all the other long Covid groups equally and are used to argue against a psychosomatic cause – when actually there is no evidence to say that they should apply to all groups.
Normal tests with no evidence for infection or inflammation are the consistent finding in the group in whom psychosomatic illness makes best clinical sense. The most defining characteristic of those with long Covid after a mild or self-diagnosed infection is the lack of association between symptoms and tests and the lack of evidence for infection and inflammation. One study showed a greater correlation between psychiatric symptoms and disordered breathing than with lung pathology. It is also worth noting that raised inflammatory markers are seen in association with stress and mental health conditions; so, if they did exist, they could also be explained in ways other than as a consequence of infection.
In fact, the rush to explain long Covid saw patients who probably had multiple different problems amassed as a group, which has made the likelihood of finding a commonality between them very unlikely. Many early studies that showed a wide range of persistent symptoms after an acute Covid-19 infection were of low quality and did not even include a control group. Later studies showed just as many symptoms in control subjects as were seen in people with long Covid. This suggests that the symptoms of long Covid were not exclusive to those infected and were more likely to be caused by some aspect of the social restrictions in the pandemic rather than by the virus itself.
Long Covid was the array of consequences one can expect from a global pandemic.
It is very hard to talk openly about psychological mechanisms as being responsible for either of these conditions. I know that conversation will upset people, partly because it will be misunderstood. Psychosomatic disorders are often confused with malingering when the two are completely unrelated. Malingering is deliberately pretending to be ill. But psychosomatic disorders are disabling, unconsciously generated medical disorders. Someone diagnosed with a psychosomatic disorder may feel they are being dismissed by the medical establishment, as, in the popular imagination, psychosomatic disorders are seen as “lesser” than other diseases, which means the diagnosis is taken to diminish the person’s level of suffering. Many people still assume that they are imagined or purposeful.
None of that is true. Psychosomatic disorders produce real physical symptoms. Like palpitations that occur with a sudden fright, psychosomatic symptoms are genuinely experienced but are not due to a disease. A psychosomatic mechanism does not mean a person isn’t disabled, only that the problem has arisen through a complex mind-body interaction rather than being due to tissue pathology caused by a virus. I have spent much of my career making people aware of the seriousness of psychosomatic conditions. I can assure you the pain or fatigue of a psychosomatic condition can be as debilitating as that of cancer and this explanation should not be seen to diminish the suffering of those with this form of long Covid.
It is precisely because it is such a difficult conversation that a psychosomatic explanation for people with long Covid has not featured nearly enough in public discourse. Even doctors and scientists who strongly suspect long Covid and CLD (chronic Lyme disease) are psychosomatic don’t necessarily raise it. That fear has stymied research progress into both.
The Age of Diagnosis: Sickness, Health and Why Medicine Has Gone Too Far, by Suzanne O’Sullivan (Hachette, $39.99), is published on March 25.
