Long Covid – more to offer than coping strategies?

I developed symptoms of long covid and ME/CFS in 2020, during my doctoral training. Rather than listen to my body, I numbed out and pushed through, determined to qualify as a clinical psychologist after dedicating several years of my life to that goal. By the time I qualified, after a particularly punishing case of the Omicron variant, I went from pushing, crashing and semi-functioning, to my body completely shutting down. 

I developed intense symptoms of orthostatic tolerance, meaning I couldn't walk, stand up or sit up for long. I also experienced severe migraines, insomnia, nausea, fatigue, brain fog, temperature dysregulation, and sensory overwhelm. I couldn't read, watch TV, or do anything else to distract myself from these debilitating symptoms. I had to stop work for a year, and was housebound for several months. 

In the face of my symptoms, and what I saw as an inability of mainstream medicine to offer a coherent explanation for what was happening to my body, I was willing to try anything. Long covid is a jigsaw puzzle, and there were many different pieces to my recovery, including: meditation, extremely gentle yoga, very graded exposure to previously unmanageable activities, changing my diet, taking nutritional supplements, craniosacral therapy, a course of Dynamic Interpersonal Therapy on the NHS, expressive writing, reconnecting with suppressed emotions and beginning to unravel various unsustainable ways I had learned to meet the world. However, I experienced a quantum leap in my recovery when I discovered the concept that the brain can be responsible for perpetuating persistent physical symptoms. I came across ideas from research on neuroplastic pain, and learned that others were applying them to long covid and ME/CFS – more on this later.

After recovering substantially, I started work as a qualified clinical psychologist in an NHS long covid service. I enjoyed working with colleagues across disciplines and offering empathy and hope to people trying to make sense of the same kinds of symptoms I had myself mostly recovered from. However, after the best part of a year, in a sadly myopic move, the service cut the jobs of the team's senior clinicians and I found myself the only qualified psychologist running services for people with long covid across two NHS trusts. 

I did my best, but found myself burning out and experienced a significant relapse of symptoms. I learned that in order to create a lasting recovery, I needed to build a life that could sustain one. With a heavy heart, I eventually left my NHS job and started my own practice dedicated to supporting people living with long covid, ME/CFS and related conditions. 

So, that's me. My personal experience of long covid has inevitably shaped my views of the condition. And I was extremely pleased to see contributions from colleagues with clinical and lived experience of long covid in The Psychologist. 

Those Dr Aspa Paltoglou spoke with were absolutely right to caution against the 'psychologising' of long covid. Because research has not yet fully got to grips with conditions like long covid and ME/CFS, some have cast doubt on the reality of the physical symptoms sufferers experience. People living with ME/CFS have historically been gaslit and stigmatised. This is plainly ignorant and deeply distressing for sufferers.

However, we must also be careful not to lurch from one extreme to the other…

A blurred distinction

Speaking with Dr Aspa Paltoglou, Dr David Joffe, a physician, researcher and vice-chair of the World Health Network Long Covid Working Group, described long covid as a 'direct, organic, neurological condition', and claimed that 'the vast majority of long covid patients will never achieve anything close to their prior function'. I am concerned that if taken at face value, notions such as these may serve to prematurely foreclose the development of potentially valuable research and clinical interventions for people living with long covid.

Whereas some researchers agree with Dr Joffe's assumptions, others do not. Some researchers suggest that the available evidence points to long covid being a potentially reversible functional somatic symptom disorder. On either side of this debate, there is a tacit acceptance of a diagnostic paradigm of zero sum causality: syndromes must be classified as either functional or organic. 'Organic' health difficulties are posited to be explainable by clear physical causes which can be identified by unambiguous medical tests, whereas 'functional' difficulties ostensibly can not.

Yet this functional-organic distinction has historically been heavily criticised and shown to be inconsistently defined and used in clinical practice. As long as 85 years ago, the author of a seminal neurology textbook (Wilson, 1940) wrote that the dichotomy between organic and functional health problems 'is transparently false and has been abandoned long since by all contemplative minds'. As psychologists, with a clinical practice based on biopsychosocial formulation, we know better than to arbitrarily reduce or decontextualise our patients' struggles. We have a duty challenge the strange hierarchy of health difficulties that the organic/functional distinction can set up in western, mainstream medicine.

As neurologist Suzanne O'Sullivan states: 'Every medical problem is a combination of the biological, the psychological and the social. It is only the weighting of each that changes'. This should surely not be a controversial statement; we do our patients a disservice if we seek to make sense of long covid in an artificially constructed biomedical silo, divorced from wider psychological and sociological influences.

Illness as a process

Let me be absolutely clear: acknowledging the potential role of psychosocial stressors is not at all to deny the biological reality of conditions like long covid. The emerging research is suggestive of several possible physiological mechanisms of long covid. As Emma Barratt summarised in the last issue, these possible drivers include viral persistence, autoimmunity, reactivation of dormant viruses such as Epstein Barr, and chronic inflammation. 

However, with long covid sufferers presenting with virtually infinite constellations of 203 possible symptoms, across multiple bodily systems, the notion that it is possible to isolate a single biological cause, explanation or treatment for this condition is up for debate. Moreover, many symptoms associated with long covid are implicated in the relationship between the brain and the body: fatigue, brain fog, heart palpitations, dizziness, anxiety, and low mood (Lyman, 2024).

The million dollar question, as formulated by psychiatrist and researcher Dr Monty Lyman, in his 2024 British Psychological Society Book Award winning The Immune Mind, is this: 'We understand how organ damage resulting from an acute infection that's severe enough to require hospitalisation and the use of a ventilator can linger on in the body. But how can a virus that causes, in most people, a mild and transient infection bring about long-term brain changes?' 

Lyman's own response is that, in addition to understanding the possible physiological mechanisms of long covid, it also makes sense to consider what wider factors may create the conditions for such tendencies. He notes that dormant viruses like Epstein Barr can be reactivated not only by repeated threats to the immune system in the form of infections or immunodeficiency, but also by psychosocial stress. Meanwhile, a study conducted by the team of renowned Yale immunologist, Professor Akiko Iwasaki, found that the strongest predictive biomarker for long covid was not immunological, but a low baseline level of cortisol – which has itself been associated with chronic stress.

In The Immune Mind, Lyman explores the latest science on the fascinating interactions between the brain, the gut microbiome and the immune system. He concludes these systems are so irreducibly interconnected, that it makes sense to regard them as a unified 'defence system'. Known risk factors for long covid, including immune disruption, psychosocial stress, and gut dysbiosis, arguably represent an imbalance in the body's defence system. It stands to reason that interventions which target each of these areas may be beneficial.

Can psychological therapies help with physical symptoms?

Contributors to The Psychologist were right to observe that psychologists are well placed to support people with the emotional impacts of living with long covid — with common experiences of trauma, anger, grief and despair. However, psychologists can arguably offer significantly more than coping strategies. 

Crucially, of course, psychological interventions should be offered in multi-disciplinary teams alongside medical interventions and those of other health disciplines. Indeed, just as interventions in the form of immune-targeted pharmaceutical therapies and microbiome-targeted nutritional therapies are likely to be valuable, so too are psychological therapies which harness the power of the brain and the wider nervous system. Dr Lyman argues that a 'well-targeted psychological therapy with a clued-up, understanding clinician is, ultimately, a powerful biological treatment'.

One study led by Associate Professor of Medicine at Harvard Medical School, Dr Michael Donnino, tested the use of Psychophysiologic Relief Therapy for people living with long covid. The intervention included education on the mind-body connection, practices designed to help participants desensitise their brain's response to symptom triggers, emotional expression strategies and Mindfulness Based Stress Reduction (MBSR). The results included very significant improvements in symptoms among participants, including median reductions in fatigue of 44 per cent, brain fog of 67 per cent and pain of 52 per cent. Whereas 57 per cent of participants felt exercise made their symptoms worse at the beginning of the study, only 9 per cent did four weeks into the 13-week study. 

Now, I know what you may be thinking. The study had a small sample size (23), and was not randomised. However, based in part on my own personal experience, I am reminded of what Normal Doidge (author of The Brain's Way of Healing) said in a podcast: 'If you have an intervention that has no side effects and you have a patient who has been told by mainstream practitioners that they will not get better and you have something that you see as helpful – you could tell them we can wait for 15 years for all the randomised controlled trials to be completed, or perhaps this might be worth a try'. 

It's also worth noting that there is robust evidence for the role of psychological therapies in improving persistent physical symptoms. There are now well-established models of chronic pain being in many cases perpetuated by neural pathways in the brain. There are well-evidenced psychophysiologic therapies based on this science of 'nociplastic' or 'neuroplastic' pain, including Pain Reprocessing Therapy (PRT) and Emotional Awareness and Expression Therapy (EAET). A randomised controlled trial of PRT for people living with chronic back pain, most of whom had experienced pain for a decade, led to the elimination of pain in two thirds of participants. Meanwhile, trials of EAET have shown that it leads to a reduction in pain severity of those living with chronic pain, including those diagnosed with fibromyalgia – a condition which has significant overlap with ME/CFS and long covid. EAET has also been found to be more effective than CBT among the populations it has been studied with. 

Remaining curious

I came across ideas from PRT and EAET when I was ill, and learned that others were applying these ideas to long covid and ME/CFS. Doing so for me was a major breakthrough in my recovery. Dr Paul Garner, Epidemiologist and Emeritus Professor at Liverpool School of Tropical Medicine, has written about his recovery from long covid in the British Medical Journal, which he attributed to retraining his brain's reactions to symptoms. Social media also abounds with similar recovery stories. 

Of course, individual recovery stories do not constitute generalisable evidence. However, there is a growing body of research which offers hypothetical models of persistent symptoms in long covid which draw on a fascinating emergent field of neuroscience called predictive processing. In short, it is posited that following events that are stressful or traumatic to the mind and body – from adverse childhood experiences, to medical trauma, to bacterial or viral infections – the brain begins to 'lose confidence' in the body's ability to respond to future challenges. Particularly after multiple, cumulative stressors, the brain is hypothesised to default to more rigidly producing symptoms such as fatigue, brain fog and pain. Such symptoms are adaptive in times of short-term threat or sickness, since they prompt us to rest and recover. However, when this feedback loop becomes persistent, the result is a vicious cycle of deeply unpleasant symptoms. When sufferers are unable to receive a coherent explanation and treatment for their symptoms by healthcare professionals, the obvious response is more stress. This only reinforces the brain's threat response, and thus creates further conditions for symptoms to be amplified.

Against the backdrop of such research, we glimpse the possibility that Dr Joffe's prediction that 'the vast majority of long covid patients will never achieve anything close to their prior function' runs the risk of becoming self-fulfilling. The nocebo effect (Bernestein et al., 2024), which accounts for one in four people experiencing side effects from taking a sugar pill when they are primed to expect this possibility, may also be at play when people receive messages that they are suffering from an irreversible 'organic' disease from which they cannot recover.

Psychologists are particularly well equipped to support people dealing with vicious cycles which are at least partly perpetuated by the 'tricky' nature of our brains (Gilbert, 2013). The growing body of research described above offers psychologists the possibility of supporting people to begin to create the conditions for the brain and nervous system to respond to symptoms and stressors from a place of coherence and growing safety. 

None of this negates the value of biomedical research and intervention. If anything, it reinforces the crucial importance of greater multidisciplinary collaboration, not to mention the ongoing imperative of prevention. But while I can of course understand David Joffe's plea to not 'psychologise' long covid, I still firmly believe that we may be among the best-placed clinicians to support people, not merely to manage their symptoms, but to recover from them.

Dr Jake Hollis

Clinical Psychologist

The Fatigue Psychologist

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