Between us, we bring two perspectives to persistent illness: personal experience of long COVID, and clinical and research experience in chronic illness rehabilitation.
Both have taught us the same thing: when symptoms are real, disabling and difficult to explain, patients need more than reassurance that tests are normal. They need to be believed, assessed carefully and offered ways to make sense of what is happening in their bodies.
One of us, Sarahjane, knows this personally. Before developing long COVID, she was fit and healthy. As a professor of health and physical activity, her life was dedicated to helping people understand and improve their health.
Then she became ill.
For two years, she could barely function. At her worst, she could not stand for more than a few minutes. Everyday life shrank around severe and frightening symptoms. Like many people living with long COVID, myalgic encephalomyelitis/chronic fatigue syndrome, often shortened to ME/CFS, chronic pain and other persistent conditions, she searched for answers. There were scans, tests and consultations. Again and again, results came back clear. Yet the symptoms remained.
That mismatch can be devastating. When the body feels as if it is screaming for help, normal test results can feel less like reassurance and more like abandonment. The more medicine struggles to explain symptoms, the more patients may fear being disbelieved.
Nervous system education
For decades, people with poorly understood conditions have been told their symptoms are “all in their head”. That phrase has done enormous harm. It has been used to dismiss pain, fatigue, dizziness, breathlessness, weakness, sensory sensitivity and cognitive symptoms that are real and disabling.
But modern science asks us to think more carefully. The nervous system is part of the body. The brain is a physical organ. It interacts with immunity, hormones, breathing, cardiovascular control, pain processing and the stress response. When we talk about the nervous system, we are talking about biology.
This is relevant to long COVID because some people develop symptoms involving the autonomic nervous system. This regulates functions such as heart rate, blood pressure, breathing, digestion and sweating. When it is not working properly, people can experience dizziness, palpitations, breathlessness, faintness, exercise intolerance and brain fog.
Long COVID and ME/CFS are complex and varied conditions. Some people may have organ damage, autonomic dysfunction, immune changes or post-exertional malaise, when symptoms get worse after even minimal physical or mental activity. Other causes and processes in the body are still being investigated. Medical assessment remains essential when symptoms are new, changing or severe.
Within that wider picture, nervous system regulation may be one part of recovery for some people. After illness, injury or prolonged physical stress, the systems that detect threat and protect us can become more sensitive. The body may remain on high alert after the original danger has passed or reduced.
One way to understand this is to imagine a home alarm system. A well-calibrated alarm responds to a real intruder. A hypersensitive alarm goes off when wind moves a branch against the window. The sound is real. The distress is real. The problem is the threshold.
For Sarahjane, this helped. It did not make her symptoms less real. It made them less frightening. Instead of fighting each symptom in isolation, she began to understand how her body’s protective systems might be contributing to the overall pattern. She could work with her body’s limits rather than pushing against them.
This understanding is central to Second Arrow: Transforming Long COVID, a programme we developed to support people living with persistent symptoms. In a small early study, participants learned how the brain and nervous system can contribute to ongoing symptoms, and were given practical tools to manage daily life with long COVID.
Participants described the strain of living with symptoms they could not explain and that medicine had not yet accounted for. They also described the relief of being offered a framework that took their symptoms seriously while giving them practical ways to move forward. One participant said the course “gave us hope” and “showed us a path”.
For someone living with persistent symptoms, hope is not a small thing. But it has to be honest hope: no promise of cure, no suggestion that recovery depends on positive thinking, just a careful way of making illness feel less frightening and less impossible to live with.
This approach is not a cure. It is not a substitute for medical investigation, diagnosis, pacing, medication, social support or specialist care. It should never be used to tell people to push through symptoms. For people with post-exertional malaise, doing too much can make symptoms worse, sometimes severely. Any rehabilitation approach must respect individual energy limits.
Used carefully, however, nervous system education can be one rehabilitative tool. Recovery may involve body-based approaches such as breathing, relaxation, pacing, rest, symptom monitoring and carefully tolerated movement. It may also involve strategies that work through attention, interpretation, fear, planning and confidence. These approaches recognise that thoughts, emotions, immune responses, pain pathways and physical symptoms are part of one biological system.
Not all in your head
Patients are right to be cautious when explanations involve the brain or nervous system. Too many people have been dismissed, disbelieved or told to exercise their way out of illness.
But rejecting brain-body science altogether leaves patients poorly served. The nervous system is part of the body. It can be injured, sensitised, overloaded and, in some cases, supported to change.
Persistent symptoms are real, biological and often disabling. For some people, understanding the nervous system can offer a practical route towards managing symptoms and improving quality of life.
People living with long COVID, ME/CFS and other persistent illnesses do not need another argument about whether their illness is physical or psychological. They need careful assessment, respect, support, research and treatment approaches that are honest about uncertainty.
Most of all, they need healthcare that does not give up when the tests come back clear.
Kate Sheridan works for Dublin City University, Ireland. She has received research funding for unrelated projects in the area of chronic pain rehabilitation and maintains a part-tme role in private clinical practice specialising in chronic pain management.
Professor Sarahjane Belton developed the Second Arrow: Transforming Long COVID programme described in this article. The programme was developed independently, outside of her university role, drawing on her lived experience, research and professional expertise. It is not operated as a commercial business, and participation is offered on a voluntary contribution basis, with no one excluded on financial grounds. The programme was the subject of the feasibility study discussed in this article.
