After a mild traumatic brain injury turned her life into a ‘game of snakes and ladders with no ladders’, Ursula Cochran discovered a powerful tool she could use to start getting better – her own brain. Here, she explores the potential of mind-body training for sufferers of other chronic illnesses, including long Covid.
I know the fatigue. I know the pain. The nausea. The insomnia. I’ve been around and around the boom-bust cycle – with booms so tiny they might have been one extra phone call, leading to busts so big they set my recovery back six weeks.
I’ve felt the loneliness – not for want of dedicated family and friends, but for want of energy to engage with them. I’ve spent countless hours in noise-cancelling headphones – not because I didn’t want to listen, but because I couldn’t process more than one sensory input at a time. I’ve travelled many kilometres blindfolded because I didn’t have the cognitive power to process landscape at 100 km/hr. I’ve witnessed with dismay as new symptoms arrived out of the blue.
I’ve experienced the desperation of my life turning into a game of snakes and ladders with no ladders. I’ve grieved for my old life and bid farewell to my dream job. I’ve watched with gratitude as my husband stood by me when I had little to give and no sign of getting better. I’ve felt my heart slowly breaking when I couldn’t offer my children the creative attention that I thrived on giving them.
I’ve been there curled up in the foetal position wondering if my brain had enough power to keep me breathing.
The community of chronic illness
I haven’t had long Covid. But, amid Covid-induced fevers last year, I realised that my multi-year recovery from a mild traumatic brain injury was strikingly similar to experiences of long Covid. Even more than that, strikingly similar to any chronic illness. Post-concussion syndrome, long Covid, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), complex regional pain syndrome, post-traumatic stress disorder are all cases where an initial trigger (injury, virus, operation, traumatic event) leads to an extended period of poor health.
It turns out that our own adeptly adapting brain, our nimble, sensitive nervous system, our safety net of an immune system can lead us, unwittingly, into chronic illness regardless of the primary ailment and through no choice or fault of our own. There is common ground we long-haulers can explore for solutions.
Over 65 million people have continued in poor health for months or years following infection with Covid-19. And that’s a highly conservative estimate. Long Covid numbers in Aotearoa New Zealand are likely to be in the hundreds of thousands. With so many people suffering severe and ongoing impacts, scientists searching for causes, pharmaceutical companies testing medications, and doctors at a loss about what to advise beyond symptom control, there is another powerful tool we need to start using to get better – the phenomenal human brain.
What causes chronic illness?
There is a storm in the hill country. Land is saturated and unstable. Landslides have blocked waterways, others are flooding. Usually when our system gets disrupted, the healing process works to restore a state of equilibrium. But there are some fundamental processes in the body that, in times of illness, can stall our return to health. Let’s head to the hills to investigate.
At the highest peak, overlooking surrounding lands, we find the brain. At the same time as reliably controlling much of our existence, the brain is also continually changing. Neuroplasticity is the ability of brain cells to adapt in response to internal and external stimuli. It happens throughout our lives and is a subconscious and neutral process – there is no strategic decision-making about whether changes are good or bad for us. It is based purely on how often messages are sent between different parts of the nervous system. When messages are frequently repeated, neural pathways become well-formed, making actions easier and faster to perform. So, when healing from an injury or infection, if we’ve been tired, sore, breathless, feverish, dizzy, nauseous, sad and worried, neuroplasticity can make these symptoms become the default settings.
Across the main range of the hinterland, spanning the spine and reaching into every inch of the territory, we find the nervous system. Part of the nervous system is dedicated to helping us survive physical danger. Somewhat understandably, our subconscious brain can start perceiving illness, or injury, or their ongoing consequences, as dangerous. The highly alert state of fight or flight mode activates, ready for action. Instead, in ill health, we need to be in rest, digest, repair mode – the physiology designed for recovery. Usually, we exit the heightened state of alert once the threat has gone, but, unlike tigers or terrorists, illness doesn’t always disappear obviously or quickly. Staying too long in fight or flight mode can make us sick in itself, because so many crucial bodily functions are compromised to give us the powers that we need to escape danger. So now, in addition to our initial ailment, we’re stuck in a physiological state that’s making us ill and from which it is hard to heal.
We haven’t ventured into the lower hill country yet and already we have two useful bodily processes that can become problematic after triggering events. Given the intricate interconnections between all parts of the body, including close communication between the immune and nervous systems, it’s not surprising that once disruption sets in somewhere, it quickly cascades into multiple systems. Physiological regulation is impaired, and we end up with an unnerving array of symptoms affecting all parts of the body.
The symptoms are real. They are absolutely not “all in the mind”. Although they may be perpetuated by the brain, the symptoms are very much in our bodies. They are a complex mix of effects from the original trigger and from ongoing disruption to bodily processes. Symptoms arise, change, interact, or worsen, with little rhyme or reason, which is unsettling enough to further activate the threat response. At the mercy of automatic bodily processes, we become stuck in the chaos of chronic illness.
What causes long Covid?
No one has yet demonstrated specifically what causes long Covid. But I think it has less to do with Covid the virus, and more to do with well-intentioned physiological processes not operating in our favour during illness. The latest research is consistent with this idea.
Without doubt, there are numerous ways that Covid-19 causes havoc in the body. It is a seriously challenging virus for the human species to deal with – 6.9 million reported deaths globally, of young and old, weak and strong, attest to that. For some people, permanent damage has been done by the virus. But what causes symptoms to persist for months or years in at least 10% of cases?
Long Covid (officially, post Covid-19 condition) occurs within three months of a Covid-19 infection, either persisting from the initial infection or arriving after recovery from the acute phase of Covid-19, and lasting at least two months. Common symptoms include fatigue, shortness of breath, and cognitive dysfunction, but there are over 200 symptoms impacting most parts of the body.
International research is converging on the idea that symptoms of long Covid are primarily neurological (relating to the nervous system). And already, researchers are likening long Covid to ME/CFS. Here in New Zealand, Professor Warren Tate, along with colleagues at the University of Otago, has been researching ME/CFS for the last 10 years and he believes that the prolonged effects of long Covid are occurring via similar mechanisms to those of ME/CFS. While the two illnesses are caused by different triggers, and have specific symptoms related to those triggers, they are effectively the same disease. Genetic background or prior health events may prime certain individuals to be more susceptible than others.
In their 2023 paper, Tate and co-authors observe that, in the development of ME/CFS and long Covid, initial activation of the immune system – with a brief inflammatory response beneficial for removing viruses – becomes prolonged. This leads to a dysregulated immune system “with an ongoing perception of a continuing threat”. Unusual signals from the chronically activated immune system probably trigger an inflammatory response in the central nervous system. The authors propose several mechanisms by which the brain becomes involved and sets off its own immune response. Neuroinflammation then compromises the brain’s ability to regulate physiology and maintain homeostasis (stable, optimal functioning), thereby leading to the incapacitating symptoms of fatigue, brain fog, post-exertional malaise and unrefreshing sleep that characterise these illnesses. In this dysregulated state, it is suggested that minor day-to-day stressors are interpreted as major threats so further neuroinflammation is activated, leading to relapses and a continuing cycle of illness.
My non-specialist reading of this model takes me straight back to what was happening in my body in the aftermath of my head injury. Post-concussion syndrome may start with the brain, long Covid may start with the immune system, but that doesn’t mean there aren’t overarching drivers and cycles of disruption common to all chronic illness.
Where is the hope?
Hope lies in the hill country. After the storm, there was flooding in the lowlands, so we got busy plugging every burst dam, mending breached stop-banks, and repairing broken bridges. We’ve been caught up in the downstream effects of chronic illness, distracted by the numerous symptoms we suffer. In addition, we need to be up in the headwaters stabilising landslides, clearing waterways, and allowing new channels to form to prevent damage on the plains.
Our own amazing brains can heal themselves, regain abilities after strokes, recover from trauma, even compensate for lost senses, so they can help get us better from long Covid. We’ve seen how neuroplasticity and the nervous system have roles in maintaining chronic illness – we need to start harnessing them to sustain health instead. When the brain and body are running circuits of fatigue and pain like a broken record, we know it’s time to intervene.
It may seem like the subconscious brain is inaccessible and unable to be influenced. It is true that it automatically organises thousands of crucial activities in the body, like pumping blood and breathing air, without a conscious thought. But to do these jobs, the subconscious brain is acting on cues from our body and environment all the time. It is constantly processing sensory information, scanning for threats or invasions, and adapting its response. This makes the brain able to be influenced and changed.
My child is a Rubik’s cube enthusiast, so I’ve attended the New Zealand Nationals of the World Cube Association. I marvelled at people there who had taught themselves to solve a 3×3 Rubik’s cube blindfolded in under 30 seconds. Their fingers go like the clappers. Conscious thoughts can’t travel fast enough to tell the fingers what to do. These cubers have studied cases, memorised algorithms, learnt finger tricks, and practised, practised, practised until movements are semi-automatic – the subconscious brain has learnt how to solve the puzzle.
Practice is the key to training the brain and body back to good health. You don’t need any special skills, you just need to be keen for change, open-minded, and dedicated with practice. Mind-body training programmes can show the way. To name just a few approaches, there’s Dr Rick Hanson’s Positive Neuroplasticity Training, Alan Gordon’s Pain Reprocessing Therapy, Annie Hopper’s Dynamic Neural Retraining System, Ashok Gupta’s Gupta Program and Dr Phil Parker’s Lightning Process. There’s even a world summit on rewiring your brain.
After almost two years of painstakingly slow progress with my concussion recovery, I heard about the Lightning Process. It was designed by Dr Parker in the 1990s as a technique to restart the disrupted healing process of chronic conditions. Parker recognised that neuroplasticity could make illness a stable state and that we could use it to make us well again. I took the course in Wellington – there are practitioners in New Zealand – and the pace of my recovery accelerated exponentially. After three days of training, I no longer needed rests during the day; after one week, exercise became energising rather than exhausting; after two months, my health was better than it had been before my injury. It took many months to train back to the level of cognitive ability I had been operating at previously but, using the Lightning Process, I got completely better.
I was familiar with research on the ability of mind and body to influence each other but I had no idea how to put that knowledge into action to regain health. The Lightning Process course provides practical exercises to get ourselves into the right internal state for healing using three stages: recognising when we’re in unhelpful states, interrupting those states, and choosing new, helpful directions. The techniques, including neuro-linguistic programming, movement, visualisation, and coaching, approach mind-body communication from multiple angles in deliberately creative ways to make our subconscious sit up and take notice.
The key advantage of mind-body training is that you can become healthy quickly. Such change is hard to believe when you’ve been very sick for a very long time. But when we learn how to switch default neural pathways in the brain to new healthy pathways and encourage the nervous system back into rest and digest mode, we can start to understand how progress can happen rapidly. Like an ethical hacker, we are correcting some faulty software. Or like a train controller, we are switching points to direct trains onto a different network of tracks.
As an intervention for long Covid, the Lightning Process is promising for several reasons. Firstly, it is based on a model of chronic illness very similar to that now being proposed for long Covid. Secondly, techniques can be done from a bedridden or housebound state. You can start very small with short bursts being taught online or next to a sickbed.
Finally, people with long Covid are getting better using the Lightning Process. While there is some published research on its efficacy for other conditions, and case reports for its use with long Covid, it’s too early for major studies of the Lightning Process’s effectiveness with long Covid. However, we can read personal reports or talk to those who are increasingly seeing long Covid cases. My practitioner, Jenny Oliver, has helped hundreds of people with all sorts of conditions improve their health. Of those officially diagnosed with ME/CFS, Jenny recorded that six months after completing the Lightning Process, 84% were back on track with their health, 12% had some improvement, and 4% remained unchanged. Already Jenny has worked with 51 people officially diagnosed with long Covid and 98% of them are healthy again.
Hope for long Covid lies in the fact that people are getting themselves well by training their brains and bodies.
My eureka moment
Last year I hit my head again. It was over four years since my concussion, and I had fully healed. Thankfully, it was only a minor collision with my child as we leaned over to greet the dog simultaneously. The head-knock was much too small to have damaged my brain and yet, 24 hours later, I started feeling spaced out, unsteady on my feet, and nauseous. By the next morning I felt like I’d been punched in the face, my scalp was on fire, my mind scrambled, and I was utterly drained. The symptoms, although milder, were just like those of my concussion, even down to pain exactly where I’d originally hit my head.
After a few days enduring symptoms, I recognised there was no new injury, but there were some deeply carved neural pathways from my concussion recovery years earlier. I was “doing” concussion without having a brain injury. This onset of symptoms from a harmless trigger was, for me, stark evidence of how old neural pathways can activate, and orders get sent throughout the body to do a wide range of awful symptoms even when they’re not necessary. This is what relapses are made of. This is what chronic illness is made of.
So, what did I do? I intervened. I did the steps of the Lightning Process – with the conviction that comes from knowing how it works, the skill that comes from practice, and with the leap of faith required to step aside from instincts to take things carefully. The symptoms stopped – like moving the needle on a scratched record – I got into a healthy groove again, climbed a hill, and celebrated the power of the mind-body connection and our ability to influence our own good health.
A superpower in waiting
Neuroplasticity is a valuable resource for health, so why is it not widely used? Certainly, neuroplasticity is not well-known as an option for helping with chronic illness. Publicised concerns about mind-body training have probably put people off. But most concerns arise from misunderstanding, so it’s worth some clarification.
Mind-body training doesn’t promise to be a cure. It’s a process by which we can build back to health. It’s not about toxic positivity or being a Pollyanna. It is the legitimate, conscious work of training your brain to get your body into a healthy state. It doesn’t encourage you to push through symptoms. It shows you how to get into a physiology that enables you to do more. And it doesn’t mean you won’t have relapses. It will always be possible for old neural pathways to get reactivated, but the techniques give you a way to work out of them again.
Mind-body training doesn’t imply that chronic illness is your fault, or “all in your head”, or a result of being anxious or depressed. The theory behind the techniques clearly states that automatic processes lead us into extended illness and that there are numerous debilitating physical symptoms. But of course, the training can be used to improve mental as well as physical health – we are holistic beings.
Techniques may not be backed up by numerous double-blind, randomised, controlled trials but that doesn’t mean they don’t work, or we shouldn’t try them. It just means it’s hard to test training courses by standards designed for medicines. They are not an attempt to make money from sick people – look for the courses designed by experienced researchers and delivered by trained practitioners. As with any therapy, good rapport with your trainer is important for success. Mind-body training doesn’t work for everyone and it’s not your fault if it doesn’t work for you – it may just mean you need different techniques or more time training.
Even Tate has acknowledged that ME/CFS and long Covid aren’t necessarily progressive or permanent diseases. He told RNZ that the solution could be found in “convincing the body that it’s not in danger, so it doesn’t have to keep putting out signals all of the time and shutting things down, and then allowing the body to heal… I think we’re on the verge of finding something to make the switch”.
In my opinion, at least one thing “to make the switch” has already been found. The work now is to make mind-body training more accessible. Currently, most training programmes have fees that put them out of reach of many. Fundraise if you can – your health is worth it. But even better, let’s get these techniques funded as part of the health system. I now know I could have healed much faster if I’d done the Lightning Process as soon as I was injured – saving ACC a few hundred thousand dollars in salary compensation and treatment costs for my case alone.
One thing everyone will agree on about chronic illness is that there remains a lot that we don’t know. Including mind-body training techniques in the recovery landscape makes sense because they provide such fundamental knowledge about how to escape the health chaos that can follow big injuries, illness, or trauma. And we’re going to need all the help we can get in the face of long Covid. As Professor Danny Altmann outlined to Kim Hill recently, “the oncoming burden of long Covid faced by patients, health-care providers, governments and economies is so large as to be unfathomable.”
Long-haulers, explore the full territory
Your track through the wasteland of illness to the highlands of health is as individual as you are, so you are the best person to explore and find your unique recovery pathway. Official advice provides a map to get you started but you can also go off the beaten track and investigate the full territory. Remember to venture into the hill country – using the innate abilities of your brain and nervous system – to go beyond treating symptoms and start changing your health for the better. If you’ve been sick for too long, I encourage you to research mind-body training to see if there’s a technique and practitioner to suit you.
Most importantly, I want you to know that from the depths of debilitating symptoms, there are ways to be well again. There are ways to be so vibrantly well that energy is no longer a scarce resource; conversation, loud music, bright lights, and late nights can effortlessly coexist; you can read for pleasure and concentrate with clarity for as long as you want; you can run, swim, bike without fearing repercussions. There is restorative sleep. From the seemingly endless turmoil of the hunt for health, you can find peace again. There are new lives better than old lives and second dream jobs. There are closer relationships with family because of the trouble you’ve been through together. Life now feels to me like a game of snakes and ladders with lots of ladders and only short, occasional snakes. I want you to get here too.