Nick's Story

A healthcare company built by patients for patients

I developed Long Covid after accepting my dream job as Chief Scientific Officer of a stem cell engineering company in Kobe. I fell seriously ill in late 2021, five months after contracting Covid during the delta wave.

Falling ill

After my original infection, I developed some cardiac symptoms, shortness of breath and fatigue. It was only after a gym workout that an extreme ME/CFS-like condition completely changed my life.

I learnt the hard way what Post Exertional Malaise (PEM) is. At my worst, I once wrote one short email which caused a fallout that took me a week to recover from.

I could barely talk for more than a few minutes, walking was nearly impossible, I had constant brain fog and severe cardiac symptoms which were eventually diagnosed as pericarditis. Even short mental exertion could trigger my debilitating whole-body symptoms to worsen severely. It's only been recently that I've been able to walk more than 50 metres without the use of a wheelchair.

Like many Long Covid patients, Post Exertional Malaise has drastically altered the way I live my life.

Recovering slowly

Over the past 18 months, I have been very lucky to be able to build up my stamina for work, mental activity and talking. Now I have been able to go back to work and I’m also fortunate to have fewer neurological symptoms than many other people.

The patient community

During the two years that I have been struggling with ME/CFS-like Long Covid, I have connected with a large community of patients who have become close friends and have made a huge difference in my well-being.

Since I’ve been ill, the patient community has transformed from relying on traditional healthcare to taking control of their own health. Through testing and sharing information, we help each other understand our diseases and find solutions to each contributing problem.

Using the skills from my career and collaboration with talented patients, we've built up an incredible knowledge of the underlying mechanisms involved in Long Covid.

Through classifying our diseases and self-treatment, we understand ME/CFS is a complex disease involving multiple body systems, spanning from cellular level to systemic complications related to the Automatic Nervous system (ANS), vascular, and immune systems.

Long Covid presents a wide range of symptoms and manifestations, and the same treatment can have different effects on different people. This means that each patient's experience is unique.

Unfortunately, many patients with Long Covid feel let down by traditional healthcare systems. They have often been dismissed, misdiagnosed, or given inadequate treatment. This has been a traumatic experience for many patients, leaving them with few options.

Long Covid patients need personalised, patient-centered care. It is my hope and mission to develop systems that can make a real difference to the many people who are affected by this condition.

Motivation for starting Amatica

We see that people are managing their health themselves, and we want to expand what is available to the patient community. Our core goal is to provide people with the tools and information to monitor and understand their health, and provide access to healthcare practitioners who will personalise care to each individual, at an affordable cost, and at scale.

One size does not fit all for Long Covid, or any disease. We aim to empower people to investigate and monitor their own health to a much deeper level than has been available to them previously. ME/CFS and Long Covid, while complex on their own, can present with other diseases which are often overlooked and not properly identified.

These associated or secondary conditions can include the reactivation of latent infections, exacerbation or triggering of autoimmune diseases, dysautonomia, cardiovascular diseases, microbiota disturbances or dysbiosis and many other problems.

Identifying these comorbidities can be essential for people to properly classify their overall health problems and receive the appropriate care. Many patients could see positive changes if these problems are identified and treated. Crucially, identifying a secondary problem can at least give clinicians a target that they are happy to treat in isolation.

A key motivation for starting Amatica is to empower patients to get ahead of the many secondary health problems that Covid infection can trigger, or that can develop over time.

During the pandemic and during the emergence of Long Covid I have continually studied the data. At this point, in 2023, we now have several population scale studies that show us that the pandemic has triggered a secondary public health crisis of much higher rates of other diseases in people who may not think there is any association with the pandemic.

Our central goal is to get ahead of an ongoing wave of secondary health problems triggered by the pandemic. 

Most patients are not being adequately monitored for early signs of secondary problems developing even though clear data is showing scarily high rates of these diseases. There is strong evidence that many people will develop cardiac problems, autoimmune diseases, neurodegenerative diseases and other health problems.

While these secondary health problems can be serious, if they are detected early many things can be done to reduce their severity or in some cases prevent them.

For me, surviving with ME/CFS has meant practising radical gratitude. But I was also privileged to have support from around me and to get to a place where I was able to continue my work, in an industry I love.

Being a part of and working with the hive mind of the patient community has been hugely inspiring and made me believe deeply that people with chronic diseases will be central to building a better future of healthcare. I have seen people with no biology background become experts. I have seen first-hand the power of bringing patients together into a community collaborating to understand and classify disease, and then personalising our approaches.

And no one can see more clearly the need for modernisation, change and a forward-thinking and can-do mindset than the patient community themselves. I believe we will see members of our community build that future.

Wishing all the best in your journey to wellness,