From book to app: Widening the reach of fatigue management after brain injury

By Natalie Mackenzie, BIS Services

A few years ago, I wrote a book.

Not the kind you curl up with, but the kind that sits on a rehab shelf, or in a therapy room, and helps someone make sense of one of the most misunderstood parts of life after brain injury: fatigue.

Those working in the field will know exactly the kind of fatigue I mean. Not ordinary tiredness, but something all-encompassing, that arrives from nowhere and sideswipes even the most educated and insightful of clients.

The closest I have come to it myself is that post-newborn, sleep-deprived madness, where little makes sense and decisions really should not be made.

I have lost count of the number of times it has been described to me as a “descending fog.” I still explain it as a phone battery that no longer holds its charge: you wake up expecting to be full, and you are already down at 40 per cent, and nobody can see it but you.

The Fatigue Management Journal came out of years of watching survivors struggle with exactly this. The book did what I hoped.

Clinicians used it in rehab units, case managers put it into the hands of clients, family members get involved with the mindful colouring pages,and people told me it finally helped them see the pattern in something that had felt formless and frightening.

It has found its way to Australia, Canada, Denmark, India, the USA and most of Europe. I still love it when a fellow professional tells me their client has “the book.”

The reality of who gets support

At BIS Services, now in our 20th year, we train and provide specialist cognitive rehabilitation assistants who work alongside clients, and fatigue management is very often part of that work.

When someone has that input, the difference is significant.

A skilled assistant, guided by a therapist, can help someone monitor their energy, spot their patterns, and gently rebuild a life around the capacity they actually have.

But not everyone has that.

Personal, expert, human contact will always win, and I will never argue otherwise. Yet with declining services, ever-tighter budgets, and what is still, frankly, a postcode lottery of provision, the reality is that most people living with brain injury fatigue will never get that level of expert input.

They are sent home with a leaflet, if that, and left to work out one of the most complicated things that can happen to a person, entirely on their own.

So I began to wonder whether I could at least widen the pool of people who could benefit from the thinking behind the journal, and give them something closer to expert feedback than a blank page and some written education.

Teaching myself to build it

Here is the part I did not expect. I taught myself to build it.

Rather than stay on the sidelines of what artificial intelligence could do, I went deep.

I learnt how these tools work, developed skills in vibe coding and creative programs and I learnt to build a working application by describing what I wanted and refining it, step by step.

What would once have taken months and many thousands of pounds in developer fees, I was able to design and build myself, as someone working with clients who actually understands the problem.

The reasoning, the twenty-four years of understanding what a fatigued brain needs, the judgement about what helps and what overwhelms, that is still mine and very much the feedback of those who have used the journal, and it has to be.

What the technology did was let me put that reasoning directly into people’s hands, quickly and affordably, and keep refining it based on what real users needed.

What the app does that a book could not

The journal is now an app, though the book remains available too.

The app can do things paper never could, and every one of them is designed to reduce the effort for a tired brain, because if I am asking someone with fatigue to do effortful daily logging, I have become part of the problem.

It lowers the effort to almost nothing.

You can log by voice rather than writing.

You can capture a moment with a single tap, a note, a voice memo, even a photo, in the moment fatigue hits, rather than reconstructing it later when the detail has gone.

A book is wonderful in a rehab library or a therapy room, but fatigue does not happen in a library. It happens in a supermarket at two in the afternoon, on a bus, mid-task. I wanted something active and reactive, that lived where my clients live, which is on their phones.

It starts gently.

New users begin with a two-week discovery period, deliberately low-level, because it takes time to build a real picture and because throwing someone straight into full tracking is overwhelming.

After those two weeks, it begins to reflect their own patterns back to them, what drains them, what helps, in a form they can take straight to their clinical team.

It plans with them.

One feature I am particularly fond of lets someone simply say what they have to do that day, and the app organises it into a realistic time blocked plan and builds in the rest breaks.

For a brain that struggles to initiate and sequence, that small piece of scaffolding makes a real difference.

It gets simpler when the day is hard.

On a bad day, one tap strips everything back to the two things that matter, log something, or add a recharge, and hides the rest. The tool eases off exactly when the person has least to give.

It keeps the clinical thinking intact.

The battery, the points, the energy budget, the deliberate spending and recharging of energy, all of it is still there, along with a library of short lessons that can be listened to as well as read, and accessibility built in throughout.

This is not a six-month quick fix, recovery is never linear, and any progress, however small, is huge. The app is simply built to notice the small things whilst also providing key data..

Widening the pool, not replacing the person

It is not a replacement for a skilled human. Personal, expert contact remains the gold standard, and everything we do at BIS Services is built on that belief.

Indeed, we are currently running our own research into the efficacy of cognitive rehabilitation, precisely because I believe this work deserves an evidence base.

But when the human input simply is not available, and for so many people it is not, the alternative should not be nothing.

An app built on twenty-four years of cognitive rehabilitation experience, that reaches someone in Australia or India or a part of the UK with no local service, that asks almost nothing of a tired brain on a hard day, is not a lesser version of care.

And at £5.99 a month, or £47 for the year, it is priced deliberately so that cost is not another barrier for the people who most often go without.

The book started a conversation about taking fatigue seriously, and it travelled further than I ever imagined.

The app, I hope, lets far more people join that conversation, wherever they are, in their own time, with expert thinking behind them rather than a blank page in front of them.

Natalie Mackenzie is a Cognitive Rehabilitation Therapist, Chair of the International Society for Cognitive Rehabilitation, and Founder and Director of BIS Services.

The Fatigue Management Journal is available as both a book and an app. https://fmj.thebraininjurytherapist.co.uk