Growing up, I was known as the kid who was always on the go. I was full of energy: nothing could hold me back. When my mum was pregnant with me, she said she had never had so much energy in her life. When I was in her belly, she would walk 20 kilometres a day. The weird thing was that she had never done that until she became pregnant with me.

In my early teens, sport was my life. I was playing sports or doing fitness training every day of the week, some days training twice a day. I was an elite basketball player and had played at a high level from the age of twelve. By the time I was sixteen, I was playing in three different teams. I trained five nights a week and played three games a week. I was also representing my school in athletics and team sports, and doing extra gym sessions when I could. I was completely sports mad.

I didn't give any thought to how much exercise I was doing. I was oblivious to the strain I was putting on my body and mind.

Back in the day the philosophy was no pain, no gain and so I pushed hard all the time. It was ALL or nothing.

One day I came down with Glandular Fever, which is known as 'mono' in the United States. My body went into meltdown.

I had no energy. There were days where I couldn't lift my head off the pillow. I was seriously sick and there was nothing I could do about it. The doctors just told me to rest and said I would be fine in a month or two.

But I wasn't.

Originally I assumed it was just a regular cold or flu. But this was much worse than a cold or a flu.

No matter how much I rested, or what supplements I took, my symptoms only got worse. I suffered extreme lethargy where my body felt like it had quick sand in it. The fatigue was so strong it made my eyes hurt. Muscle aches and pains that felt like my entire body was full of lead. Brain fog so bad that I would forget what I said 2 minutes ago. Swollen glands and sore throat that felt like I had literal razer blades down my mouth making it hard to eat or swallow food. Gut issues that never made going to the toilet pleasant and of course the dizziness that made it hard to do near anything without feeling worse.

My sleep was affected by these symptoms and I developed insomnia and restlessness as well. To put simply, what I was going through felt like living hell.

For 9 straight months I had no idea what was wrong with me, my life shrank so rapidly from bubbly, energised and able to do anything and everything to feeling extremely weak, exhausted and completely deconditioned.

It was an extremely scary time, because I didn't know what was wrong with me, at this stage it could've been anything. I thought that maybe I had cancer, it felt so bad.

So bad that no matter how much I would rest and sleep, I would wake up feeling like a truck had hit me, front on. Laying in excruciating pain every day.

After around 9 months of seeing specialist after specialist and being tested for every illness under the sun and having what felt like 100's of blood tests, I was finally diagnosed with Chronic Fatigue Syndrome.

In that moment of diagnosis, I felt relief. Finally! I have an answer, I thought. My jaw softened, I looked across the room to my father and we smiled. Finally WE have an answer. For a second I felt hope in my body. But by the time I left the doctor's office I felt sick in my stomach and totally deflated, because as the appointment finished up he had told me that there was nothing I could do to get better.

"You have CFS but there's nothing you can do to get better."

Nothing I could do to get better was playing over and over in my mind like a broken record.

It was as if, in a moment my life had been taken away from me. Robbed of all my talents, my ability and my livelihood.

I remember as I was walking out of the doctors clinic the last words the doctor said were ... "You just have to rest and wait and see,".

I remember that night of the diagnosis of CFS so vividly.

I came home in total anger and rage. I felt so stuck. It was supposed to be a day of happiness and relief, but without an answer of what to do, I felt so overwhelmed, like my world was caving in.

I remember going into my bedroom, picking up one of my basketball shoes that I hadn't worn in over 9 months and throwing it as hard as I could at my bedroom wall, as the shoe left my hand, I let out a big scream. As the shoe hit the wall, I fell to ground and started sobbing. Tears flowing down my face like a rainforest waterfall on a gloomy day. I cried myself to sleep that night, praying that I would wake up and things would be different. In the morning when I woke, they weren't.

Looking back, it wasn't helpful advice or words from that doctor..

Three years went by. I missed most of my senior high school years, most of my teenage social life and many, many family events. All of my sports activities came to a complete stop. I felt as though I had no life left.

I thought my life was over and that I would never get better or be able to do what I once did.

CFS became my own worst enemy and one I wouldn't wish upon anybody.

I had gone from being a social butterfly and super fit sports fanatic to someone who was essentially bed-bound. I became very depressed.

I remember days where it was cold and grey outside, I would just stare down at the concrete with my hoodie on thinking why me. Why does this have to happen to me? Life felt unfair.

During the four and a half years I had chronic fatigue syndrome, I was told countless times that my illness was all in my head. Teachers and other people in my life would say that I was making it up. Some even accused me of being lazy and a "bad student." That I needed to just "think more positively" and "sweat it out", or that I was "just depressed." I was told so many times that there was nothing that could be done. It made it extremely hard to stay hopeful.

On bad days it got really bad. I remember having food poisoning on top of CFS. I was so debilitated and hurting so much that my mum was caring for me in my bed. I remember looking straight into her eyes as she sat next to me in my darkest hour, with tears rolling down my face, screaming "I don't want to be here anymore, this is so unfair." I was in so much pain and I just wanted to give up.

For a long time, I did not believe that recovery was possible. I saw the rest of my life as an unending existence of pain and misery. Things were looking pretty bleak.

I had seen all types of specialists from all different medical backgrounds and it hadn't helped much at all. I tried almost everything: physios, nutritionists, naturopaths, psychologists, gut specialists, Chinese medicine, supplementation, acupuncture, chiropractors. I also saw that whacky doctor who made me hum happy birthday whilst he tapped me on the back.

You name it, I tried it. Some of it helped a little, but nothing made a difference that saw any major signs of improvement to the quality of my life.

I was lucky enough to find out about a four-week inpatient rehabilitation program at the Austin Hospital in Melbourne. It was run by Dr Lionel Lubitz and specifically designed for people with chronic fatigue syndrome. It consisted of a little bit of everything: restorative movement, physical recovery and rest, lifestyle and recreation, counselling, nutrition, and a little bit of cognitive work.

It was very well structured and it made sense to me. It wasn't about pushing the body hard or doing stuff that wasn't going to help. It was ultimately a rehabilitation program for the brain and the body to start to help function again. My parents and I decided that it was worth a shot. Anything was worth a shot, to be honest, if it could help me get better.

The program ran over four weeks. From only being able to do half a push-up on my knees and to walk for two minutes, I managed to do seventeen push-ups and walk for ten minutes by the end of week four. The team of professionals also helped me work on my brain function and concentration.

Over the four weeks, I did improve my cognitive function. It also gave me structure to my day. They were strict with sleep/wake/rest times and also regimented meal times, to give us the best structure and routine for recovery.

The Austin program showed me that it was possible to do things again. After three years of doing nothing, I had lost all confidence in myself. I thought that activity would only worsen my symptoms.

With a new outlook and appropriate approach to recovery, I had a sense of hope and renewal. It was like seeing the sun rise after a very long and hard winter.

After seeing my strength improve quite dramatically, I remember seeing myself in the mirror 4 weeks into the program and seeing a slight increase in muscle tone and strength that I hadn't seen in years. I started to believe that one day I would be completely healthy again. Real hope entered my life.

This was the start of my journey towards better health.

After completing those four weeks with the Austin program, I was keen to maintain my progress. The team at the Austin Hospital organised a training group just for chronic fatigue sufferers who had completed the program. It ran twice a week and was run by Erin Splatt. In a non-threatening, encouraging environment she reinforced the importance of re-conditioning the body and nutrition. She taught us how the body adapts according to the amount of movement we do. We also worked on our mindset and attitude which was so good. And helpful considering the last 3 years had been completely wasted.

It was practical and proactive and not condescending. She didn't say things like: "think more positively and you will get better." Instead, it was about how we can be more proactive, and how our attitude can shape how we feel. It was all about consistency and accountability. Which was one of the cornerstones of recovery.

With a gradual build-up of strength re-conditioning and recovery, I started to regain my energy. I was able to cope with more at school, and I was able to hang out with friends again. I attended my Year 12 ball and more importantly, I passed my high school examinations (just).

Of course there were days, and sometimes weeks, where I didn't feel that great. But I was determined to help myself get healthy again.

I finally realised that there were things I could actually do to help myself get better.

It was the small steps I took towards better health that helped me the most.

I used to get my dad to take me to the pool before school to do some movement in the water and over time eventually laps – some days I would only last five minutes in the water. But again, I said to myself, "At least I am doing something. I will get stronger eventually if I stick at it".

Socialising was another difficult obstacle to overcome – it was such a mind game for me to go out and see my friends. I used to think to myself, "What will happen if I stay out for too long, or if I don't sleep tonight, or if I'm not in bed by 9pm? Will I be sick in bed for two weeks?"

With support from my family and good friends, I was able to push through that mental barrier and socialise, even if it was only an hour at a time to start with.

My confidence grew as I started believing that I was slowly getting better. It made it easier to try new things again and be proactive about my recovery. Instead of letting chronic fatigue syndrome control my life, I started to regain control of my life.

Of course, I was lacking in energy – but I knew that I had to try and do something to help myself.

For the first 3 years of having CFS and thinking there was nothing I could do to get better felt like living hell.

And at this point even though I had made bits and pieces of progress, I still believed that someone or something had to fix me. I wasn't completely sold on the idea I could be 100% better without a pill or a special doctor.

I know the exact moment when my life changed for the better. It was 2:30pm on Thursday afternoon. I'd just had my twentieth session with a famous alternative integrative doctor. You could only get in to see him if you already knew one of his patients, and then there was a four month wait-list and sometimes a two hour wait in his clinic for your actual appointment. (Not fun when you're suffering from chronic fatigue syndrome).

I remember being filled with fear and excitement as I sat in his office waiting room. It was our last hope. We'd basically tried everything else. Chinese medicine (and thousands of Chinese medicine balls a day), naturopaths, gut health specialists, physiotherapists, psychologists, a long list of other types of specialists. There were also hundreds of blood tests, a supplement list longer than the alphabet and so much more.

We were desperate. I was desperate. I felt like I was dying. I had gone from being a healthy, fit, happy teenager to not being able to lift my head off the pillow. When my parents and I came across a semi famous doctor. Our hope was sparked. He had a reputation for being able to fix the so-called unfixable. We thought 'This is it: this is the cure.'

He wasn't what I expected, he was small in stature and he had frizzy white hair that reminded me of Albert Einstein. He also wore a white laboratory coat, which lent him a bit of a Nutty Professor look. He was a good man and he had a deeper mind than anyone else I'd met. There was intensity in his eyes when he looked at me.

I was trying to get rid of the debilitating suffering I was experiencing day in and day out. I had extreme fatigue, swollen glands, a sore throat, muscle wasting, aches and pains, weakness, dizziness, brain fog, sleep issues and gut health problems. On top of that was intense lethargy and a super low immune system. I just couldn't catch a break and it felt like there was something wrong with me 24/7. I hoped with all my heart that this man was going to get rid of all my pain and suffering.

I did some weird things in those sessions with that doc. He rubbed potions on my skin that he had concocted, I would lay there while he rubbed the oils and potions on my face. I would lay there hoping I would get up and feel 100% better instantly. He even made me drink the most disgusting mineral drink that smelt like dog wee. Every morning I would literally hold my nose, grab this random bottle of minerals he concocted for me and skull it down my throat. After every swig, I felt nauseous like I was going to puke it back up.

Whilst I did some random things with him, he also made a lot of sense. He was so smart and had a depth of knowledge that I couldn't fully understand what he was saying half the time.

The first time I walked into his clinic, within a second of meeting him he said, "Do you drink Coca Cola, my boy?"

To which I shyly replied to "Yes, sometimes."

"Get rid of it my boy. It's poison, my boy."

And so I did.

Up until this point I had pretty much tried everything. You name it, I had tried it.

And at this point I was willing to "try anything" to get better.

10 sessions in, I remember laying down on Fred's practice table. He made me hum happy birthday while he tapped up and down my spine for many minutes on end.

I remember feeling these weird sensations up and down my spine and at the time having thoughts like "What the hell is he doing?" "Is this working?" "Maybe this will work?!"

I thought to myself, "If I have to hum happy birthday while a doctor taps on my back to get my life back... I'll freaking do it!"

Months went on, I had 20 sessions with old doc, and it wasn't cheap. My parents had to chip in (I don't know how they did it as we didn't have a lot of money growing up). I'd noticed slight improvements here and there, but nothing really tangible and it was hard to know what was working and what wasn't. I certainly wasn't feeling significantly better, like I thought I would be after 20 two-hour sessions with the nutty professor.

And then came the day.

Doc was poking and prodding me and making his special potions. He did all these random alternative tests on heart and body that day.

In his eyes these tests determined if I still had chronic fatigue or not. I remember him doing all these random tests, and as he was going through it he would mutter under his breath the numbers 5, 7, 5, 5. After about a minute of finishing his weird and wacky tests, he looked into my eyes and said, "Alright my boy; you don't have chronic fatigue syndrome anymore."

I was struck by two emotions: utter joy and apprehension. On the one hand, I couldn't believe what he was saying, like it was too good to be true. On the other hand, I didn't actually feel much better. Maybe a slight improvement over the 20 sessions, but no crazy amazing change.

I said, "So what do I do now? Can I run?

At this point I hadn't been able to run for almost four years. It was the one thing I so badly wanted to do again.

He replied, "Yes my boy – you can go for a run now."

I was so eager that I walked straight out of Fred's office and went across the road to a beautiful oval Park. I had longingly watched so many people run across the grass in the park across the road in the park each time I went to docs clinic.

I laced up my shoes, took my jumper off and started running. As I started running around the park through the beautiful lush green trees and grass, I remember thinking to myself, this is weird, am I better? I don't feel much different? but if Doc said I'm better, I must be better.

Five minutes into the run, I hit a wall. I went from feeling okay, to not great, to absolutely terrible. It was as if I was running in quicksand. My muscles were cramping and I was in a world of body pain and agony. I had to lie down on the ground just to muster up the energy to get back to my car and drive home.

I got home and crashed. I was in bed for another couple of weeks. With symptoms flaring, I realised I was in a one step forward, three steps back situation.

Initially I was upset. "It didn't work," I said to myself. "I have failed again."

But something special happened in that dark time and it was literally the turnaround in my recovery.

As I came out of the anger and the two week struggle, and as the fog lifted, I had an epiphany.

"No one can get you better but you Toby."

No one can fix you but you.

There is no pill or person that can cure you, but you.

The realisation was so clear.

I had spent so many years searching for someone or something to fix me. And it didn't work.

I invested so much power on everything outside of myself, that I really didn't do much in-between to help myself. I felt powerless.

We are brought up believing that if we get sick, we go to the doctor, get blood tests and then take a pill – and whatever the problem is will go away.

But in my case, after a boatload of blood tests and pills, antibiotics and trialling different techniques and procedures, I realised that's not the answer.

The answer was me.

I had gone through the previous years with the guilt, shame and victimhood that comes with suffering a chronic illness. The guilt I was carrying for my fmily was so heavy, I felt for years I was letting them down, for not being well and for not getting better fast enough.

I felt shame from society. I felt judged for being sick. I lost so many friends during my recovery purely because they didn't get it. Even some of my closest family members didn't believe that I was that sick. To be honest, it hurt so much, most of the time I just wanted to stay in my bedroom and shut myself off from the world.

Even 20 years on, the lack of understanding and awareness is still so low.

Even now as I write this book in 2024, when I meet people and they ask me what I do for a living and I say that I run global online recovery program to help people with Chronic Fatigue Syndrome and associated illnsesses get healthy and start living again, people often say, "Isn't that the yuppie flu?"

People don't get it. Sometimes I just want to slap them in the face when they say "But isn't Chronic Fatigue Syndrome a mental problem?"

My response is always, "No it's a very real physiological, neurological illness that affects your entire life. With it comes secondary depression and anxiety, because wouldn't you be upset if you couldn't live the life you were once able to live?"

And I can still see the doubt in their eyes. But it only fuels my fire to keep going.

Most people don't get it and they sadly never will.

Until I had the realisation that if it was to be it's up to me and that it was all in my hands, I was really good at throwing a pity party for myself. "Why me," I would say. "Life is so unfair."

I truly believed for a long time that there was nothing I could do and that life was not worth living.

But after three years of suffering and heartache, my epiphany through the good old Doc, made me ready for change.

I let go of being a victim, I had to let go of beating myself and feeling sorry for myself all the time. I had to let go of the heavy back pack of guilt and shame that I was carrying around 24/7. Instead I had to chose to become a victor.

I became someone who was proactive in all the areas of health I could control. Mindful of my mindset, making sure I didn't spiral into self doubt and anxiety. I had to learn to utilise the small precious energy that I did have into useful behaviours, tools and actions that would ultimately help me get my life back.

NO MORE QUICK FIX DOCTOR GOOGLING AT 2 AM in the middle of the night!!

I didn't know how long the journey would take, but I knew that searching outside of myself to get better wasn't working. It had cost a tonne of money, it took A LOT of time and energy and ultimately it was depressing.

The craziest thing happened when I had this realisation that nobody could fix me but me, was that I felt real hope for the first time. I felt somewhat in control.

I realised that while I was spending 1 to 3 hours a week on specialists and supposed quick fixes outside of myself, that there were still 165 hours per week that I could control.

I began to wonder how I could use that time effectively to help myself.

The cool thing with this newfound responsibility was that I could still be supported by people outside of me, but this time around I wasn't looking to be cured. I was looking for external support from people who knew better than me in their field. And I was taking charge of getting better.

The cool thing is I had a good track record with the stuff I learnt in the 4 week rehabilitation program and I saw progress.

It was only when I realised that recovery was possible did I start to believe and then act like it was possible for me too!

I took recovery in my hands, fully committed to myself and the process. Mind, body and spirit. From a place of calm, not despair. From a place of hope not hate.

For the first time it felt really good to be in the driver's seat of my life. Working on everything one step at a time. Improving my sleep, dialling in my nutrition, getting the perfect sweet spot with my body's energy output, getting my routine and structure right between activity, rest and expansion. As all this started to take place, my mindset improved dramatically, I started reading personal development books and found mentors and blogs (shout out to Craig Harper) that inspired me and helped me stay consistent and focused. And ultimately over time all of this had a compound effect on my health and wellbeing.

My sleep improved, my gut health got better, my immune system strengthened, my muscle condition started coming up, my stamina and capacity increased and I was able to do more without feeling worse.

Fast forward a year of doing this recovery work and continually progressing, I was living life fully again. I was loving life, socialising, working and just having fun. I had a new lease on life like never before.

4.5 years of suffering, hardship and eventually recovering felt like a never ending marathon. Recovering certainly wasn't overnight, and it certainly wasnt easy. As I started to do the right things at the right time, over time, I got better and better and eventually was able to fully integrate back into life.

I have gone on to do things that I never thought was possible after being sick with chronic fatigue syndrome. I have travelled the world, coached thousands of people in over 66 countries, scuba dived the Great Barrier Reef, snow boarded, and surfed a seriously big scary wave in Fiji called frigates and cloud break.

These days I spend my time between being the Founder of CFS Health, helping my incredible team and clients achieve their life's goals and dreams.

Most days I am down at the beach, hanging out with my dog, Ziggy, travelling the world to see new cultures, and see friends and finding new nature spots that are beautiful. I love surfing, nature, kayaking, fishing, yoga, tai chi, bathing in the sun, making resin art and trying new things, like building a shack.

I know what it is like to have chronic fatigue syndrome. I know that it makes you feel helpless, restless, frustrated, sad, angry, weak, miserable and uncertain about the future. Right now you might be feeling this way. Here's the first piece of good news. If you are reading this, you are someone who doesn't give up. I truly believe that the people who refuse to give up deserve to start living again.

I have seen it time and time again, from kids to grandparents and everyone in-between, mums, dads, teenagers, artists, sports people, academics, even doctors and therapists. From the most severe types with a long list of other chronic health conditions to the milder symptoms and more semi functioning folks. We have seen these people regain their health and quality of life so that they can start living fully again. Even after they were told by their doctors that there is nothing they can do.

Recovery is hard, but not recovering is harder. 

Two things I'd like to ask a favour for.

1. I'd love you to head over to our youtube channel and hit subscribe. It's my goal to help the millions of people affected by this horrible illness all around the world not have to go through what I went through alone. That's why I started CFS Health 15 years ago in the first place. You can do so here www.youtube.com/cfshealth
   
   
2. If you found this e-book helpful, I'd love you to email me your biggest insights or takeaways to me at [email protected]  - I will do my best to respond to as many emails as I can.

Of course if you'd like me to help you with your M.E/CFS Recovery please send an email to [email protected]