How long is the road to diagnosis?

My story with CFS/ME and how long it took to find answers.

I have had a frustrating medical condition known as chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) for a number of years. The initial trigger is suspected to be Epstein-Barr virus but this is an educated guess and not established fact.

I first developed symptoms of this illness in my mid twenties and the first symptoms appeared to be generalized anxiety or related to PTSD. As I had spent a number of years prior to this in the army as a combat medic and served both internationally and responded to a number of significant domestic disasters. I initially accepted that diagnosis and tried to move on with my life, which was at the time very active. Both as an amateur boxer and working in construction during the days.

Over the year that followed my initial visit to the doctor, the anxiety symptoms came and went in erratic patterns and with it also fatigue and mild gastric complaints too. Still the GP believed it was all related to anxiety. And so I accepted this.

Another year came and went, but it became impossible for me to continue to work. I was struggling to concentrate, focus or function through the anxiety and fatigue. So I stopped working and went back to school to study engineering. This helped somewhat as I was always good at school which lifted my mood, but ultimately stretched my finances to the breaking point and by the end of that year I had nothing left, I was broke. And I was still having these bizarre and erratic episodes of fatigue and anxiety. So I moved home to live with my mother.

After Christmas passed, the following year I took up a part time job in a small yogurt factory earning just enough to get by each week. Because of the shorter working week, I had a few months of considerably better health nearly free of anxiety and fatigue. This prompted me to get back into my boxing training. This was when I first discovered the pattern of post exertional malaise (PEM). Each time I went to my boxing training, about two days or 48hrs later I would develop episodes of panic and fatigue, but they hit me hard, often very hard requiring a whole week off work and lots of rest to recover. I would then recover from this episode and go and do the same again. Each time with near identical results. I was puzzled and pissed off.

I went back to my GP and told them this was happening. They took more bloods and this showed yet again there was nothing wrong. It was still anxiety they said. All in my head.

It took another six or seven visits (I tried two other GP’s) before one finally started to question more seriously what was going on. Then during the later months of that year there was some acceptance that perhaps I had developed CFS/M.E. An illness with two names and a poorly understood pathophysiology. This process of back and forth to the doctor took nearly FOUR years just to get to this stage. And even then the advice they offered me was limited and simple, to rest up avoid strenuous exercise and alcohol and maybe it will just go away. They offered me some counseling services too. But that was about all they could do.

In the year after this diagnosis, I was still surprisingly fit, youthful and strong. But over the years, the resting and pacing I am forced to endure has made my body progressively weaker and weaker. Now very little physical activity can trigger a week long flare up. I cannot even do a regular length yoga session or walk up gentle hills without some payback developing a few days later due to PEM. I also have to eat a very clean paleo like diet. Sugars and preservatives in particular seem to set me off and trigger irritable bowel syndrome, which contributes further to my flare ups. Nor can I drink alcohol. All of this was a big change from my early adulthood which involved daily gym sessions, mid week benders and any kind of spicy takeaway meals that I considered high in protein. I was then essentially a frat boy. Then I became a my battery is always flat boy.

The progress and onset of my condition was slow. So too was the diagnosis. This is the main message I want to share to anyone reading this. That over all, diagnosis and a basic understanding of how to manage CFS/M.E took FOUR to FIVE years to reach from its earliest symptoms. And most of the management of my condition I had to read and learn myself. The GP’s I saw had no idea how to help and offered little beyond SSRI antidepressants. No referrals to any specialists. No nutritional advice. Beyond basic counseling services which had a huge waiting list (It took 4 months before I could get my first session and they had no knowledge of my medical condition either) there was no other mental health care or advice given. No mention of the role of inflammation in the disease process. No mention of mitochondrial health and oxidative stress. Nothing.

I am sharing this story with the world because I believe it will be relevant to many of those whom are injured by these experimental gene therapies. Post vaccine long haul syndrome shares similar symptoms to CFS/ME and I suspect the path through diagnosis and treatment to be just as long and confusing. And for researchers, that this length of time from onset to acceptance will also distort the data. Just because it seems uncommon now, does not mean this will be the same in five years time.

They widely claimed these shots are safe and effective. But we are all aware of the lack of long term safety data available. Conditions like my own and some other jab injuries are not like flicking on a switch. They do not suddenly appear one day fully formed. Instead they emerge slowly only after a period of waxing and waning, coming and going in an erratic frequency. So stay vigilant for this.

The heath system we see today certainly needs a big shake up. It is broken in so many ways. We need more integrative and functional doctors. We need better individualized care. And we need a lot more research into this field of medicine related to complex chronic illnesses and their support.