Reprinted with the kind permission of Dan Neuffer and The Community of Hope for Recovery from M.E. / Chronic Fatigue Syndrome
A couple of years before my ME/ CFS started, I made a major career change from my science work as a physicist specialising in lasers and optical systems to a technical specialist in the financial services industry. The change was driven by my decision to get married and start a family and not wanting to have to chase work interstate or overseas.
Then, following a very rough year during which I nearly lost my wife during the birth of our son, I was working hard on my career change and had also started another major undertaking outside of work.
When a colleague’s husband had come down with the chickenpox, I quickly organised a vaccination as time off sick was the last thing I needed. However, within a week of receiving the vaccination, my first ME/CFS symptoms appeared, which were extreme fatigue affecting my ability to walk.
My illness quickly morphed into a large range of classical ME/CFS symptoms. I suffered with a staggering range of symptoms over the years, but my main ones included ongoing extreme fatigue not alleviated by rest, bouts of fever and other flu-like symptoms, gastrointestinal symptoms as well as night sweats, cardiac symptoms, orthostatic hypotension, allodynia, excessive urination at night, salt cravings, and neurological symptoms such as fibro fog. My symptoms changed over the years and my fibromyalgia pain symptoms became more prominent during the second half of my 6+ year illness.
Like many others, I soldiered on as best I could until eventually I had to work part-time and later on was unable to work at all for extended periods of time, especially during the later parts of my illness.
I often say – “Only a ME/CFS/Fibro sufferer knows the feeling.” That was probably one of the worst things besides the actual illness. People often think they understand you because they have experienced exhaustion or fatigue, but ME/CFS takes it to a whole new level. And like any chronic illness, over the years it can become difficult to cope with all the challenges that brings.
But it wasn’t just the illness that was a problem for me, one of the worst things was not knowing why I was ill or what was causing the problems. For several years I thought it was some mystery virus or some other sort of illness. It was only after numerous exhaustive (and exhausting) investigations with multiple doctors that it was clear that I had ME/CFS. Whilst I got some comfort from at least having a label, given the official lack of understanding and poor prognosis, it was a double-edged sword.
After around four years of illness, I had managed to somewhat steady my cycle of symptom flare ups and basically resigned myself to this being a lifelong condition and to just try to live with it as best as I could. Coming to accept this actually gave me some sort of peace, but then my health took a drastic turn for the worse, which was my turning point.
I have heard it said that things have to get worse before they get better. Well, there was no “getting better” in sight and all I managed to do was “get worse” over time, even though there were some moments of respite.
However, after my illness reached its low point, I dedicated myself to stop reading about the usual ME/CFS info out there, to stop searching for other’s ME/CFS recovery stories (I never found any anyway) and to stop that roller coaster of hope and disappointment from trying treatments that had never worked out for me. Instead, I wanted to try to find out WHAT was really going on, what was driving the illness. So I started my own research project by collating commonalities and differences amongst sufferers and investigating what could be causing some of the measurable physical changes.
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Given that I don’t have a background in medicine or biology, and that I was still very ill and had some difficulty concentrating for any period of time, this was a difficult and frustrating journey for me. However, soon more and more pieces of the puzzle started to fall in place until I started to form a clearer picture of what goes on with ME/CFS.
Whilst my confidence in the validity of this explanation grew more and more over time, especially as I discovered other researchers who had similar views, I realised that translating this knowledge into a recovery was by no means certain.
My recovery was in stages and actually included many treatments that I had previously used without success. I think the biggest realisation was the importance of having a comprehensive plan to see through to completion as opposed to the shotgun approach.
Initially I healed my gut and changed my diet under the guidance of a very skilled doctor. I also used various supplements to improve my metabolism, my detoxification, and to reduce the oxidative stress I was experiencing. I treated a variety of the common dysfunctions in ME/CFS using reasonably well-understood treatments, but my NEW UNDERSTANDING allowed me to avoid those that would be detrimental to my recovery.
One of the key things for me was also creating a healing environment. I made lifestyle changes and meditation also played a big part during my recovery. As I progressed, I also used a range of other physical strategies as well as mind/body strategies to address what I believe to be the central cause of ME/CFS and Fibromyalgia. These might best be described as a combination of CBT, NLP and self-hypnosis.
But without a doubt, having a deeper understanding of how the illness really works was the absolute key to my recovery. That is why I usually don’t always focus on talking about exactly what I did, because whilst much of it is very relevant to most people and already widely understood, I believe that the KEY TO RECOVERY is tailoring a plan that addresses the underlying triggers particular to each person experiencing the illness.
All in all, my recovery started after being ill for five years and took me around 18 months. I made some very significant progress in a matter of weeks but other improvements took many months – and of course, there were setbacks along the way, which was often very disheartening. Now I have been recovered for around five years and frankly have no concerns about relapses, which was a big concern in the beginning given my experience of disappointments. My message to everyone is always that recovery is possible, but we really need to get beyond just treating and covering up symptoms!
Hope my journey inspires you all to follow in my footsteps!
Dan Neuffer, a former physicist, recovered from ME/CFS and Fibromyalgia after being ill for over 6 years, long after having given up on any hope for recovery. Based on years of research, Dan pieced together a hypothesis for the pathogenesis of these illnesses to answer all of his unanswered questions.
As a result of his research and recovery, he wrote and published the book CFS Unravelled – One man's search for the Cause of Fibromyalgia and Chronic Fatigue Syndrome and the Discovery Essential for You To Recover. His book shares an explanation that demystifies how people get ill in so many different ways and how people can recover. No magic cures, just science-based information to help people tailor a recovery plan.