Hi, I’m Tui Tapanui (an online pseudonym).
In late July or early August 1983, when I was just 21 years old, I caught a virus that changed my life in ways I could have never imagined. I was a graduate student at the University of Waikato, in Hamilton, when an unidentified virus hit the campus and wreaked havoc. Hamilton was later documented as the scene of a cluster of at least 80 cases of Myalgic Encephalomyelitis (M.E.). I was therefore one of the uncounted thousands of New Zealanders who developed M.E. around 1983 or 1984, apparently as the result of a nationwide epidemic involving an unidentified ‘flu-like virus.
I was first officially diagnosed with Myalgic Encephalomyelitis in May 1984, a day or two after a landmark article was published in the New Zealand Listener which raised the alarm about an unfolding “M.E. Mystery Epidemic”. New Zealand doctors soon came to refer this as “the M.E. Syndrome”. The more minimising term – Chronic Fatigue Syndrome – which later hailed from the USA and was subsequently adopted by the New Zealand medical profession, had not even been invented at the time.
Fast forward forty-plus years and I’m now a grandmother of four, aged in my 60s, and I’m still sick. I have therefore watched a lot of history unfold in real time, and I’ve had a wide variety of M.E. related life experiences that, while admittedly character-building, are not to be recommended.
As a result, I have so much potential content for this website and future blogs rolling around inside my head that it’s hard to know where to start. Suffice to say, I have a lot I want to say!
Unfortunately, after more than four decades of M.E., my level of cognitive dysfunction has progressed to the point that writing even a few sentences can be a major challenge. Composing words that flow together is now ridiculously time-consuming, mentally exhausting, and likely to trigger post-exertional symptom exacerbations (PESE, also known as post-exertional malaise or PEM). So in reality I may not be able to say very much at all.
Under the circumstances it is likely this website will have to remain under construction over a period of years, as I work on piecing together the history of M.E. and CFS in New Zealand, and gradually add new static pages to factually document this history.
There could also be long gaps between blog articles. However, in my blogs I will aim to share a bit more about my background and some of my life experiences, in order to illustrate various problems that people with M.E. and CFS can still face. When I do this, the blogs will be tagged with “Tui’s Story”, and I will also provide links to these personal stories on this page.
Blog posts that share some of Tui’s Story
Tapanui ‘Flu: 40th Anniversary of the Breaking News that Stunned New Zealand
Tapanui 'Flu Blog 