About | Pseudonym

I’ve chosen to use the pseudonym for several reasons.

Firstly, I’m rather shy and prefer to be a wallflower in real life. So the thought of having my name splattered around the internet literally makes me shudder!

Secondly, I am intending to comment on issues involving medical ignorance, arrogance and neglect; my personal battle with a major disability insurer; and problems encountered with Work and Income (WINZ). I don’t want to obtain a reputation as a being a “problem patient” or “problem client”, as this could negatively impact my real-life access to medical care and welfare services.

Thirdly, I have multiple family members and friends with M.E., and I intend to write about some of their life experiences (also using pseudonyms). I do not want to accidentally violate their privacy by having them linked back to me.

Why “Tui Tapanui”?

For the benefit of any overseas readers wondering what my pseudonym means, or how to pronounce it, the tui is a native bird known for its birdsong. And Tui is also a popular given name for females in New Zealand. (For pronounciaton listen here.)

Tapanui (pronounciation here) is a small town in West Otago, near the border with Southland. It appears to have been “ground zero” for the historical Tapanui ‘Flu epidemic in the early 1980’s. The term “Tapanui ‘Flu” was later used more broadly in New Zealand, to refer to sporadic as well as epidemic cases of Myalgic Encephalmyelitis, and it also included Chronic Fatigue Syndrome from the late 1980s onwards.

A confession

I have a wee confession to make, so that no-one feels mislead. Despite my choice of pseudonym, I’ve never been to Tapanui.

The feature photograph for this page shows me located in the wider Otago region, paddling in the icy waters of Lake Wakatipu. Geographically this was probably about as close to Tapanui as I’ve ever been.

I’m a North Islander, but I have visited the South Island a few times in my life, including a visit to the Queenstown area in 2013 to attend a joyful family event. I did think about trying to extend my trip to visit Tapanui, but I was too broke to hire a car, and too exhausted to drive it the extra 250km (or 150 miles) to get there.

But visiting Tapanui is definitely on my Bucket List, because I would love to see where this all began. I’d especially like to pay my respects at the memorial the town has created for its beloved General Practitioner – the late Dr Peter Snow – who was the first person to raise the alarm as an M.E. epidemic began.

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