Thread by @TapanuiFlu

I'm claiming today as my 40th anniversary of catching an unknown virus during New Zealand's nationwide "Tapanui 'Flu" epidemic. I don't know the precise date because I naturally assumed (being a fit & healthy 21-year-old in 1983) that I'd quickly recover. So I didn't diary it. 🧵

2/ Never in my worst nightmares would I have imagined that I could catch a virus, remain sick for literally decades, and still be trying to recover when aged 61. I didn't even know such a disease existed.

3/ In late July or early August 1983, when I first caught this virus, I'd never heard of Myalgic Encephalomyelitis #ME (a term from the UK that was not yet used in NZ). And the minimising term Chronic Fatigue Syndrome #CFS was still some years off even being invented in the USA.

4/ The nickname "Tapanui 'Flu" also did not yet exist. The news of what had unfolded that year in the small township of Tapanui, West Otago, had not yet reached the news media at the time I got sick - and the public was still completely unaware a wider epidemic was in progress.

5/ So all I knew was that I got hit by a 'flu-from-hell. I don't remember all the symptoms, but I do remember a really strange pressure headache at the base of my skull. Extreme sensitivity to light & sound. Not being able to stand, watch TV or listen to music.

6/ Extreme exhaustion & needing endless sleep. Not being able to read or concentrate. Not being able to construct handwritten sentences or conduct a conversation. Needing to pee every few mins while awake, but struggling to stagger/crawl to the loo. Loss of balance & coordination

7/ I stayed home from university lectures & my 2 part-time jobs. I waited and waited and waited to fully recover, as the months dragged on. There was no internet so it was impossible to network with others, but my flatmates did tell me news of others who were similarly affected.

8/ It was Dr Peter Snow, the General Practitioner for the small township of Tapanui in West Otago, who first noticed something odd was happening as early as 1980 - initially affecting some of his patients who happened to be farmers.

9/ A zoonotic illness was strongly suspected as the origin of the Tapanui 'Flu virus, due to contagious abortions happening amongst the farm animals which coincided with the farmers falling ill. But nothing specific was ever detected or confirmed.

10/ By early 1983 the epidemic had hit Tapanui itself - meanwhile infected sheep were apparently slaughtered & their meat was exported🤢(I guess that's one way to minimise any evidence for a zoonotic illness that had the potential to damage one of our biggest exports!)

11/ In Aug 1983, just after I fell ill, Dr Campbell Murdoch arrived from Scotland to take up his new positon as the Elaine Gurr Professor of General Practice at Otago University. He was the first person to identify this NZ outbreak as #MyalgicE

12/ Prof Murdoch became our champion. He believed ME was a genuine illness (unlike a number of his colleagues) so he repeatedly fronted media interviews to make this message clear. And he started research programmes, which were then hampered by our own Ministry of Health.

13/ Prof Murdoch's research was also thwarted by the NZ Medical Research Council, which turned down an extensive grant application. From memory their reason for refusal - there was insufficient evidence the disease existed. (Well, yeah, but this was why we needed to research it!)

14/ Prof Campbell later found immune abnormalities in what little research he could do on a shoestring. Dr Les Simpson found red blood cell abnormalities & Dr Michael Holmes found evidence of a retrovirus, but our MRC repeatedly turned down their funding requests too.

15/ It was in May 1984 that the NZ Listener published a landmark article by Jackie Steincamp entitled "M.E. Mystery Epidemic". When I first read this I realised I probably had M.E. This was also the point it finally became clear to the public that an M.E. epidemic was in progress

16/ Dear Elmo, I spent all day composing a tweet thread with 25 tweets in it - only to get a message when I posted it that "Something went wrong but it's not your fault". Great! Your crappy platform lost 10 of my tweets and ruined my thread. Damn you. Giant black X's to you too.

17/ Ok, will have to ad-lib and take some short cuts. Here's a video that moved me to tears 8 years ago when I found it - it put things into a clear historical perspective. Just look at all these missed opportunities to research ME over the last 90 years.

18/ So here's a screen shot of the bit that made me cry when I first saw it - 3 documented clusters - turns out I was part of the Hamilton cluster in 1983. It took me 32 years to find this. Up until then I thought the Tapanui Flu epidemic had started in 1984 AFTER I got sick.

19/ The confusion with dates is probably due to a delay before the first publication in the NZ Med Journal - the research for this paper was done in 1983, but it was not published until June 1984 - so the Tapanui Flu epidemic is often dated from 1984, which is not correct.

20/ Anyway there were way more than three clusters - the whole country got hit by this thing. There were at least 20,000 victims left with ME after the epidemic - but of course no-one bothered officially counting us, it was not a notifiable disease, plus there was no followup.

21/ And what truly sucks about this is we are now watching history repeat itself with #LongCovid - no one's officially counting, it's not a notifiable disease, there's little financial or practical support & no followup. And #pwLC are now being gaslit & neglected just like #pwME

22/ In 2023 there's still a battle going on between the biopsychosocial brigade & medical science. Science is winning, hands down. Meanwhile Their Eminences, the Gaslighters & Minimisers of Medicine have earned their place in the history books & it won't be a pretty sight! 😉