Tapanui 'Flu Profile picture
Kiwi Grandmother | New Blogger 2024 | #MyalgicEncephalomyelitis since 1983 | #TapanuiFlu epidemic | Mostly housebound | On welfare | #LongCovid ally.
Tapanui 'Flu Profile picture Andrea Fighting for #MECFS Diagnostic Biomarkers Profile picture 2 subscribed
May 31 10 tweets 3 min read
Hi @iamjohnoliver, my name is Tui.

I’m just a New Zealand bird, waiting for a hero to cover the #GreatestMEdicalScandal.

My Pūteketeke cousins tell me you are the Best Campaign Manager, Ever!

I really meme it! (A thread 🧵 … )

#JohnVsJonVsME Photo of two Pūteketeke birds (Australasian Crested Grebes) on a lake saying "psst ... John -it grebes us to see the #GreatestMEdicalScandal" 2/ You influenced a foreign election, enabling a “weird puking bird” to win Bird of the Century.

Then you charmed the citizens of New Zealand into thinking your election interference was not only totally fine, but also ridiculously funny!

#GreatestMEdicalScandal #JohnVsJonVsME Two Pūteketeke birds, on a lake, facing each other, saying "... so scandalous it makes me wanna puke" #GreatestMEdicalScandal
Sep 30, 2023 4 tweets 2 min read
@TheSpinoffTV 2/ So all that was really lightened for me was my wallet. I spent $1,500 in the desperate hope of recovery, when my base benefit was $257 net pw – nearly 6 weeks income! And I’m still on the benefit, still mostly housebound - and I feel very ripped off! @TheSpinoffTV 3/ I know of some people who LP helped & some who it has harmed – including a young woman left hospitalised in extreme agony for literally years, due to over-exerting following an LP course. So anyone with PEM due to ME/CFS or LC should be VERY cautious!
Aug 1, 2023 22 tweets 7 min read
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. 🧵 Image 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.
Aug 26, 2022 25 tweets 10 min read
This excellent report by @kathrynsbach is very sobering. Every country, especially those who have let #Covid rip, can expect major economic damage because of #LongCovid. But as a survivor of a historical epidemic that triggered mass #MECFS I think there's plenty more to come. A🧵 2/ What governments worldwide don't yet seem to realise is that - even if the pandemic ends tomorrow, and not a single extra person falls victim to #LongCovid henceforth - the damage to people's lives & entire economies will likely snowball significantly over time.
Jun 17, 2020 17 tweets 4 min read
1/ A postscript to my earlier (pinned) thread. Thanks to all who supported my comments, and my apologies that I haven't replied to everyone yet (It's been hard to keep track of the notifications, plus I'm exhausted!) 2/ Twitter, unfortunately, has a 25 Tweet limit for threads & I really needed some more space in my original thread, so the final two tweets (24 & 25) had to be pruned to fit. This is what I said:
Jun 16, 2020 26 tweets 9 min read
1/25 I would like to deconstruct one of the persistent myths about #MyalgicE, because I'm seeing a recurring theme where quite a few #pwme are making sweeping statements on Twitter, that have the unfortunate effect of invalidating the diagnoses of other #PwME and/or #PwCFS 2/25 The myth often comes in two parts: (1) that there is just one set of diagnostic criteria that we should all consider to be Holy Scripture, and (2) there is only one possible family of virus that can cause the particular disease described in the Hallowed Diagnostic Writings.