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
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
3/ So we, the Birds of New Zealand, reckon you have the rare skills required to cover the #GreatestMEdicalScandal on your show.
We need someone who can tell it how it is - puke and all - so the world can see thru the bird-brained psychiatrists who have caused us harm.
4/ We really need someone who knows how to make a scene about #GreatestMEdicalScandal ... and you definitely know how to create a scene!
#JohnVsJonVsME
5/ And we need someone who is not scared to ruffle some feathers - and clearly you can do that too!
#GreatestMEdicalScandal #JohnVsJonVsME
6/ Plus you definitely are the best campaign manager on the face of the earth!
Remember all those fantastic billboards, positioned in all the best locations?!
#GreatestMEdicalScandal #JohnVsJonVsME
7/ So, John, you are the real Lord of the Wings. You took an obsure puking bird to overnight stardom, and drew world attention to their plight.
We'd love you to do the same for People with M.E., so they learn of the #GreatestMEdicalScandal.
#JohnVsJonVsME
8/ We're lying flightless in darkened nests. We've little research $$$ & no treatments. Many of our doctors have been mislead by bird-brains, who ignore the science & say we just need to flap our wings harder - which makes us sicker.
Please help us! 😘
#GreatestMEdicalScandal
9/ PS - look, it's destiny! You were totally meant for M.E., John Oliver! ❤️
@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!
@TheSpinoffTV 4/ While I’m glad LP helped the author, I believe it is irresponsible to recommend LP to #PwME and #PwLC. The theory that a physical emergency response is the cause of chronic illness is pseudoscience, which flies in the face of the rapidly emerging science for both #LC & #MECFS
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.
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.
3/ They don't realise this yet because governments worldwide have collectively ignored #MECFS etc for decades. They've failed to learn from previous viral epidemics that have triggered long-term disability, because they've failed to track adverse health outcomes longitudinally.
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:
3/ The response below was left on my thread, but the sender then blocked me so I could neither see the comment nor respond. I'm sorry for any offence, it was not intended, and I'd much prefer it to respectfully discuss issues like this to try to resolve them.
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.
3/25 Here's one recent example to illustrate my point. "ME is based on Ramsay’s Definition and an Enteroviral trigger. … It’s not ME if something else causes it." (NB multiple #pwme have been saying this for years, so this is just one example, and not intended to be personal.)