Excellent 🧵 Simple clear description of Post Exertional Malaise #LongCovid #PEM

Congratulations to Zoe Madden-Smith for winning the video journalist of the year award at the New Zealand media awards for her report on severe MECFS patients. Congratulations Zoe! And thank you for raising awareness of this debilitating condition. #mecfs #pwME

The Budget is out, and there is no allocation for Long Covid, despite the National Health Survey revealing that 4.3% of New Zealanders have Long Covid. Read our media release below. www.scoop.co.nz/stories/GE26...

We love to see online events!

New #longcovid article citing the dismal state of business-as-usual care for people with LC in New Zealand 🇳🇿

"Here’s the paradox: Long Covid is mainstream, yet invisible, with sufferers expected to self-manage" newsroom.co.nz/2026/05/14/t...

This is very welcome news. It will extend the initial findings from DecodeME at the University of Edinburgh, led by Prof Chris Ponting @cgatist.bsky.social #MECFS #LongCovid

I actually deteriorated over time, through following exercise, like many others with #MyalgicEncephalomyelitis. Improving or even stabilising is not the only possible outcome following an infection Plenty of research shows a significant percentage of those with #LongCovid satisfy #MECFS criteria 1/

Our #MECFS Awareness Symposium is starting now. The Symposium, “The Hidden Harm of “Trying Harder”, is being recorded and will be available on our website in the coming days.

"Dr Hana Ngata, a GP in regional Aotearoa, has seen a pattern emerging in her clinic since the COVID‑19 pandemic. Young people, kaumātua, parents, teachers – all describing the same strange mix of exhaustion, crashes after activity, dizziness, gut issues, and pain...

There's a new PHCC briefing out today on #longcovid in New Zealand www.phcc.org.nz/briefing/lon...

Huge. It doesn't have to be this way 😔

It is not good enough that Long Covid sufferers have to form support groups to get any kind of help. It is not good enough that Covid is still circulating leading to more Long Covid and we are not using the tools available to us, particularly clean air measures. www.rnz.co.nz/national/pro...

A reminder that long COVID isn't mild, & more you get COVID, the better your chances of having sequelae. "Acute COVID-19, regardless of Long COVID status, is linked to an increased risk of car crashes presumably due to neurologic changes caused by SARS-CoV-2." www.neurology.org/doi/10.1212/...

New Zealand 🇳🇿 www.rnz.co.nz/national/pro... #longcovid #chronicillness #mecfs

"New Zealand must take long COVID seriously. Denial of these impacts and delays in providing appropriate care mean New Zealand is missing opportunities to limit harms to individuals and society." #kikorangi #longcovid @amandakvalsvig.bsky.social theconversation.com/almost-200-0...

"Policymakers and the public are reluctant to even speak of Covid in the present tense, but the evidence shows it is still a major infectious disease in Aotearoa New Zealand, with wide-ranging negative impacts". #longcovid www.rnz.co.nz/news/on-the-...

New #media resource: #longcovid Explainer longcovidsupport.co.nz/wp-content/u...

Hi Denis! Long Covid Support Aotearoa here. There's one correction to that media piece - we've just let them know, should be updated soon 🙏 The survey was the Ministry of Health's annual New Zealand Health Survey - not ours.

Please listen to these powerful voices. This is what life is like for the thousands of us in Aotearoa living with Long COVID. Here is the link to the resource from Dr Mona Jeffreys from Victoria University of Wellington, which was sent to doctors Resource-for-GPs-2026.pdf #LongCovidAwareness

Scoop: NZ has rejected post-pandemic changes to the WHO's global health rules without providing a reason, making it one of just five countries to do so. "This is reputation-wrecking. People will think that we’ve lost our mind," says former PM Helen Clark. newsroom.co.nz/2026/03/18/n...

also: getting covid once is better than getting it twice. with each covid infection, your odds of getting long covid increases, and if you already have long covid, reinfection will likely make it worse

A woman with Long Covid has been left in a "no man's land" within the health system. The former Palmerston North city councillor contracted Covid in May 2022.

Listen: The personal face of the hundreds on thousands with Long Covid www.rnz.co.nz/national/pro...

Some recommended follows on this topic are: @lcsupportaotearoa.bsky.social, @covidactionnz.bsky.social, @covidsafenz.bsky.social, @cyncharron.bsky.social, @toolongcovid.bsky.social, @chrisjensenj.bsky.social Please add if there are others I’ve missed, and thanks to anyone amplifying regularly. 🙏

We're shining a light on Long Covid in Christchurch #longcovidawarenessday #longcovidawareness longcovidsupport.co.nz/news/shining-a-light-on-long-covid

This international Long Covid awareness day, I’m thinking about those who are still in the trenches. Those who aren’t centered in the press, those who started fighting in 2020 and haven’t stopped - for research, for policy, for support. Lived experience experts never called on for their expertise. 🧵

Not testing for Covid-19 is causing problems 🧪🧪

It's Long Covid Awareness Day. Thousands of New Zealanders have Long Covid affecting their ability to work, care for their families and do the things that bring them joy. So we stand in solidarity with all those struggling. www.longcovidsupport.co.nz #longcovid #longcovidawarenessday

PRESS RELEASE 250,000 Kiwis may have Long Covid but New Zealand isn't counting #longcovid #longcovidawareness #longcovidawarenessday #kiwi longcovidsupport.co.nz/news/250000-...

The Detail - As Covid hits again, Prof Michael Baker discusses what we can do and what more should be done. pocketcasts.com/podcasts/f98...

Sick and Tired Aotearoa: This episode acknowledges International Long Covid Awareness Day with Larisa Hockey, Chair of Long Covid Support Aotearoa and Louise Thornley, who has lived experience of chronic illness, including Long Covid.

Covid is still here. Every infection increases the risk of Long Covid.

I’ve been beating this drum, doing all I can towards this goal for a long time. The pushback, dismissive attitudes and wilful ignorance from schools is depressing and infuriating. No political parties in NZ are taking this seriously. I’m still convinced it’ll take legal action against a school.

With Aotearoa in its ninth wave, it is vital to stop Covid spreading in schools.

Preventing more #longcovid and preventing worsening of health baselines through prevention of repeated Covid infections is the other side of the coin

Covid Wave: Expert says everyone must 'act to reduce impact' www.rnz.co.nz/news/nationa...

Doctors are dismissing actual illness with an implication of mental illness. The actual research shows physical changes to the blood of those suffering from Long Covid. “Do No Harm”.

#longcovid #longcovidawarenessday #6years

POTS symptoms that are often missed ➡️ Dysautonomia / POTS is a huge and misunderstood part of #longcovid H/t The POTS Life on fb

#longcovid #longcovidkids #lcawarenessday

We need to keep talking about #longCOVID The collective amnesia/purposeful ignorance of long-COVID & about the long-term consequences of repeated SARS-COV-2 infection in general is embarrassing

Listen: Episode 8 from 27:55 on Quarantine Nation - Long Covid www.stuff.co.nz/nz-news/3609...

Thousands are still off work. People with Long Covid need work accommodations and access to supports and benefits. #longcovid #longcovidawarenessday #kiwi #nzpol

A doctor whose career ended after getting the virus says long Covid patients are being forgotten 6 years on there are "hundreds of thousands of people" in the UK with significant long Covid who could not work and were "not acknowledged," she says www.bbc.com/news/article...

Six years on from the first Covid cases, many people still have symptoms associated with Long Covid. We still need research. #longcovidawarenessday #longcovid

In the lead up to International Long Covid Awareness Day, we'll be sharing some key messages that our community want the public to know.

#longcovid can affect anyone who has had Covid 19, regardless of age or health Thanks to WHO Europe for the graphic.

🌐 We’re thrilled to launch the official webpage for #EmergeAustralia’s 2026 #LongCOVIDAwarenessWeek: Breaking Barriers, Building Support! Your go-to resource for the week! 🔗 View webpage here: zurl.co/oT4Ka#EmergeAustralia#LongCOVIDAwarenessWeekheck back often for updates & join us as we work together.