Long Covid Support Aotearoa

We aim to bring forward the lived experience of patients to help others and the wider community connect with information that is relatable and useful.

[Long Covid Support Aotearoa @lcsaotearoa]

The Long Covid Registry research shows that Long Covid sufferers have a lower quality of life than MS and cancer patients.

LCSA aims to support sufferers, raise awareness, and advocate for recognition and research.

https://t.co/NOyoaEIOKP
#LongCovid #NewZealand

[Long Covid Support Aotearoa @lcsaotearoa]

@rnz Thank you to sitting MPs for
ACT @actparty
Green Party @NZGreens
New Zealand First @nzfirst @nzfirst⁠
New Zealand Labour Party @nzlabour
And
Opportunity (formerly TOP) leader @top_nz

Apologies received from Te Pati Māori.

National failed to respond
@National

[Long Covid Support Aotearoa @lcsaotearoa]

Our political panel on Chronic Illness raised awareness of the gaps in Support and created an encouraging discussion with politicians.

Now to follow up.

Thank you to @RNZ for this coverage.

https://t.co/HLOZ2D3r6u

[Lou Thornley @Lou_vs_ME]

Five NZ politicians attended a panel chat on Long Covid & ME/CFS today
- TPM sent apologies, National didn't respond

Nice coverage from RNZ

Panel discussion can still be viewed here (will also be posted to YouTube soon) https://t.co/77j7YiTjyg

https://t.co/E78XZdGKme

[Long Covid Support Aotearoa @lcsaotearoa]

Join us live, or watch later. https://t.co/42JCi8mXC7

[Long Covid Support Aotearoa @lcsaotearoa]

Chronic Illness political panel.
10am Monday 10 August.
What do our candidates have to say about the future of chronic illness support in Aotearoa New Zealand?
#longcovid #mecfs #Election2026

[Long Covid Support Aotearoa @lcsaotearoa]

Research from Victoria University NZ show that half of respondents with LC or MECFS suffered from food insecurity at some stage in the previous year.

More evidence that Long Covid and MECFS sufferers need support.

https://t.co/lr5ZpMPv5V

[Lou Thornley @Lou_vs_ME]

Health wasn't a winner in NZ Budget
- just keeping pace w inflation & current settings isn't winning

- underinvestment is losing

= bad news for all of us
https://t.co/7ut7soSaCC

[Long Covid Support Aotearoa @lcsaotearoa]

The Government's budget is out and there is no funding for Long Covid, despite the fact thst The National Health Survey reveals thst 4.3 % of New Zealanders have Long Covid. Read our media release here.
https://t.co/k4RluULZFu

[Long Covid Support Aotearoa @lcsaotearoa]

While research in this area is just beginning, it is encouraging to see new breakthroughs or leads in the understanding of MECFS. As approx 60% of LC patients qualify for a diagnosis of MECFS this kind of information is valuable.

[ME/CFS Science @mecfsskeptic]

1) There's an interesting lead in the ME/CFS genetic data: the eccentric medium spiny neuron (eMSN), a cell type in the brain discovered only a couple of years ago.

All based on preliminary findings, but the data looks rather interesting.

[Long Covid Support Aotearoa @lcsaotearoa]

@mecfsskeptic Thank you for making complicated information understandable.

[The Sick Times @thesicktimes]

A “unifying” hypothesis of the mechanisms, triggers, and risk factors for myalgic encephalomyelitis (ME), is gaining support. Further evaluation and development of a potential drug depend on funding. https://t.co/b7d7zNy9I1

[Jess @MeetJess]

Inflamed Blood Vessels Appear to be Causing Brain Fog in Long COVID https://t.co/regjxNkYsb

[Dara in Chains @DarainChains]

Invisible Warfare

Headline: The MIT Study that Finally Visualizes the Brain-on-COVID

Have you ever had a medical scan come back "clear" while your brain felt like it was made of inflamed concrete? You aren't crazy. Standard medicine just wasn't looking small enough.
A major 2026 paper from MIT and Harvard just changed the game. They didn't just look at brain tissue; they physically expanded it 15-20x its size—like using a molecular magnifying glass—to achieve 20-nanometer resolution.

What they found changes everything:

Standard imaging looks for damage. This paper visualized defense.

Deep inside the brains of people who had SC2, they found periodic Amyloid Nanoclusters co-localizing directly with the virus.

What does that mean?

The Cargo: Your body is running on infected, hyper-activated platelets (the 'weaponized platelets' of LC). They carry viral debris and proteins into the brain's capillaries.
The Body's Defense: When the brain detects these viral invaders, it doesn't wait. Its immune system (microglia/astrocytes) triggers a protective, antimicrobial "foam" called amyloid-beta.

The Trap: This amyloid foam physically traps, cages, and neutralizes the viral proteins to stop them from causing further harm.
The Price: The paper found a 2-fold increase in activated astrocytes, the cells that manage the brain's environment. These dense, sticky amyloid traps and swollen astrocytes create a state of permanent, local, architectural neuroinflammation.

This isn't a "chemical imbalance." This is structural warfare. The brain is filled with tiny, persistent defensive knots that it cannot clear, causing the profound fatigue, cognitive impairment, and severe inflammation so common in LC.

#LongCOVID #Neuroinflammation #Microbiome #VigilanceLab

A comic showing this! Hope this helps my friends and fellow humans.

[Long Covid Support Aotearoa @lcsaotearoa]

Covid is still dangerous. 👇

[Jerome Adams @JeromeAdamsMD]

Reminder: Long COVID's disability & suffering will be the pandemic's most devastating long-term global legacy. Neither GBD supporters nor critics anticipated its scale or included it in their policy calculus -and “let er rip” strategies prioritizing widespread exposure clearly worsen the toll. Millions affected, with real costs in lives and productivity (on top of 20 million direct deaths globally, which we should never forget or minimize). https://t.co/I48h2XxxfS

[Cat in the Hat 🐈‍⬛ 🎩 🇬🇧 @_CatintheHat]

🚨“Why COVID could be to blame for the rise in deadly meningitis”

“When people regularly catch Meningitis B bacteria, they usually live harmlessly in the nose.”

“The problem is that COVID may have made our cells more susceptible to the bacteria.”

https://t.co/APskCrYVni

[Ali Max Erturk @erturklab]

Main Finding 7: Strikingly, we found spike accumulation in ~60% of people who had COVID-19 in the past long after their recovery. Thus, the identified spike in the human skull beyond the viral detection time might be a co-factor in developing long-term COVID-19 symptoms.

[Denis - The COVID info guy - @BigBadDenis]

"Dutch Health Council urges government action on long Covid"

The Dutch Health Council says around 400,000 people in the Netherlands may have long Covid, many with severe symptoms. Debate continues over whether long Covid treatment should be fully included in regular healthcare.

[BirdieBittern @BirdieBittern]

Covid-19 death toll far higher than official numbers, says WHO

The global health agency has estimated that around 22.1 million excess deaths occurred worldwide between 2020 and 2023 because of the pandemic and its indirect effects.

https://t.co/asWpUAtYRY