Last month I had the galactic honor of a lifetime to share remarks at Alice Wong's Celebration of Life. Today @thesicktimes.org published an extended version—which share how @sfdirewolf.bsky.social wielded Disability Justice to deliver #LongCovid advocacy's best moment (yet). /1

🧠 Clinical trial: non-invasive vagal nerve stimulation failed in improving fatigue 🫀 New study: compared two common types of dysautonomia 🇩🇪 German health insurance companies will cover four off-label drugs for Long COVID and related diseases #LongCOVID research updates: bit.ly/4ssQCoV

This OT led session will explore how #sensory processing and sensory input can affect fatigue, concentration and emotional regulation for young people with #LongCovid and provide strategies for management. www.longcovidkids.org/book-online #OccupationalTherapy #LongCovidKids @kirstyes.bsky.social

Join us on May 6 to celebrate the launch of Listening for the Long Haul, our new Long COVID oral history website! WEDS MAY 6 4:30-6:00pm ET Zoom Register: tiny.cc/lflh-launch

For me, the report this week from OECD on the global financial costs of Long Covid is a smoking gun. This isn’t about “the next pandemic.” It’s about the fact that the economic ruin we’re all racing toward and #LongCovid are the same thing. I explain why here: www.patreon.com/posts/covid-...

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...

I caught the tail end of this and it was very good. @amandakvalsvig.bsky.social did an excellent job

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

Sunrise, Thursday, 9 April, from Wainui Beach, Aotearoa / New Zealand. Ata mārie / Good Morning ☀️

Jono Ridler recently made it to Wellington...by SWIMMING there from NORTH CAPE, a 1400km journey. I loved getting to chat to him for this piece for @patagonia.com. Please sign his petition against bottom trawling! 🏊🐟 www.patagonia.co.nz/blogs/storie...

⚠️🌀🚨Cyclone Vaianu is likely to move across the North Island on Sunday. Uncertainty remains in the cyclone's exact track, so the locations of the most severe winds are not yet certain. 🟠🔴 📢 More information: metservice.com/warnings

OPINION: A high prevalence of long COVID is perhaps the starkest reminder that the pandemic is far from over. The latest New Zealand Health Survey confirms the impacts of the COVID pandemic continue, six years after the initial outbreak.  Read more⬇️

The prevalence of long COVID is more than a hundred times greater than the definition of a rare disease – yet there are no specific health services or support.

#LongCOVID 👇

The Conversation: "Almost 200,000 New Zealanders are now living with long COVID – where is the government plan?" 'New Zealand must take long COVID seriously' theconversation.com/almost-200-0...

Today @thesicktimes.org: Writer Jasper Brown describes how living with Long COVID and enduring climate collapse led him and his partner to move into a tiny home in the woods. (Accidentally a fitting story for today's news?) thesicktimes.org/2026/04/07/i...

Some excellent advice as usual from Toast 👇🧵 #nzpol

I really like this interview I did with the wonderful Emily Perkins about my memoir Night, Ma and the Glen Road Writers group. newsroom.co.nz/2026/04/08/e...

Ata mārie ⛈️ 🌧️ Rain affecting most parts of the North Island, with some heavy falls, especially in the central regions, including the northwestern ranges of Marlborough. 🟡 Check your severe weather updates at: www.metservice.com/warnings

I’ve written a short thread responding to Suzanne O’Sullivan’s claim that criticism of her books largely comes from “10 people on social media” highlighting responses from UK ME charities. twitter-thread.com/t/2041098446...

"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 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...

Almost 200,000 New Zealanders now living with long Covid - where is the government plan? A high prevalence of #longCovid is perhaps the starkest reminder that the pandemic is far from over. @amandakvalsvig.bsky.social www.rnz.co.nz/news/on-the-...

"Almost 200,000 New Zealanders are now living with long COVID" 🔹4 out 5 (77.7%) adults had COVID (~3.3 million people) 🔹1 out 11 (9.2%) adults report long COVID (~401,000) 🔹185,000 adults (4.3%) currently experiencing long COVID 🔹1 in 7 (14.9%) women vs 1 in 12 (8.5%) men having long COVID symptoms

An excellent article about the prevalence of long covid and the need to provide support for sufferers. There are fairly simple steps we can take to minimise transmission of all viruses in public spaces. Unfortunately, no one seems willing to implement any of them or acknowledge the issue of LC.

Managing symptoms day to day can feel overwhelming, but you don’t have to do it alone. This month’s Support Group is a space to share what’s helped, ask questions, and connect with others who understand. Join us Tuesday, April 7 💙 🔗 https://batemanhornecenter.org/events/

New paper in @thelancetinfdis.bsky.social from PLRC by @chloedecanson.bsky.social, @leticiasaurus.bsky.social, @chromatowski.bsky.social / @romatowski.bsky.social and Gina Assaf: "The case for routine patient review in #LongCovid research.” 🧵1/11

Science Politics: "What Long COVID Reveals About Fragmented Care" By Rosemary Morgan & Alba Azola 'Long COVID is not just a clinical challenge. It is a policy signal.' sciencepolitics.org/2026/04/06/w...

"Medical gaslighting is serious, harmful, and out of control: I’ve been working through what medical gaslighting is, how we should talk about it, & how it should be dealt with. Here’s where I’m at" by @kjohnstone.bsky.social mecfs.substack.com/p/medical-ga... #MedicalGaslighting #invisibleillness

🧵 Thoughtful blog post by someone with #LongCovid & #MEcfs. Initially focuses on describing the PEM effects of working 3 days in a row before discussing how the whole illness(es) & the effect it's having on his life is making him feel emotionally centerleftstack.substack.com/p/the-debt-c... #PEM 1/

Reminder: including alt-text on your images is helpful in many ways! It increases accessibility, can add context/detail, makes search more effective, & can improve your reach (a lot of us won’t re-share images without alt-text). If you set it as required in accessibility settings, you can’t forget!

Sunrise, Saturday, 4 April from Wainui Beach, Aotearoa / New Zealand. Ata mārie / Good Morning ☀️

Today's the day that the incredible Jono Ridler will complete his record breaking swim from North Cape to Wellington. 🏊‍♂️🏊‍♂️🏊‍♂️🏊‍♂️🏊‍♂️🏊‍♂️🏊‍♂️🏊‍♂️ Still time to sign his petition to get the Government to end bottom trawling on all seamounts – at home and in the high seas liveocean.org/swim4theocea...

New paper published today! ❤️ Improving Diagnostic Accuracy of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through a Point-of-Care Clinical Algorithm 🧪 🧵 www.mdpi.com/1660-4601/23...

Friday Night Chats is out and this one is FREE! I love free speech! www.emilywrites.co.nz/easter-long-...

Thrilled we have this new Comment out in @thelancetinfdis.bsky.social, arguing that to give Long COVID scientists more incentive to incorporate patient expertise throughout the research process, LC papers should all be subject to pre-publication review by patients. Free to read w/registration!

In an international survey (n=1534) www.mdpi.com/2075-4418/9/..., 67% of those with ME/CFS reported they never recovered from a crash (that caused postexertional malaise). Patients & professionals should be informed of this risk. Exertion has ruined some people's health #MEcfs #CFS #PwME #PEM

The Easter edition of The D*List Delivered In this week’s delicious edition: Accessible Egg Hunts Getting friends to care about COVID again 🤲

From The DList: Ideas on how to encourage people to care about Covid-19

@durhamhealthnc.bsky.social continues to model first class #PublicHealth messaging in the 7th year of an #OngoingPandemic, that most other public health departments everywhere else, continue to ignore -

"A body that turns on itself" 'Unmasking the hidden struggles of dysautonomia' 'The world measures illness by what it can see: the casts, the crutches, the scars. But dysautonomia reminds us that visibility is not the same as the truth.' By Anai Thomas scotscoop.com/a-body-that-...

The 4th Canadian Symposium on Long COVID is accepting artwork that reflects the lived experiences of #LongCOVID from individuals, families, & caregivers. All creative formats welcome. Submission deadline: July 15, 2026 (23:59 PT) Submit here: bit.ly/3Lflsln #LCWSymposium

The tens of millions of us w/ #MyalgicEncephalomyelitis & now the tens of millions more w/ #LongCovid can't launch an ACT UP-style protest--& I wish we could--b/c most of us are far too ill to get there. So here's what you need to know about this year's #MillionsMissing theme, Frail and Furious:

Share it around your circles so the correct message gets out #kikorangi #covid

And thank you to Marc and Newsroom for pursuing the story prompting recognition from Health NZ that their advice was confusing and resulting clarification being sent out. A piece of Public Good journalism.

Present fuel insecurity highlights how vulnerable Aotearoa New Zealand’s fuel supply is. Low-traffic neighbourhoods, bike lanes and e-bike programmes can reduce demand quickly and keep communities moving. #cycling #urbanplanning www.phcc.org.nz/briefing/rap...

Sunrise, Thursday, 2 April from Okitu Beach, Aotearoa / New Zealand. Some big sets out there. Ata mārie / Good Morning ☀️

EASTER SALE! Stuff's slow and everyone needs a treat, so I've popped a sale up on my store :3 🐝 All tees are 10% off 🐝 Enamel pins are 20% off 🐝 Stickers are buy 3 get 1 free <3 pepperraccoon.com

FYI today is a very special day! It’s the day when you can make a small business owner do a happy dance because you’re their first customer of the (financial) year. 💃🎉 If you’re a small business in Aotearoa, feel free to add a link to this thread too. The more first day sales the merrier!

Hundreds of people will be losing their jobs in the middle of a cost of living crisis. We've seen this pattern of local manufacturing shutting down across Aotearoa - and every time one of these factories closes, it's working people and their whānau who get left out in the cold. #nzpol