Dan the LC Kiwi
@longcovidkiwi.bsky.social
Kiwi/New Zealander 🇳🇿 with #LongCovid (since 01/06/2022). Former Ophthalmic Technician 👨⚕️.
Here to keep up with LC advocacy, LC news, and LC research updates. 📰😷🌏🩻❤️🩹🔬🥼
Here to keep up with LC advocacy, LC news, and LC research updates. 📰😷🌏🩻❤️🩹🔬🥼
Pinned
First Post:
Well, I’m finally in the process of leaving that “other place” (same @).
Hopeful that this platform is a better place (for me) to connect with the Long COVID community.
#LongCOVID #FBLC #Community
Well, I’m finally in the process of leaving that “other place” (same @).
Hopeful that this platform is a better place (for me) to connect with the Long COVID community.
#LongCOVID #FBLC #Community
As someone who is on SLP, thank you @drbex.bsky.social for writing this. It is time changes were made.
What if we did tho, what if we didn’t means test disabled people on the SLP and just paid it like we do for NZ Super? Not related to your partner’s income, not related to your income, and just, well, supported people?!
#nzpol
open.substack.com/pub/drbex/p/...
#nzpol
open.substack.com/pub/drbex/p/...
What if we paid the Supported Living Payment like we pay the pension?
A simple policy change that could dramatically lift disabled households out of poverty
open.substack.com
November 5, 2025 at 5:57 AM
As someone who is on SLP, thank you @drbex.bsky.social for writing this. It is time changes were made.
Reposted by Dan the LC Kiwi
ABC Net: 'Nurse among patients calling for better access to long COVID treatment'
'A Melbourne-based long COVID specialist says there's a long way to go in improving treatment for patients'
www.abc.net.au/news/2025-11...
'A Melbourne-based long COVID specialist says there's a long way to go in improving treatment for patients'
www.abc.net.au/news/2025-11...
Long COVID patients seeking help 'let down by the system'
Patients are calling for better access to long COVID care after the closure of one of the country's last public clinics.
www.abc.net.au
November 1, 2025 at 3:46 PM
ABC Net: 'Nurse among patients calling for better access to long COVID treatment'
'A Melbourne-based long COVID specialist says there's a long way to go in improving treatment for patients'
www.abc.net.au/news/2025-11...
'A Melbourne-based long COVID specialist says there's a long way to go in improving treatment for patients'
www.abc.net.au/news/2025-11...
Reposted by Dan the LC Kiwi
" #LongCOVID is underdiagnosed, researchers say, and there’s work to be done to change that":
www.cbc.ca/player/play/...
www.cbc.ca/player/play/...
Long COVID is underdiagnosed, researchers say, and there’s work to be done to change that
St. John’s hosted the 2025 Canadian Symposium on Long COVID earlier this month, a gathering of top researchers, clinicians, and people living with long COVID. As the CBC’s Adam Walsh reports, those on...
www.cbc.ca
November 1, 2025 at 2:44 PM
" #LongCOVID is underdiagnosed, researchers say, and there’s work to be done to change that":
www.cbc.ca/player/play/...
www.cbc.ca/player/play/...
Reposted by Dan the LC Kiwi
Remember each individual with MCAS is different and every single one of these doesn’t apply to everyone. For example, some people react very badly to many food triggers, others only have a few food triggers.
November 2, 2025 at 12:50 AM
Remember each individual with MCAS is different and every single one of these doesn’t apply to everyone. For example, some people react very badly to many food triggers, others only have a few food triggers.
Reposted by Dan the LC Kiwi
Medscape report on the IACFS/ME conference that took place last week:
"No Evidence Supports Using Graded Exercise for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome"
www.medscape.com/viewarticle/...
No mention of new data from new treatment trials here
#MEcfs #CFS #PwME
"No Evidence Supports Using Graded Exercise for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome"
www.medscape.com/viewarticle/...
No mention of new data from new treatment trials here
#MEcfs #CFS #PwME
November 1, 2025 at 8:32 PM
Medscape report on the IACFS/ME conference that took place last week:
"No Evidence Supports Using Graded Exercise for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome"
www.medscape.com/viewarticle/...
No mention of new data from new treatment trials here
#MEcfs #CFS #PwME
"No Evidence Supports Using Graded Exercise for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome"
www.medscape.com/viewarticle/...
No mention of new data from new treatment trials here
#MEcfs #CFS #PwME
Reposted by Dan the LC Kiwi
🏀 NBA player Kristaps Porziņģis said he was diagnosed with #POTS
COVID-19 has led to an enormous rise in cases, since POTS can be triggered by infections, but most mainstream media omitted any mention of COVID while contextualizing POTS in articles about Porziņģis.
thesicktimes.org/2025/10/25/n...
COVID-19 has led to an enormous rise in cases, since POTS can be triggered by infections, but most mainstream media omitted any mention of COVID while contextualizing POTS in articles about Porziņģis.
thesicktimes.org/2025/10/25/n...
NBA player Kristaps Porziņģis shares POTS diagnosis - The Sick Times
Earlier this week, professional basketball player Kristaps Porziņģis shared his diagnosis of postural orthostatic tachycardia syndrome (POTS). The 30-year-old player began facing severe health challen...
thesicktimes.org
October 25, 2025 at 7:50 PM
🏀 NBA player Kristaps Porziņģis said he was diagnosed with #POTS
COVID-19 has led to an enormous rise in cases, since POTS can be triggered by infections, but most mainstream media omitted any mention of COVID while contextualizing POTS in articles about Porziņģis.
thesicktimes.org/2025/10/25/n...
COVID-19 has led to an enormous rise in cases, since POTS can be triggered by infections, but most mainstream media omitted any mention of COVID while contextualizing POTS in articles about Porziņģis.
thesicktimes.org/2025/10/25/n...
Reposted by Dan the LC Kiwi
If you are fed up with social media suppressing info on Covid, other viruses and Long Covid, give this a like and repost. Let's make our voices be heard LOUD and clear all across everyone's feed!!
October 22, 2025 at 11:16 PM
If you are fed up with social media suppressing info on Covid, other viruses and Long Covid, give this a like and repost. Let's make our voices be heard LOUD and clear all across everyone's feed!!
Reposted by Dan the LC Kiwi
Only 20 years old
A sobering reminder that Covid is still with us, still killing & disabling
You may have gone “back to normal” but repeat infections just increase the risk
It’s a multi system vascular virus & ignoring it has devastating consequences
Get boosted. Wear a respirator. Clean the air
A sobering reminder that Covid is still with us, still killing & disabling
You may have gone “back to normal” but repeat infections just increase the risk
It’s a multi system vascular virus & ignoring it has devastating consequences
Get boosted. Wear a respirator. Clean the air
Evergreen Safeway unexpectedly loses two employees
The Evergreen Safeway lost two of its most beloved employees within only a few days this month.
www.canyoncourier.com
October 23, 2025 at 1:57 AM
Only 20 years old
A sobering reminder that Covid is still with us, still killing & disabling
You may have gone “back to normal” but repeat infections just increase the risk
It’s a multi system vascular virus & ignoring it has devastating consequences
Get boosted. Wear a respirator. Clean the air
A sobering reminder that Covid is still with us, still killing & disabling
You may have gone “back to normal” but repeat infections just increase the risk
It’s a multi system vascular virus & ignoring it has devastating consequences
Get boosted. Wear a respirator. Clean the air
Bloody smoke alarm going off again.
Oh wait, that’s just my tinnitus.
One of the many joys of #LongCovid
Oh wait, that’s just my tinnitus.
One of the many joys of #LongCovid
October 14, 2025 at 3:21 AM
Bloody smoke alarm going off again.
Oh wait, that’s just my tinnitus.
One of the many joys of #LongCovid
Oh wait, that’s just my tinnitus.
One of the many joys of #LongCovid
In another #PEM crash. Have hardly left my bed in 1.5 days. I hate feeling like this. My mind is trying to tell me there will never be a treatment. I just hope I am wrong. #LongCovid #PEM
October 13, 2025 at 1:01 PM
In another #PEM crash. Have hardly left my bed in 1.5 days. I hate feeling like this. My mind is trying to tell me there will never be a treatment. I just hope I am wrong. #LongCovid #PEM
Reposted by Dan the LC Kiwi
The devastating impact of Long COVID on young people in Aotearoa
Watch the 16 min video in the article below
#LongCovid
#LongCovidAwareness
#CovidIsNotOver
Watch the 16 min video in the article below
#LongCovid
#LongCovidAwareness
#CovidIsNotOver
Offered rest home care at 24: the lonely plight of young Kiwis with long Covid
A group of young Kiwis prove what international studies show: that long Covid has a particularly debilitating effect on young people. But how much medical support is there for them?
www.1news.co.nz
October 9, 2025 at 9:04 PM
The devastating impact of Long COVID on young people in Aotearoa
Watch the 16 min video in the article below
#LongCovid
#LongCovidAwareness
#CovidIsNotOver
Watch the 16 min video in the article below
#LongCovid
#LongCovidAwareness
#CovidIsNotOver
Reposted by Dan the LC Kiwi
Patients with COVID had a higher risk of developing double vision (diplopia) and cranial nerve VI palsy than those with influenza.
mRNA vaccination cut the risk of posterior eye complications—like retinal swelling, optic neuritis, and vitreous bleeding—by over 30%.
Source: archive.md/sKZJj
mRNA vaccination cut the risk of posterior eye complications—like retinal swelling, optic neuritis, and vitreous bleeding—by over 30%.
Source: archive.md/sKZJj
October 8, 2025 at 10:04 PM
Patients with COVID had a higher risk of developing double vision (diplopia) and cranial nerve VI palsy than those with influenza.
mRNA vaccination cut the risk of posterior eye complications—like retinal swelling, optic neuritis, and vitreous bleeding—by over 30%.
Source: archive.md/sKZJj
mRNA vaccination cut the risk of posterior eye complications—like retinal swelling, optic neuritis, and vitreous bleeding—by over 30%.
Source: archive.md/sKZJj
Reposted by Dan the LC Kiwi
University of Iowa scientists studied 12 people 32 months after COVID and found that reduced lung gas exchange was tied to poorer sleep, higher brain blood flow, and weaker executive function, suggesting lasting lung–brain links in Long COVID.
www.researchsquare.com/article/rs-7...
www.researchsquare.com/article/rs-7...
Long COVID: Lung Pathophysiology and its Relationship with Cognitive Dysfunction
Post-acute sequelae of COVID-19 (Long COVID) includes physical and cognitive symptoms that can last long after acute infection. Links between lung pathophysiology and cognitive dysfunction in Long COV...
www.researchsquare.com
October 8, 2025 at 6:06 PM
University of Iowa scientists studied 12 people 32 months after COVID and found that reduced lung gas exchange was tied to poorer sleep, higher brain blood flow, and weaker executive function, suggesting lasting lung–brain links in Long COVID.
www.researchsquare.com/article/rs-7...
www.researchsquare.com/article/rs-7...
Reposted by Dan the LC Kiwi
French pharmacies run out of Covid tests as cases soar.
Up to 150,000 COVID ‘auto-tests’ were sold last week amid a surge linked to the new XFG variant.
Self-tests give results in 15 mins but are only ~70% accurate, meaning 3 in 10 positive cases could be missed.
Source: archive.md/52Qfc
Up to 150,000 COVID ‘auto-tests’ were sold last week amid a surge linked to the new XFG variant.
Self-tests give results in 15 mins but are only ~70% accurate, meaning 3 in 10 positive cases could be missed.
Source: archive.md/52Qfc
October 7, 2025 at 11:09 PM
French pharmacies run out of Covid tests as cases soar.
Up to 150,000 COVID ‘auto-tests’ were sold last week amid a surge linked to the new XFG variant.
Self-tests give results in 15 mins but are only ~70% accurate, meaning 3 in 10 positive cases could be missed.
Source: archive.md/52Qfc
Up to 150,000 COVID ‘auto-tests’ were sold last week amid a surge linked to the new XFG variant.
Self-tests give results in 15 mins but are only ~70% accurate, meaning 3 in 10 positive cases could be missed.
Source: archive.md/52Qfc
Reposted by Dan the LC Kiwi
AI data centres are gobbling up environmental resources.
Billionaires are flying around on private jets.
Endless amounts of money & resources spent on wars around the globe.
But inhalers are the real threat to the climate?
They really will blame disabled people for everything
Billionaires are flying around on private jets.
Endless amounts of money & resources spent on wars around the globe.
But inhalers are the real threat to the climate?
They really will blame disabled people for everything
October 8, 2025 at 3:37 AM
AI data centres are gobbling up environmental resources.
Billionaires are flying around on private jets.
Endless amounts of money & resources spent on wars around the globe.
But inhalers are the real threat to the climate?
They really will blame disabled people for everything
Billionaires are flying around on private jets.
Endless amounts of money & resources spent on wars around the globe.
But inhalers are the real threat to the climate?
They really will blame disabled people for everything
Reposted by Dan the LC Kiwi
mRNA COVID-19 vaccines don’t cause cancer.
Anyone who says otherwise doesn’t understand immunology, vaccinology, or how to interpret studies.
Hope this helps!
Anyone who says otherwise doesn’t understand immunology, vaccinology, or how to interpret studies.
Hope this helps!
October 8, 2025 at 12:45 AM
mRNA COVID-19 vaccines don’t cause cancer.
Anyone who says otherwise doesn’t understand immunology, vaccinology, or how to interpret studies.
Hope this helps!
Anyone who says otherwise doesn’t understand immunology, vaccinology, or how to interpret studies.
Hope this helps!
Reposted by Dan the LC Kiwi
Can’t believe this news broke on the same day that a separate but equally qualified group of experts proved that electricity and trees are in fact also…. Real. What a day for science.
PS these are the same fools who were ripping on Violet Affleck for bringing attention to Long Covid last week.
PS these are the same fools who were ripping on Violet Affleck for bringing attention to Long Covid last week.
October 8, 2025 at 12:05 AM
Can’t believe this news broke on the same day that a separate but equally qualified group of experts proved that electricity and trees are in fact also…. Real. What a day for science.
PS these are the same fools who were ripping on Violet Affleck for bringing attention to Long Covid last week.
PS these are the same fools who were ripping on Violet Affleck for bringing attention to Long Covid last week.
Reposted by Dan the LC Kiwi
💙 People across the UK are still living with Long Covid — their stories show why clean, safe air matters for everyone.
📖 Read and support the call for #SafeAir4All.
Read More Here: shh-uk.org/angelas-l...
#LongCovid #SHHUK #longcovidawareness #longcovidrecovery #publichealth
📖 Read and support the call for #SafeAir4All.
Read More Here: shh-uk.org/angelas-l...
#LongCovid #SHHUK #longcovidawareness #longcovidrecovery #publichealth
October 5, 2025 at 8:08 PM
💙 People across the UK are still living with Long Covid — their stories show why clean, safe air matters for everyone.
📖 Read and support the call for #SafeAir4All.
Read More Here: shh-uk.org/angelas-l...
#LongCovid #SHHUK #longcovidawareness #longcovidrecovery #publichealth
📖 Read and support the call for #SafeAir4All.
Read More Here: shh-uk.org/angelas-l...
#LongCovid #SHHUK #longcovidawareness #longcovidrecovery #publichealth
Reposted by Dan the LC Kiwi
SARS-CoV-2 is airborne. It spreads and can linger in the air, a bit like cigarette smoke. High quality masks/respirators are critical to prevent infection from this dangerous SARS virus and other airborne pathogens
October 5, 2025 at 1:36 PM
SARS-CoV-2 is airborne. It spreads and can linger in the air, a bit like cigarette smoke. High quality masks/respirators are critical to prevent infection from this dangerous SARS virus and other airborne pathogens
Reposted by Dan the LC Kiwi
Japan: "Okayama study underscores risk of long COVID, new variant"
Of the 774 long COVID Omicron patients, 370 were in the ‘early recovery group’ (within 6 months). The other 404 (52%) had symptoms 180+ days, with some lasting 2–3 years. Women made up about 60% of this persistent group.
#LongCOVID
Of the 774 long COVID Omicron patients, 370 were in the ‘early recovery group’ (within 6 months). The other 404 (52%) had symptoms 180+ days, with some lasting 2–3 years. Women made up about 60% of this persistent group.
#LongCOVID
Okayama study underscores risk of long COVID, new variant | The Asahi Shimbun: Breaking News, Japan News and Analysis
OKAYAMA--More than half of patients who visited Okayama University Hospital’s COVID-19 aftercare (CAC) outpatient clinic continued follow-up treatments for 180 days or more, a group of researchers sai...
www.asahi.com
October 2, 2025 at 11:16 PM
Japan: "Okayama study underscores risk of long COVID, new variant"
Of the 774 long COVID Omicron patients, 370 were in the ‘early recovery group’ (within 6 months). The other 404 (52%) had symptoms 180+ days, with some lasting 2–3 years. Women made up about 60% of this persistent group.
#LongCOVID
Of the 774 long COVID Omicron patients, 370 were in the ‘early recovery group’ (within 6 months). The other 404 (52%) had symptoms 180+ days, with some lasting 2–3 years. Women made up about 60% of this persistent group.
#LongCOVID
Reposted by Dan the LC Kiwi
TIME: “Repeat COVID-19 Infections Could Double Your Risk of Long COVID”
‘In the largest Long COVID study of young people to date, scientists led by a team at the University of Pennsylvania..’
time.com/7322188/covi...
‘In the largest Long COVID study of young people to date, scientists led by a team at the University of Pennsylvania..’
time.com/7322188/covi...
Repeat COVID-19 Infections Could Double Your Risk of Long COVID
The latest study shows that getting repeat COVID-19 infections can come at a high health cost.
time.com
October 3, 2025 at 4:20 AM
TIME: “Repeat COVID-19 Infections Could Double Your Risk of Long COVID”
‘In the largest Long COVID study of young people to date, scientists led by a team at the University of Pennsylvania..’
time.com/7322188/covi...
‘In the largest Long COVID study of young people to date, scientists led by a team at the University of Pennsylvania..’
time.com/7322188/covi...
Reposted by Dan the LC Kiwi
Scientists Finally Reveal Biological Basis of Long COVID Brain Fog.
Patients with brain fog may have disrupted AMPA receptor (AMPAR) expression—key molecules for memory and learning. Imaging of Long COVID patients showed elevated AMPAR density tied to more severe cognitive impairment.
Patients with brain fog may have disrupted AMPA receptor (AMPAR) expression—key molecules for memory and learning. Imaging of Long COVID patients showed elevated AMPAR density tied to more severe cognitive impairment.
Scientists Finally Reveal Biological Basis of Long COVID Brain Fog
Researchers employed a specialized brain imaging technique to identify a potential biomarker and therapeutic target for Long COVID. More than four years after the onset of the COVID-19 pandemic, scien...
scitechdaily.com
October 1, 2025 at 11:14 PM
Scientists Finally Reveal Biological Basis of Long COVID Brain Fog.
Patients with brain fog may have disrupted AMPA receptor (AMPAR) expression—key molecules for memory and learning. Imaging of Long COVID patients showed elevated AMPAR density tied to more severe cognitive impairment.
Patients with brain fog may have disrupted AMPA receptor (AMPAR) expression—key molecules for memory and learning. Imaging of Long COVID patients showed elevated AMPAR density tied to more severe cognitive impairment.
Couch day today. In another #PEM crash. My crime? Having a friend over for 2 hours yesterday.
I knew she was coming so I rested both before and after her visit. But it wasn’t enough to prevent a crash.
At least I have two doggies keeping me company. #LongCovid
I knew she was coming so I rested both before and after her visit. But it wasn’t enough to prevent a crash.
At least I have two doggies keeping me company. #LongCovid
October 1, 2025 at 11:02 PM
Couch day today. In another #PEM crash. My crime? Having a friend over for 2 hours yesterday.
I knew she was coming so I rested both before and after her visit. But it wasn’t enough to prevent a crash.
At least I have two doggies keeping me company. #LongCovid
I knew she was coming so I rested both before and after her visit. But it wasn’t enough to prevent a crash.
At least I have two doggies keeping me company. #LongCovid
Reposted by Dan the LC Kiwi
Stanford Magazine: 'From Smell Loss to Brain Fog | Unpacking the Long COVID Puzzle'
“There’s no confirmatory test, no single fix, and no specialty that fully owns this condition..it’s deeply frustrating for both patients and providers.” - Lauren Grossman, MD
medicine.stanford.edu/news/current...
“There’s no confirmatory test, no single fix, and no specialty that fully owns this condition..it’s deeply frustrating for both patients and providers.” - Lauren Grossman, MD
medicine.stanford.edu/news/current...
From Smell Loss to Brain Fog: Unpacking the Long COVID Puzzle
Highlights from Stanford’s 2025 Long COVID symposium reveal new insights on smell loss, migraines, gut health, blood changes, and whole-person care.
medicine.stanford.edu
October 1, 2025 at 8:53 PM
Stanford Magazine: 'From Smell Loss to Brain Fog | Unpacking the Long COVID Puzzle'
“There’s no confirmatory test, no single fix, and no specialty that fully owns this condition..it’s deeply frustrating for both patients and providers.” - Lauren Grossman, MD
medicine.stanford.edu/news/current...
“There’s no confirmatory test, no single fix, and no specialty that fully owns this condition..it’s deeply frustrating for both patients and providers.” - Lauren Grossman, MD
medicine.stanford.edu/news/current...
Reposted by Dan the LC Kiwi
Welcome to Heaven, Dr. Jane Goodall. You made the world a better place.
October 1, 2025 at 8:46 PM
Welcome to Heaven, Dr. Jane Goodall. You made the world a better place.