Jo
@sepfieldpatient.bsky.social
Chronically ill (CVID, adrenal insufficiency, autoimmune diseases, and the rest), sometimes a maker of things…
Reposted by Jo
My fave is when they call it "pacing up" your activity 😭
December 17, 2025 at 8:32 PM
My fave is when they call it "pacing up" your activity 😭
Reposted by Jo
I'd name and shame, but quite clearly none of us would recognize literally any of these people, because they don't recognize us :)
Still, I recommend clicking on the protocol itself and branding those names into your brain. And when you do, if any of them reach out to you, let them know what's up.
Still, I recommend clicking on the protocol itself and branding those names into your brain. And when you do, if any of them reach out to you, let them know what's up.
December 17, 2025 at 8:01 PM
I'd name and shame, but quite clearly none of us would recognize literally any of these people, because they don't recognize us :)
Still, I recommend clicking on the protocol itself and branding those names into your brain. And when you do, if any of them reach out to you, let them know what's up.
Still, I recommend clicking on the protocol itself and branding those names into your brain. And when you do, if any of them reach out to you, let them know what's up.
Reposted by Jo
Those who designed the protocol are also unfamiliar with PEM, though they claim to measure it. They seem to believe you can spot PEM by asking subjective effort questions during activity, despite the fact that PEM symptoms have a characteristic, often 24hr delay between trigger and onset.
December 17, 2025 at 8:01 PM
Those who designed the protocol are also unfamiliar with PEM, though they claim to measure it. They seem to believe you can spot PEM by asking subjective effort questions during activity, despite the fact that PEM symptoms have a characteristic, often 24hr delay between trigger and onset.
Reposted by Jo
In a real study with "Zelen design", researchers obtain informed consent from subjects after ✨randomization✨.
However, in THIS study, they're only obtaining informed consent after ✨the study is complete✨. They have the audacity to call this a "modified" Zelen design.
However, in THIS study, they're only obtaining informed consent after ✨the study is complete✨. They have the audacity to call this a "modified" Zelen design.
December 17, 2025 at 8:01 PM
In a real study with "Zelen design", researchers obtain informed consent from subjects after ✨randomization✨.
However, in THIS study, they're only obtaining informed consent after ✨the study is complete✨. They have the audacity to call this a "modified" Zelen design.
However, in THIS study, they're only obtaining informed consent after ✨the study is complete✨. They have the audacity to call this a "modified" Zelen design.
Reposted by Jo
At today's talk, I touched on deception in activity management. Some-- often new to the field / to PEM-- will deceptively call their graded exercise program pacing.
Then, I stumbled across this from @sunsopeningband.bsky.social and it's actually worse. 🧪 🧵
bmjopen.bmj.com/content/15/1...
Then, I stumbled across this from @sunsopeningband.bsky.social and it's actually worse. 🧪 🧵
bmjopen.bmj.com/content/15/1...
Pursuing Reduction in Fatigue After COVID-19 via Exercise and Rehabilitation (PREFACER): a protocol for a randomised feasibility trial
Introduction Over 777 million COVID-19 infections have occurred globally, with data suggesting that 10%–20% of those infected develop Long COVID. Fatigue is one of the most common and disabling sympto...
bmjopen.bmj.com
December 17, 2025 at 8:01 PM
At today's talk, I touched on deception in activity management. Some-- often new to the field / to PEM-- will deceptively call their graded exercise program pacing.
Then, I stumbled across this from @sunsopeningband.bsky.social and it's actually worse. 🧪 🧵
bmjopen.bmj.com/content/15/1...
Then, I stumbled across this from @sunsopeningband.bsky.social and it's actually worse. 🧪 🧵
bmjopen.bmj.com/content/15/1...
Reposted by Jo
I am convinced in the future we will look back and realise the sheer unimaginable folly of letting a virus that can cause immune dysregulation and cognitive dysfunction in humans infect and re-infect the global population over and over again. Worse still, that we encouraged it.
December 18, 2025 at 12:12 AM
I am convinced in the future we will look back and realise the sheer unimaginable folly of letting a virus that can cause immune dysregulation and cognitive dysfunction in humans infect and re-infect the global population over and over again. Worse still, that we encouraged it.
Reposted by Jo
This weeks respiratory surveillance report in NSW makes interesting and concerning reading
Influenza level is rising and is now at High
COVID is at low levels but test positivity is increased
🧵
Influenza level is rising and is now at High
COVID is at low levels but test positivity is increased
🧵
www.health.nsw.gov.au
December 18, 2025 at 1:08 AM
This weeks respiratory surveillance report in NSW makes interesting and concerning reading
Influenza level is rising and is now at High
COVID is at low levels but test positivity is increased
🧵
Influenza level is rising and is now at High
COVID is at low levels but test positivity is increased
🧵
Reposted by Jo
Wow, 75 of you so far!
It's not too late to register for this talk tomorrow, which is sliding scale, pay-as-you're-able. 20% of proceeds will go to #MEAction.
Click on the post below to learn more!
It's not too late to register for this talk tomorrow, which is sliding scale, pay-as-you're-able. 20% of proceeds will go to #MEAction.
Click on the post below to learn more!
I'm giving a talk next week and you're invited!
✨Improving Quality of Life in ME/CFS and Infection-Associated Chronic Conditions✨
The talk is donate-as-you're-able, and 20% will support #MEAction.
You can sign up to attend here: us06web.zoom.us/meeting/regi...
✨Improving Quality of Life in ME/CFS and Infection-Associated Chronic Conditions✨
The talk is donate-as-you're-able, and 20% will support #MEAction.
You can sign up to attend here: us06web.zoom.us/meeting/regi...
December 16, 2025 at 2:21 PM
Wow, 75 of you so far!
It's not too late to register for this talk tomorrow, which is sliding scale, pay-as-you're-able. 20% of proceeds will go to #MEAction.
Click on the post below to learn more!
It's not too late to register for this talk tomorrow, which is sliding scale, pay-as-you're-able. 20% of proceeds will go to #MEAction.
Click on the post below to learn more!
Reposted by Jo
"Deficiencies of vitamin B12, folic acid, copper, and vitamin E may lead to myeloneuropathy with a clinical picture of subacute combined degeneration of the spinal cord."
bsky.app/profile/rene...
bsky.app/profile/rene...
"Deficiencies of vitamin B12, folic acid, copper, and vitamin E may lead to myeloneuropathy with a clinical picture of subacute combined degeneration of the spinal cord."
December 16, 2025 at 3:37 PM
"Deficiencies of vitamin B12, folic acid, copper, and vitamin E may lead to myeloneuropathy with a clinical picture of subacute combined degeneration of the spinal cord."
bsky.app/profile/rene...
bsky.app/profile/rene...
Reposted by Jo
I don’t see anybody in Australia calling for more guns.
I’m guessing cos Australians don’t like getting shot.
Overseas commentary esp on X is frankly ridiculous.
I’m guessing cos Australians don’t like getting shot.
Overseas commentary esp on X is frankly ridiculous.
December 16, 2025 at 9:10 PM
I don’t see anybody in Australia calling for more guns.
I’m guessing cos Australians don’t like getting shot.
Overseas commentary esp on X is frankly ridiculous.
I’m guessing cos Australians don’t like getting shot.
Overseas commentary esp on X is frankly ridiculous.
Reposted by Jo
Correlation Between Activity Level of Renin-Angiotensin-Aldosterone System & Perfusion Index (PI) in Children with POTS
www.tandfonline.com/doi/full/10....
Kids with POTS:
↓ PI
↑ Angiotensin 2 (ANGII)
PI could predict POTS more accurately than ANGII
www.tandfonline.com/doi/full/10....
Kids with POTS:
↓ PI
↑ Angiotensin 2 (ANGII)
PI could predict POTS more accurately than ANGII
Correlation Between Activity Level of Renin-Angiotensin-Aldosterone System and Perfusion Index in Children with Postural Tachycardia Syndrome
To evaluate the relationship between Renin-Angiotensin-Aldosterone System (RAAS) activity and Perfusion Index (PI) in children with Postural Tachycardia Syndrome (POTS), and to assess the diagnosti...
www.tandfonline.com
December 16, 2025 at 10:23 PM
Correlation Between Activity Level of Renin-Angiotensin-Aldosterone System & Perfusion Index (PI) in Children with POTS
www.tandfonline.com/doi/full/10....
Kids with POTS:
↓ PI
↑ Angiotensin 2 (ANGII)
PI could predict POTS more accurately than ANGII
www.tandfonline.com/doi/full/10....
Kids with POTS:
↓ PI
↑ Angiotensin 2 (ANGII)
PI could predict POTS more accurately than ANGII
Reposted by Jo
Hey @jimchalmers.bsky.social. Why not focus on #AUKUS spending and switch away from an unaffordable ‘best’ submarine capability that won’t be delivered to an affordable ‘adequate’ submarine capability that will be delivered? #auspol
December 16, 2025 at 10:25 PM
Hey @jimchalmers.bsky.social. Why not focus on #AUKUS spending and switch away from an unaffordable ‘best’ submarine capability that won’t be delivered to an affordable ‘adequate’ submarine capability that will be delivered? #auspol
Reposted by Jo
Two people committed a horrible, violent act
Hundreds of people with one shared humanity did wonderful things
“Singh-Bola said it was important for people to support one another in the coming weeks and to understand that you "can't fight hate with hate"
Hundreds of people with one shared humanity did wonderful things
“Singh-Bola said it was important for people to support one another in the coming weeks and to understand that you "can't fight hate with hate"
Amandeep ate a kebab as the sun set — then helped stop one of the alleged Bondi shooters — SBS News
One of the many heroes who sprang into action after Sunday's attack says
apple.news
December 16, 2025 at 10:32 PM
Two people committed a horrible, violent act
Hundreds of people with one shared humanity did wonderful things
“Singh-Bola said it was important for people to support one another in the coming weeks and to understand that you "can't fight hate with hate"
Hundreds of people with one shared humanity did wonderful things
“Singh-Bola said it was important for people to support one another in the coming weeks and to understand that you "can't fight hate with hate"
Reposted by Jo
There is always a leader.
When public health steps aside like this, the most powerful voice in the room steps in.
Big corporations. Dark money. Your Uncle that got his data from “trust me bro” sources.
#PublicHealth
When public health steps aside like this, the most powerful voice in the room steps in.
Big corporations. Dark money. Your Uncle that got his data from “trust me bro” sources.
#PublicHealth
“Assess your own risk” was the most anti-public health slogan any public health official ever dreamed up.
December 15, 2025 at 8:55 AM
There is always a leader.
When public health steps aside like this, the most powerful voice in the room steps in.
Big corporations. Dark money. Your Uncle that got his data from “trust me bro” sources.
#PublicHealth
When public health steps aside like this, the most powerful voice in the room steps in.
Big corporations. Dark money. Your Uncle that got his data from “trust me bro” sources.
#PublicHealth
Reposted by Jo
6. From these conversations, it seems obvious that public health needs to communicate the effectiveness of FFP2 masks, that vaccination is highly beneficial even if someone gets the flu, and that antiviral medication is available.
/end
/end
December 15, 2025 at 1:01 PM
6. From these conversations, it seems obvious that public health needs to communicate the effectiveness of FFP2 masks, that vaccination is highly beneficial even if someone gets the flu, and that antiviral medication is available.
/end
/end
Reposted by Jo
1. As a result of the current high prevalence of influenza and the accompanying media coverage of the spread of the disease, I've been asked about mitigations by a number of friends who take *no precautions against SARS-CoV-2*. A few observations regarding these conversations:
December 15, 2025 at 1:01 PM
1. As a result of the current high prevalence of influenza and the accompanying media coverage of the spread of the disease, I've been asked about mitigations by a number of friends who take *no precautions against SARS-CoV-2*. A few observations regarding these conversations:
Reposted by Jo
Can your voice influence clean air policy? Yes!
Last month at our Safer shared air event at Parliament House, Dr Amanda Cohn announced an Inquiry into clean indoor air - submissions are open now!
Visit the Inquiry page to learn more 🔗 bit.ly/nsw-inq
Submissions close 29th January 2026.
Last month at our Safer shared air event at Parliament House, Dr Amanda Cohn announced an Inquiry into clean indoor air - submissions are open now!
Visit the Inquiry page to learn more 🔗 bit.ly/nsw-inq
Submissions close 29th January 2026.
December 16, 2025 at 12:13 AM
Can your voice influence clean air policy? Yes!
Last month at our Safer shared air event at Parliament House, Dr Amanda Cohn announced an Inquiry into clean indoor air - submissions are open now!
Visit the Inquiry page to learn more 🔗 bit.ly/nsw-inq
Submissions close 29th January 2026.
Last month at our Safer shared air event at Parliament House, Dr Amanda Cohn announced an Inquiry into clean indoor air - submissions are open now!
Visit the Inquiry page to learn more 🔗 bit.ly/nsw-inq
Submissions close 29th January 2026.
Reposted by Jo
Sharing again - one of my personal favourites from my archives:
Spotted pardalotes collecting nesting material at Spring Gully Conservation Park, South Australia.
Male (L) with white spots and female (R) with yellow spots.
Tree is a red stringybark (Eucalyptus macrorhyncha).
Spotted pardalotes collecting nesting material at Spring Gully Conservation Park, South Australia.
Male (L) with white spots and female (R) with yellow spots.
Tree is a red stringybark (Eucalyptus macrorhyncha).
December 16, 2025 at 5:04 AM
Sharing again - one of my personal favourites from my archives:
Spotted pardalotes collecting nesting material at Spring Gully Conservation Park, South Australia.
Male (L) with white spots and female (R) with yellow spots.
Tree is a red stringybark (Eucalyptus macrorhyncha).
Spotted pardalotes collecting nesting material at Spring Gully Conservation Park, South Australia.
Male (L) with white spots and female (R) with yellow spots.
Tree is a red stringybark (Eucalyptus macrorhyncha).
Sitting in the day procedures waiting pen. The only person in a mask. Man nearby coughing…
While having a neurological adverse reaction to my mestinon from taking it fasted.
So many sighs.
While having a neurological adverse reaction to my mestinon from taking it fasted.
So many sighs.
November 2, 2025 at 10:09 PM
Sitting in the day procedures waiting pen. The only person in a mask. Man nearby coughing…
While having a neurological adverse reaction to my mestinon from taking it fasted.
So many sighs.
While having a neurological adverse reaction to my mestinon from taking it fasted.
So many sighs.
Reposted by Jo
Towards an understanding of physical activity-induced post-exertional malaise: Insights into microvascular alterations and immunometabolic interactions in post-COVID condition and myalgic encephalomyelitis/chronic fatigue syndrome
link.springer.com/article/10.1...
link.springer.com/article/10.1...
Towards an understanding of physical activity-induced post-exertional malaise: Insights into microvascular alterations and immunometabolic interactions in post-COVID condition and myalgic encephalomye...
Background A considerable number of patients who contracted SARS-CoV-2 are affected by persistent multi-systemic symptoms, referred to as Post-COVID Condition (PCC). Post-exertional malaise (PEM) has ...
link.springer.com
October 16, 2025 at 8:04 PM
Towards an understanding of physical activity-induced post-exertional malaise: Insights into microvascular alterations and immunometabolic interactions in post-COVID condition and myalgic encephalomyelitis/chronic fatigue syndrome
link.springer.com/article/10.1...
link.springer.com/article/10.1...
Reposted by Jo
Mitochondrial heterogeneity and homeostasis through the lens of a neuron
nature.com/articles/s42...
Some nice nuggets of info in here 🧵
nature.com/articles/s42...
Some nice nuggets of info in here 🧵
Mitochondrial heterogeneity and homeostasis through the lens of a neuron - Nature Metabolism
In this Perspective, Pekkurnaz and Wang offer an integrative overview on how mitochondrial homeostasis and diversity in morphology, distribution, composition and function contribute to meeting specifi...
nature.com
October 16, 2025 at 9:54 PM
Mitochondrial heterogeneity and homeostasis through the lens of a neuron
nature.com/articles/s42...
Some nice nuggets of info in here 🧵
nature.com/articles/s42...
Some nice nuggets of info in here 🧵
Reposted by Jo
The most alarming aspect of the clinical knowledge summary published by NICE (May 2025) in response to #MaeveInquest (ended Oct 2024) is its perfect failure comprehend how to manage #PEM. This was the ignorance that killed Maeve.
3 years of inquiries. #MEKills #ME/cfs
cks.nice.org.uk/topics/myalg...
3 years of inquiries. #MEKills #ME/cfs
cks.nice.org.uk/topics/myalg...
CKS is only available in the UK
The NICE Clinical Knowledge Summary (CKS) site is only available to users in the UK, Crown Dependencies and British Overseas Territories
https://cks.nice.org.uk/topics/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me/cfs/management/management/#management-of-severe-or-very-severe-me-cfs#UKProductivity
October 14, 2025 at 7:56 AM
The most alarming aspect of the clinical knowledge summary published by NICE (May 2025) in response to #MaeveInquest (ended Oct 2024) is its perfect failure comprehend how to manage #PEM. This was the ignorance that killed Maeve.
3 years of inquiries. #MEKills #ME/cfs
cks.nice.org.uk/topics/myalg...
3 years of inquiries. #MEKills #ME/cfs
cks.nice.org.uk/topics/myalg...
Reposted by Jo
Early bird registration for our landmark conference Safer shared air: Making the invisible visible ends tomorrow - don’t miss out!
🗓 Thursday 6th November
📍 Parliament House, Canberra & online
🎟 Learn more and register: bit.ly/ssa-2025
#SaferSharedAir #MakingTheInvisibleVisible #IAQ #Inclusion
🗓 Thursday 6th November
📍 Parliament House, Canberra & online
🎟 Learn more and register: bit.ly/ssa-2025
#SaferSharedAir #MakingTheInvisibleVisible #IAQ #Inclusion
October 8, 2025 at 2:50 AM
Early bird registration for our landmark conference Safer shared air: Making the invisible visible ends tomorrow - don’t miss out!
🗓 Thursday 6th November
📍 Parliament House, Canberra & online
🎟 Learn more and register: bit.ly/ssa-2025
#SaferSharedAir #MakingTheInvisibleVisible #IAQ #Inclusion
🗓 Thursday 6th November
📍 Parliament House, Canberra & online
🎟 Learn more and register: bit.ly/ssa-2025
#SaferSharedAir #MakingTheInvisibleVisible #IAQ #Inclusion
Reposted by Jo
Medical fundraiser: Stuck between a rock & a hard place
www.gofundme.com/f/rosie-medi...
I've been in touch with this lass and she's in a really bad place. Please do support if you can, even just sharing is super helpful! 🙏
www.gofundme.com/f/rosie-medi...
I've been in touch with this lass and she's in a really bad place. Please do support if you can, even just sharing is super helpful! 🙏
Donate to Medical fundraiser :Stuck between a rock & a hard place, organized by Pixie Louise
Rosie medina - Medical bills fundraiser
:Stuck between a rock an… Pixie Louise needs your support for Medical fundraiser :Stuck between a rock & a hard place
www.gofundme.com
October 1, 2025 at 6:52 PM
Medical fundraiser: Stuck between a rock & a hard place
www.gofundme.com/f/rosie-medi...
I've been in touch with this lass and she's in a really bad place. Please do support if you can, even just sharing is super helpful! 🙏
www.gofundme.com/f/rosie-medi...
I've been in touch with this lass and she's in a really bad place. Please do support if you can, even just sharing is super helpful! 🙏
Reposted by Jo
"Nikita said she pushed for further answers but struggled to get a doctor to “listen” and so she paid £400 to have an MRI scan privately, which revealed a “large” tumour in her brain – the cause of her worsening symptoms."
October 1, 2025 at 8:56 PM
"Nikita said she pushed for further answers but struggled to get a doctor to “listen” and so she paid £400 to have an MRI scan privately, which revealed a “large” tumour in her brain – the cause of her worsening symptoms."