PZ
@itsmepz.bsky.social
Music 🎶 Film 🎞️
Hot Chips 🍟 Happiest by the sea 🌊
Forever exhausted
#pwME
Living small with ME on unceded Whadjuk Noongar country ("Perth, Australia")
Hot Chips 🍟 Happiest by the sea 🌊
Forever exhausted
#pwME
Living small with ME on unceded Whadjuk Noongar country ("Perth, Australia")
I'm happy to see Emerge Australia work on improving access to care for Aboriginal & Torres Strait Islander #pwME
There are surveys at this link and contact details for ATSI & CaLD community orgs.
Please share!
#MyalgicEncephalomyelitis
#MEcfs
#MillionsMissing
emerge.org.au/news/strengt...
There are surveys at this link and contact details for ATSI & CaLD community orgs.
Please share!
#MyalgicEncephalomyelitis
#MEcfs
#MillionsMissing
emerge.org.au/news/strengt...
Strengthening culturally inclusive care for people with ME/CFS and long COVID – Emerge Australia
emerge.org.au
November 14, 2025 at 8:27 AM
I'm happy to see Emerge Australia work on improving access to care for Aboriginal & Torres Strait Islander #pwME
There are surveys at this link and contact details for ATSI & CaLD community orgs.
Please share!
#MyalgicEncephalomyelitis
#MEcfs
#MillionsMissing
emerge.org.au/news/strengt...
There are surveys at this link and contact details for ATSI & CaLD community orgs.
Please share!
#MyalgicEncephalomyelitis
#MEcfs
#MillionsMissing
emerge.org.au/news/strengt...
Release the Epstein-Barr files!
November 13, 2025 at 12:17 AM
Reposted by PZ
People w/ severe ME are well practiced in the discipline of surviving for the sake of survival, of caring for bodies that may never “get better.” In a world of climate collapse & ecocide where *most* ecosystems are becoming sick & disabled, it’s a discipline we should all be practicing.
October 31, 2025 at 12:58 AM
People w/ severe ME are well practiced in the discipline of surviving for the sake of survival, of caring for bodies that may never “get better.” In a world of climate collapse & ecocide where *most* ecosystems are becoming sick & disabled, it’s a discipline we should all be practicing.
Reposted by PZ
This is the full quote.
@medscape.com doesn’t mention
ME/CFS once in the article.
How this should read instead: Post-exertional malaise (PEM) is the hallmark of #MECFS, a condition found to affect at least 50% of those with #LongCovid.
Why this matters🧵
@medscape.com doesn’t mention
ME/CFS once in the article.
How this should read instead: Post-exertional malaise (PEM) is the hallmark of #MECFS, a condition found to affect at least 50% of those with #LongCovid.
Why this matters🧵
October 30, 2025 at 2:10 AM
This is the full quote.
@medscape.com doesn’t mention
ME/CFS once in the article.
How this should read instead: Post-exertional malaise (PEM) is the hallmark of #MECFS, a condition found to affect at least 50% of those with #LongCovid.
Why this matters🧵
@medscape.com doesn’t mention
ME/CFS once in the article.
How this should read instead: Post-exertional malaise (PEM) is the hallmark of #MECFS, a condition found to affect at least 50% of those with #LongCovid.
Why this matters🧵
Reposted by PZ
Obvious cases of ME/CFS being labelled only as as Post-COVID is not only erasure, but also
harmful. The people affected miss out on some crucial PEM and severity specific info.
(Obviously, ME/CFS is rarely managed optimally by the medical system, but neither is long COVID!)
harmful. The people affected miss out on some crucial PEM and severity specific info.
(Obviously, ME/CFS is rarely managed optimally by the medical system, but neither is long COVID!)
Medscape: 'Secondary Infections and Long COVID in Kids: What Pediatricians Need to Know'
'...pediatricians should watch for are profound fatigue and post-exertional malaise..this is a debilitating and hallmark symptom of long COVID..'
www.medscape.com/viewarticle/...
'...pediatricians should watch for are profound fatigue and post-exertional malaise..this is a debilitating and hallmark symptom of long COVID..'
www.medscape.com/viewarticle/...
Long COVID in Kids: What Pediatricians Need to Know
New research suggests that children and teens who get COVID a second time face twice the risk for developing long COVID.
www.medscape.com
October 29, 2025 at 3:47 PM
Obvious cases of ME/CFS being labelled only as as Post-COVID is not only erasure, but also
harmful. The people affected miss out on some crucial PEM and severity specific info.
(Obviously, ME/CFS is rarely managed optimally by the medical system, but neither is long COVID!)
harmful. The people affected miss out on some crucial PEM and severity specific info.
(Obviously, ME/CFS is rarely managed optimally by the medical system, but neither is long COVID!)
Pediatricians should be acquainting themselves with #MEcfs, dysautonomia/POTS, and MCAS - some of the most common outcomes in Long Covid.
PEM (and PENE) were coined for MEcfs/ME - an illness that extends back centuries under various names and iterations.
(And a reminder that...
PEM (and PENE) were coined for MEcfs/ME - an illness that extends back centuries under various names and iterations.
(And a reminder that...
Medscape: 'Secondary Infections and Long COVID in Kids: What Pediatricians Need to Know'
'...pediatricians should watch for are profound fatigue and post-exertional malaise..this is a debilitating and hallmark symptom of long COVID..'
www.medscape.com/viewarticle/...
'...pediatricians should watch for are profound fatigue and post-exertional malaise..this is a debilitating and hallmark symptom of long COVID..'
www.medscape.com/viewarticle/...
Long COVID in Kids: What Pediatricians Need to Know
New research suggests that children and teens who get COVID a second time face twice the risk for developing long COVID.
www.medscape.com
October 29, 2025 at 10:46 PM
Pediatricians should be acquainting themselves with #MEcfs, dysautonomia/POTS, and MCAS - some of the most common outcomes in Long Covid.
PEM (and PENE) were coined for MEcfs/ME - an illness that extends back centuries under various names and iterations.
(And a reminder that...
PEM (and PENE) were coined for MEcfs/ME - an illness that extends back centuries under various names and iterations.
(And a reminder that...
Reposted by PZ
Those are actually the hallmark features of ME/CFS.
Medicine has completely botched everything dealing with ME/CFS for decades, has refused thousands of opportunities to do better about it.
And yet again it has been botched so completely that the past doesn't even exist, erased from existence.
Medicine has completely botched everything dealing with ME/CFS for decades, has refused thousands of opportunities to do better about it.
And yet again it has been botched so completely that the past doesn't even exist, erased from existence.
Medscape: 'Secondary Infections and Long COVID in Kids: What Pediatricians Need to Know'
'...pediatricians should watch for are profound fatigue and post-exertional malaise..this is a debilitating and hallmark symptom of long COVID..'
www.medscape.com/viewarticle/...
'...pediatricians should watch for are profound fatigue and post-exertional malaise..this is a debilitating and hallmark symptom of long COVID..'
www.medscape.com/viewarticle/...
Long COVID in Kids: What Pediatricians Need to Know
New research suggests that children and teens who get COVID a second time face twice the risk for developing long COVID.
www.medscape.com
October 29, 2025 at 2:45 PM
Those are actually the hallmark features of ME/CFS.
Medicine has completely botched everything dealing with ME/CFS for decades, has refused thousands of opportunities to do better about it.
And yet again it has been botched so completely that the past doesn't even exist, erased from existence.
Medicine has completely botched everything dealing with ME/CFS for decades, has refused thousands of opportunities to do better about it.
And yet again it has been botched so completely that the past doesn't even exist, erased from existence.
Reposted by PZ
Bring back earnestness and sincerity as virtues...
October 23, 2025 at 12:46 PM
Bring back earnestness and sincerity as virtues...
I am so grateful for the honesty and vulnerability of #pwME who share their personal stories.
It gives others the courage to speak and reminds us that we are not alone in this reduced and often painful experience of life.
#MyalgicEncephalomyelitis
#MillionsMissing
It gives others the courage to speak and reminds us that we are not alone in this reduced and often painful experience of life.
#MyalgicEncephalomyelitis
#MillionsMissing
It has been one year since I started sharing more openly about my life with severe ME/CFS. I chose to do it through my photography, resulting in my ongoing series ‘Enduring: Life with Severe ME/CFS’. 1/10
#MECFS #pwME #Photography #SelfDocumentary
#MECFS #pwME #Photography #SelfDocumentary
October 21, 2025 at 10:18 AM
I am so grateful for the honesty and vulnerability of #pwME who share their personal stories.
It gives others the courage to speak and reminds us that we are not alone in this reduced and often painful experience of life.
#MyalgicEncephalomyelitis
#MillionsMissing
It gives others the courage to speak and reminds us that we are not alone in this reduced and often painful experience of life.
#MyalgicEncephalomyelitis
#MillionsMissing
When will people learn that a company won't love you?
The grind culture that birthed many Big Tech companies from Google to Amazon is back.
As the AI race heats up, startups are promoting hardcore cultures like “996,” or working 9 a.m. to 9 p.m., six days a week.
As the AI race heats up, startups are promoting hardcore cultures like “996,” or working 9 a.m. to 9 p.m., six days a week.
Why these companies insist on a 72-hour work week
Start-ups are promoting hardcore cultures such as “996,” meaning working from 9 a.m. to 9 p.m. six days a week, as they race to compete in AI.
www.washingtonpost.com
October 20, 2025 at 11:38 PM
When will people learn that a company won't love you?
Reposted by PZ
People with ME/CFS are the antithesis of quitters. To keep showing up and choosing life and trying to find ways to be more alive in the face of immense physical and societal challenges is courageous, disciplined, and heroic.
October 19, 2025 at 12:09 AM
People with ME/CFS are the antithesis of quitters. To keep showing up and choosing life and trying to find ways to be more alive in the face of immense physical and societal challenges is courageous, disciplined, and heroic.
The school curriculum should include the teaching of *Genocide* under which the Holocaust is one event amongst other examples all across the world including Australia, America, Africa, Bosnia, Burma, India and so on and on and on and on...
Do you have any extremely niche, but serious, ethical stances?
October 19, 2025 at 4:53 AM
The school curriculum should include the teaching of *Genocide* under which the Holocaust is one event amongst other examples all across the world including Australia, America, Africa, Bosnia, Burma, India and so on and on and on and on...
Reposted by PZ
This, then, is the human problem: there is a price to be paid for every increase in consciousness. We cannot be more sensitive to pleasure without being more sensitive to pain.~Alan Watts, 𝘛𝘩𝘦 𝘞𝘪𝘴𝘥𝘰𝘮 𝘰𝘧 𝘐𝘯𝘴𝘦𝘤𝘶𝘳𝘪𝘵𝘺
October 18, 2025 at 12:28 PM
This, then, is the human problem: there is a price to be paid for every increase in consciousness. We cannot be more sensitive to pleasure without being more sensitive to pain.~Alan Watts, 𝘛𝘩𝘦 𝘞𝘪𝘴𝘥𝘰𝘮 𝘰𝘧 𝘐𝘯𝘴𝘦𝘤𝘶𝘳𝘪𝘵𝘺
Reposted by PZ
How can we get people to become conscious of the fact that
there is a disease that they don't know exists
that will absolutely destroy your life,
help is nonexistent and
you'll be screaming into an abyss for the rest of your torturous life if it takes you down
by a roll of the dice.
#MEcfs
there is a disease that they don't know exists
that will absolutely destroy your life,
help is nonexistent and
you'll be screaming into an abyss for the rest of your torturous life if it takes you down
by a roll of the dice.
#MEcfs
There’s also #MECFS
1 in 22 covid infections will go on to develop ME, a condition with one of the worst qualities of life.
Only 25% of us can work.
The severest are too sick to leave their house and/or bed.
The absolute worst are tube fed, unable to tolerate light, sound or touch.
1 in 22 covid infections will go on to develop ME, a condition with one of the worst qualities of life.
Only 25% of us can work.
The severest are too sick to leave their house and/or bed.
The absolute worst are tube fed, unable to tolerate light, sound or touch.
October 15, 2025 at 3:55 AM
How can we get people to become conscious of the fact that
there is a disease that they don't know exists
that will absolutely destroy your life,
help is nonexistent and
you'll be screaming into an abyss for the rest of your torturous life if it takes you down
by a roll of the dice.
#MEcfs
there is a disease that they don't know exists
that will absolutely destroy your life,
help is nonexistent and
you'll be screaming into an abyss for the rest of your torturous life if it takes you down
by a roll of the dice.
#MEcfs
- A school day should be 5 hours max and not start before 10am.
- Essential food items (bread, milk, eggs, vegetables) and medicines should be govt subsidised.
- All household appliances/electronics should be built to last 10 years min. If they fail within 10 yrs you get a free replacement.
- Essential food items (bread, milk, eggs, vegetables) and medicines should be govt subsidised.
- All household appliances/electronics should be built to last 10 years min. If they fail within 10 yrs you get a free replacement.
Do you have any extremely niche, but serious, ethical stances?
October 18, 2025 at 11:17 PM
- A school day should be 5 hours max and not start before 10am.
- Essential food items (bread, milk, eggs, vegetables) and medicines should be govt subsidised.
- All household appliances/electronics should be built to last 10 years min. If they fail within 10 yrs you get a free replacement.
- Essential food items (bread, milk, eggs, vegetables) and medicines should be govt subsidised.
- All household appliances/electronics should be built to last 10 years min. If they fail within 10 yrs you get a free replacement.
Reposted by PZ
It shouldn't be niche, but the moment private property was invented and land became owned by individuals and corporations, universal basic income became a human right, and every day since it has been unethical to not implement UBI.
The Spaceballs Argument for Unconditional Basic Income (UBI)
There is an argument frequently made against the concept of unconditional basic income (UBI) that essentially goes like this: "Life requires work. You can't just expect to live without work, and it's ...
www.scottsantens.com
October 17, 2025 at 2:15 AM
It shouldn't be niche, but the moment private property was invented and land became owned by individuals and corporations, universal basic income became a human right, and every day since it has been unethical to not implement UBI.
Remembering that Suzy Weiss wrote an awful piece "Hurts so good" about invisible chronic illnesses and " online spoonie-ism".
Fucking awful person.
Fucking awful person.
UPDATE: Per our scoop last night, Suzy Weiss, sister of Bari, did indeed appear on CBS this morning to talk about her recent article in The Free Press.
Second Free Press writer on CBS this week.
Read more on staff concerns on The Free Press's presence inside the newsroom:
zeteo.com/p/inside-bar...
Second Free Press writer on CBS this week.
Read more on staff concerns on The Free Press's presence inside the newsroom:
zeteo.com/p/inside-bar...
October 18, 2025 at 4:09 AM
Remembering that Suzy Weiss wrote an awful piece "Hurts so good" about invisible chronic illnesses and " online spoonie-ism".
Fucking awful person.
Fucking awful person.
Reposted by PZ
3. There is NO ethical use of the planet-destroying, disinformation-spreading, fascist-enabling, billionaire-enriching plagiarism machine.
October 17, 2025 at 2:30 AM
3. There is NO ethical use of the planet-destroying, disinformation-spreading, fascist-enabling, billionaire-enriching plagiarism machine.
How can we get people to become conscious of the fact that
there is a disease that they don't know exists
that will absolutely destroy your life,
help is nonexistent and
you'll be screaming into an abyss for the rest of your torturous life if it takes you down
by a roll of the dice.
#MEcfs
there is a disease that they don't know exists
that will absolutely destroy your life,
help is nonexistent and
you'll be screaming into an abyss for the rest of your torturous life if it takes you down
by a roll of the dice.
#MEcfs
There’s also #MECFS
1 in 22 covid infections will go on to develop ME, a condition with one of the worst qualities of life.
Only 25% of us can work.
The severest are too sick to leave their house and/or bed.
The absolute worst are tube fed, unable to tolerate light, sound or touch.
1 in 22 covid infections will go on to develop ME, a condition with one of the worst qualities of life.
Only 25% of us can work.
The severest are too sick to leave their house and/or bed.
The absolute worst are tube fed, unable to tolerate light, sound or touch.
October 15, 2025 at 3:55 AM
How can we get people to become conscious of the fact that
there is a disease that they don't know exists
that will absolutely destroy your life,
help is nonexistent and
you'll be screaming into an abyss for the rest of your torturous life if it takes you down
by a roll of the dice.
#MEcfs
there is a disease that they don't know exists
that will absolutely destroy your life,
help is nonexistent and
you'll be screaming into an abyss for the rest of your torturous life if it takes you down
by a roll of the dice.
#MEcfs
Reposted by PZ
Do you all think it’s inhumane to leave people rotting in bed (literally, not metaphorically)? Im talking about people who cannot tolerate light and sound, and maybe even touch. People who can’t drink or chew on their own. For decades.
If so then you should look up Myalgic Encephalomyelitis.
If so then you should look up Myalgic Encephalomyelitis.
October 10, 2025 at 4:18 PM
Do you all think it’s inhumane to leave people rotting in bed (literally, not metaphorically)? Im talking about people who cannot tolerate light and sound, and maybe even touch. People who can’t drink or chew on their own. For decades.
If so then you should look up Myalgic Encephalomyelitis.
If so then you should look up Myalgic Encephalomyelitis.
Reposted by PZ
The truth of the matter is: anyone you know living with ME/CFS is one of the bravest mofos you know
Abusive assholes don't have the strength of character and heart to be able to endure an illness like this; they'd crumble within their first week of having it.
Abusive assholes don't have the strength of character and heart to be able to endure an illness like this; they'd crumble within their first week of having it.
October 8, 2025 at 6:26 AM
The truth of the matter is: anyone you know living with ME/CFS is one of the bravest mofos you know
Abusive assholes don't have the strength of character and heart to be able to endure an illness like this; they'd crumble within their first week of having it.
Abusive assholes don't have the strength of character and heart to be able to endure an illness like this; they'd crumble within their first week of having it.
Reposted by PZ
I know I’m not really here much (I check messages/notifications though), but I wanted to share the gofundme of someone in the ME community.
This is urgent life or death. I don’t have much energy to promote this, but I hope you all will take up the cause:
gofund.me/8da0ebb46
This is urgent life or death. I don’t have much energy to promote this, but I hope you all will take up the cause:
gofund.me/8da0ebb46
Donate to Help Save Richard from Permanent Brain Damage, organized by Birgitta Abrahamsson
Help Save Richard from Permanent Brain Damage
My son Richard ha… Birgitta Abrahamsson needs your support for Help Save Richard from Permanent Brain Damage
gofund.me
October 3, 2025 at 3:21 AM
I know I’m not really here much (I check messages/notifications though), but I wanted to share the gofundme of someone in the ME community.
This is urgent life or death. I don’t have much energy to promote this, but I hope you all will take up the cause:
gofund.me/8da0ebb46
This is urgent life or death. I don’t have much energy to promote this, but I hope you all will take up the cause:
gofund.me/8da0ebb46
Reposted by PZ
Honestly sometimes I get why people have a hard time believing people with #MECFS.
The mechanics are so ridiculous.
“What do you mean the vibrations from a car ride can crash you?!?”
The mechanics are so ridiculous.
“What do you mean the vibrations from a car ride can crash you?!?”
October 4, 2025 at 7:54 AM
Honestly sometimes I get why people have a hard time believing people with #MECFS.
The mechanics are so ridiculous.
“What do you mean the vibrations from a car ride can crash you?!?”
The mechanics are so ridiculous.
“What do you mean the vibrations from a car ride can crash you?!?”
Reposted by PZ
if you really knew what moderate--severe--very-severe ME/CFS was like, you would be screaming on our behalf. you would not stop screaming. there are no social supports and no medical treatments. the situation is so much more dire than you can possibly imagine
September 30, 2025 at 1:12 AM
if you really knew what moderate--severe--very-severe ME/CFS was like, you would be screaming on our behalf. you would not stop screaming. there are no social supports and no medical treatments. the situation is so much more dire than you can possibly imagine
A couple of years ago I was in touch with a journalist and I tried to pitch to her the story of Alem Matthees, the work he had contributed to uncovering the PACE trial fraud and how he had become more devastatingly ill in the process.
I also said we needed someone asking the hard questions to...
I also said we needed someone asking the hard questions to...
People with mild ME/Long Covid & people who have recovered, please start advocating for the most severe instead of mildwashing the disease & using your story to sell your personal projects while feeding the media narrative of “individual overcoming” 🙏
September 29, 2025 at 9:53 AM
A couple of years ago I was in touch with a journalist and I tried to pitch to her the story of Alem Matthees, the work he had contributed to uncovering the PACE trial fraud and how he had become more devastatingly ill in the process.
I also said we needed someone asking the hard questions to...
I also said we needed someone asking the hard questions to...