Something Chronic
@somethingchronic.bsky.social
Mostly bedbound by severe #ME/CFS #POTS #EDS #MCAS + more. Chronically hopeful for better days. Determined to fight against injustice so people with ME + Long Covid are treated with the same belief, respect + kindness as any other serious physical illness
Pinned
1 of 9
My #SevereME Christmas
* All day mostly alone
* No TV, music or twinkly lights due to extreme sensory sensitivities
* I won’t be able to see anyone except my husband (also my caregiver) as I don’t have enough energy to interact with them. We’ll mostly sign for the things I need …
My #SevereME Christmas
* All day mostly alone
* No TV, music or twinkly lights due to extreme sensory sensitivities
* I won’t be able to see anyone except my husband (also my caregiver) as I don’t have enough energy to interact with them. We’ll mostly sign for the things I need …
Reposted by Something Chronic
In 2023 it would have cost £901 per day for the NHS inpatient care Maeve had & they starved her to death.
Karen has a lawyer to keep her alive, almost certainly paid for by Legal Aid.
@wesstreeting.bsky.social
@laylamoran.bsky.social
@jeremyhuntmp.bsky.social
So much could be saved
#pwME
Karen has a lawyer to keep her alive, almost certainly paid for by Legal Aid.
@wesstreeting.bsky.social
@laylamoran.bsky.social
@jeremyhuntmp.bsky.social
So much could be saved
#pwME
"Karen has been in hospital for 2 years on the 19th of December. It has been and continues to be very difficult and is being made much worse because of East Sussex Healthcare NHS Trust’s (ESHT) threats to take Karen to Court and evict her from hospital without the IV feeding and I/V"
Not seen anything since the last update on her petition on dec 20. www.change.org/p/save-karen...
January 13, 2026 at 6:50 PM
In 2023 it would have cost £901 per day for the NHS inpatient care Maeve had & they starved her to death.
Karen has a lawyer to keep her alive, almost certainly paid for by Legal Aid.
@wesstreeting.bsky.social
@laylamoran.bsky.social
@jeremyhuntmp.bsky.social
So much could be saved
#pwME
Karen has a lawyer to keep her alive, almost certainly paid for by Legal Aid.
@wesstreeting.bsky.social
@laylamoran.bsky.social
@jeremyhuntmp.bsky.social
So much could be saved
#pwME
Reposted by Something Chronic
Today's Post : Fatigue (And it isn't just "feeling. bit tired")
Millions of us rank fatigue as our most disabling symptom Rachel Reeves and @lizkendallmp.bsky.social
open.substack.com/pub/undercla...
#Crohns #ME #Fatigue #MS
Please read, share and subscribe.
Millions of us rank fatigue as our most disabling symptom Rachel Reeves and @lizkendallmp.bsky.social
open.substack.com/pub/undercla...
#Crohns #ME #Fatigue #MS
Please read, share and subscribe.
Fatigue
(And it isn't just "feeling a bit tired")
open.substack.com
January 13, 2026 at 9:14 AM
Today's Post : Fatigue (And it isn't just "feeling. bit tired")
Millions of us rank fatigue as our most disabling symptom Rachel Reeves and @lizkendallmp.bsky.social
open.substack.com/pub/undercla...
#Crohns #ME #Fatigue #MS
Please read, share and subscribe.
Millions of us rank fatigue as our most disabling symptom Rachel Reeves and @lizkendallmp.bsky.social
open.substack.com/pub/undercla...
#Crohns #ME #Fatigue #MS
Please read, share and subscribe.
Reposted by Something Chronic
I was diagnosed with POTS years before COVID
When the first cases of Long Covid were reported, I thought we would see breakthroughs in POTS, MCAS, ME/CFS and more.
I assumed the problem was too big to ignore.
Unfortunately I was wrong, and most LC patients have been abandoned like the rest of us.
When the first cases of Long Covid were reported, I thought we would see breakthroughs in POTS, MCAS, ME/CFS and more.
I assumed the problem was too big to ignore.
Unfortunately I was wrong, and most LC patients have been abandoned like the rest of us.
Medscape: Where Is the Medical Home for Postinfectious Illness?
"COVID pandemic brought a surge of more patients with POTS & infection-associated chronic illness. What had once felt like a rare or niche diagnosis now seemed to be everywhere, impossible to ignore"
www.medscape.com/viewarticle/...
"COVID pandemic brought a surge of more patients with POTS & infection-associated chronic illness. What had once felt like a rare or niche diagnosis now seemed to be everywhere, impossible to ignore"
www.medscape.com/viewarticle/...
Where Is the Medical Home for Postinfectious Illness?
A rheumatologist calls for greater awareness among her colleagues but also emphasizes that these patients require multidisciplinary care.
www.medscape.com
January 7, 2026 at 5:24 AM
I was diagnosed with POTS years before COVID
When the first cases of Long Covid were reported, I thought we would see breakthroughs in POTS, MCAS, ME/CFS and more.
I assumed the problem was too big to ignore.
Unfortunately I was wrong, and most LC patients have been abandoned like the rest of us.
When the first cases of Long Covid were reported, I thought we would see breakthroughs in POTS, MCAS, ME/CFS and more.
I assumed the problem was too big to ignore.
Unfortunately I was wrong, and most LC patients have been abandoned like the rest of us.
Reposted by Something Chronic
It has indeed. In my case to 38years of chronic disabling illness; my academic career, my psychotherapy career, my very young daughter and my marriage were all irredeemably damaged by medics who were either ignorant or just plain cruel.
And I’m one of the lucky ones who didn’t end up dying.
And I’m one of the lucky ones who didn’t end up dying.
January 9, 2026 at 6:22 PM
It has indeed. In my case to 38years of chronic disabling illness; my academic career, my psychotherapy career, my very young daughter and my marriage were all irredeemably damaged by medics who were either ignorant or just plain cruel.
And I’m one of the lucky ones who didn’t end up dying.
And I’m one of the lucky ones who didn’t end up dying.
Reposted by Something Chronic
Sickness, Disability, and Death in NHS England Staff
The three graphs that *every person* needs to see.
The question that every single person needs to ask their government:
What are you doing to protect me from Covid infection?
The three graphs that *every person* needs to see.
The question that every single person needs to ask their government:
What are you doing to protect me from Covid infection?
January 10, 2026 at 6:45 AM
Sickness, Disability, and Death in NHS England Staff
The three graphs that *every person* needs to see.
The question that every single person needs to ask their government:
What are you doing to protect me from Covid infection?
The three graphs that *every person* needs to see.
The question that every single person needs to ask their government:
What are you doing to protect me from Covid infection?
Reposted by Something Chronic
The world's richest 0.1% took just three days to exhaust their annual carbon budget
The UK’s richest 1% produced more carbon pollution in eight days than the poorest 50% used in a year.
We can't afford the rich - they produce corruption, poverty, environmental degradation; destroy democracy.
The UK’s richest 1% produced more carbon pollution in eight days than the poorest 50% used in a year.
We can't afford the rich - they produce corruption, poverty, environmental degradation; destroy democracy.
World’s richest 1% have already used fair share of emissions for 2026, says Oxfam
Richest 1% took 10 days while wealthiest 0.1% needed just three days to exhaust annual carbon budget, study shows
www.theguardian.com
January 10, 2026 at 7:56 AM
The world's richest 0.1% took just three days to exhaust their annual carbon budget
The UK’s richest 1% produced more carbon pollution in eight days than the poorest 50% used in a year.
We can't afford the rich - they produce corruption, poverty, environmental degradation; destroy democracy.
The UK’s richest 1% produced more carbon pollution in eight days than the poorest 50% used in a year.
We can't afford the rich - they produce corruption, poverty, environmental degradation; destroy democracy.
Reposted by Something Chronic
Today's Post : "The Addenbrookes Infection"
How does a Trust become so toxic, it ends with a Letby or an AlderHey? Like this.....
open.substack.com/pub/undercla...
Please read, subscribe and share.
We have to start hearing uncomfortable truths about the NHS, or we can't fix it.
How does a Trust become so toxic, it ends with a Letby or an AlderHey? Like this.....
open.substack.com/pub/undercla...
Please read, subscribe and share.
We have to start hearing uncomfortable truths about the NHS, or we can't fix it.
The Addenbrookes Infection
*Other Trusts may apply
open.substack.com
January 2, 2026 at 10:54 AM
Today's Post : "The Addenbrookes Infection"
How does a Trust become so toxic, it ends with a Letby or an AlderHey? Like this.....
open.substack.com/pub/undercla...
Please read, subscribe and share.
We have to start hearing uncomfortable truths about the NHS, or we can't fix it.
How does a Trust become so toxic, it ends with a Letby or an AlderHey? Like this.....
open.substack.com/pub/undercla...
Please read, subscribe and share.
We have to start hearing uncomfortable truths about the NHS, or we can't fix it.
Reposted by Something Chronic
[email protected] Thanks for your support on the Other Place.
"Sue is a tireless & effective campaigner for people with disabilities, knows many people with ME & sadly, has Crohns disease & knows plenty about IV feeding from personal experience."
"Sue is a tireless & effective campaigner for people with disabilities, knows many people with ME & sadly, has Crohns disease & knows plenty about IV feeding from personal experience."
December 21, 2025 at 2:01 PM
[email protected] Thanks for your support on the Other Place.
"Sue is a tireless & effective campaigner for people with disabilities, knows many people with ME & sadly, has Crohns disease & knows plenty about IV feeding from personal experience."
"Sue is a tireless & effective campaigner for people with disabilities, knows many people with ME & sadly, has Crohns disease & knows plenty about IV feeding from personal experience."
Reposted by Something Chronic
My first post of 2026!
"I'm all out of Spoons"
If you're a seasoned #spoonie please RT for others. If you don't know the term, but have a long term condition, then this is for you!
open.substack.com/pub/undercla...
"I'm all out of Spoons"
If you're a seasoned #spoonie please RT for others. If you don't know the term, but have a long term condition, then this is for you!
open.substack.com/pub/undercla...
January 1, 2026 at 8:51 AM
My first post of 2026!
"I'm all out of Spoons"
If you're a seasoned #spoonie please RT for others. If you don't know the term, but have a long term condition, then this is for you!
open.substack.com/pub/undercla...
"I'm all out of Spoons"
If you're a seasoned #spoonie please RT for others. If you don't know the term, but have a long term condition, then this is for you!
open.substack.com/pub/undercla...
Reposted by Something Chronic
it’s all i’ve got
December 31, 2025 at 11:58 PM
it’s all i’ve got
Reposted by Something Chronic
German public radio station Deutschlandfunk has published a 3700-word article & radio piece on how #MECFS & #LongCovid impact life & autonomy. Article is titled: "Die Grenzen der Autonomie Wie Post-Covid & ME/CFS das Leben verändern”
Translation
www-deutschlandfunk-de.translate.goog/wie-postcovi...
Translation
www-deutschlandfunk-de.translate.goog/wie-postcovi...
Leben mit Post-Covid und ME/CFS: Wie sich der Umgang mit Trauer, Verlusten und Grenzen wandelt
Schmerzen und Reizüberflutung: ME/CFS ist eine Ansammlung trauriger Superlative - ein Leben in einem permanenten Krankheitsgefühl.
www-deutschlandfunk-de.translate.goog
December 29, 2025 at 1:15 PM
German public radio station Deutschlandfunk has published a 3700-word article & radio piece on how #MECFS & #LongCovid impact life & autonomy. Article is titled: "Die Grenzen der Autonomie Wie Post-Covid & ME/CFS das Leben verändern”
Translation
www-deutschlandfunk-de.translate.goog/wie-postcovi...
Translation
www-deutschlandfunk-de.translate.goog/wie-postcovi...
Reposted by Something Chronic
December 29, 2025 at 1:16 PM
Reposted by Something Chronic
Next time you see an article quoting a transphobe from one of the fauxminist ‘gender critical’ transphobic hate groups - email/ tag the journalist and ask them why they’ve not asked @nionwomen.bsky.social for a quote - as they’re MUCH more representative of UK women!
notinourname.org.uk
notinourname.org.uk
Home - Not in our name
Not In our Name: Women in support of the trans+community
notinourname.org.uk
December 29, 2025 at 11:03 AM
Next time you see an article quoting a transphobe from one of the fauxminist ‘gender critical’ transphobic hate groups - email/ tag the journalist and ask them why they’ve not asked @nionwomen.bsky.social for a quote - as they’re MUCH more representative of UK women!
notinourname.org.uk
notinourname.org.uk
Reposted by Something Chronic
Peter Thiel’s Christmas party had an odd theme this year: “all things Britain.” (per NYT)
As Trump sunsets and backlash builds, expect a focus shift to the UK—where some see brighter possibilities for fascism,network states, and monarchies.
As Trump sunsets and backlash builds, expect a focus shift to the UK—where some see brighter possibilities for fascism,network states, and monarchies.
December 29, 2025 at 4:02 AM
Peter Thiel’s Christmas party had an odd theme this year: “all things Britain.” (per NYT)
As Trump sunsets and backlash builds, expect a focus shift to the UK—where some see brighter possibilities for fascism,network states, and monarchies.
As Trump sunsets and backlash builds, expect a focus shift to the UK—where some see brighter possibilities for fascism,network states, and monarchies.
Reposted by Something Chronic
GOOD NEWS! Researchers have shown Alzheimer’s disease can be REVERSED- not just prevented. Using a potent neuroprotective compound called P7C3-A20, they found RESTORING balance to a central cellular energy molecule (NAD+) not only PREVENTED disease features but REVERSED them, EVEN at late stages.
December 28, 2025 at 5:00 PM
GOOD NEWS! Researchers have shown Alzheimer’s disease can be REVERSED- not just prevented. Using a potent neuroprotective compound called P7C3-A20, they found RESTORING balance to a central cellular energy molecule (NAD+) not only PREVENTED disease features but REVERSED them, EVEN at late stages.
Reposted by Something Chronic
Day #395
Non-stop pro-Euro #protests in #Tbilisi #Georgia
#Regime continues to silence us, but... here we are!
#GeorgiaProtests
#terrorinGeorgia
Non-stop pro-Euro #protests in #Tbilisi #Georgia
#Regime continues to silence us, but... here we are!
#GeorgiaProtests
#terrorinGeorgia
December 27, 2025 at 5:17 PM
Day #395
Non-stop pro-Euro #protests in #Tbilisi #Georgia
#Regime continues to silence us, but... here we are!
#GeorgiaProtests
#terrorinGeorgia
Non-stop pro-Euro #protests in #Tbilisi #Georgia
#Regime continues to silence us, but... here we are!
#GeorgiaProtests
#terrorinGeorgia
Reposted by Something Chronic
I have worn a mask in public for over 5 years. My husband has had profound, life-changing long Covid for over 4 years, and now our kid does as well. I can’t imagine I will stop masking unless their circumstances change. And for what it’s worth I haven’t had even a cold for the last four+ years.
always strange to talk about but when i see everyone around me accepting sickness when i have been doing just one thing different while attending movies parties bars concerts flights…….i feel morally obligated to occasionally mention that wearing a mask has been a game changer. simple as that
December 28, 2025 at 1:23 AM
I have worn a mask in public for over 5 years. My husband has had profound, life-changing long Covid for over 4 years, and now our kid does as well. I can’t imagine I will stop masking unless their circumstances change. And for what it’s worth I haven’t had even a cold for the last four+ years.
Reposted by Something Chronic
Zuckerberg settles $8 billion lawsuit over Cambridge Analytica scandal, avoids testifying www.france24.com/en/americas/... @carolecadwalla.bsky.social
Zuckerberg settles $8 billion lawsuit over Cambridge Analytica scandal, avoids testifying
Mark Zuckerberg and current and former Meta executives agreed on Thursday to settle a $8 billion shareholder lawsuit alleging the company’s directors failed to prevent billions of dollars in fines and...
www.france24.com
December 27, 2025 at 10:31 PM
Zuckerberg settles $8 billion lawsuit over Cambridge Analytica scandal, avoids testifying www.france24.com/en/americas/... @carolecadwalla.bsky.social
Reposted by Something Chronic
Oh my goodness, this is such a lovely story www.bbc.com/news/article...
Cardiff couple invited man in for Christmas, he stayed for 45 years
An arrangement Rob and Dianne Parsons thought would last a few days ended up changing their lives.
www.bbc.com
December 25, 2025 at 10:12 PM
Oh my goodness, this is such a lovely story www.bbc.com/news/article...
Reposted by Something Chronic
📝 The one from Substack I’m most pleased with from 2025.
Primarily because people rarely make the comparison between Farage and Johnson, despite the fact they share the same brand of elitist, chaotic, egomaniac politics 👇🏻
Primarily because people rarely make the comparison between Farage and Johnson, despite the fact they share the same brand of elitist, chaotic, egomaniac politics 👇🏻
Farage will fall into the same trap as Boris Johnson
Farage’s populist insurgency will unravel, and it will bear the hallmarks of Johnson’s demise.
open.substack.com
December 27, 2025 at 11:03 AM
📝 The one from Substack I’m most pleased with from 2025.
Primarily because people rarely make the comparison between Farage and Johnson, despite the fact they share the same brand of elitist, chaotic, egomaniac politics 👇🏻
Primarily because people rarely make the comparison between Farage and Johnson, despite the fact they share the same brand of elitist, chaotic, egomaniac politics 👇🏻
Reposted by Something Chronic
Rhys ab Owen MS shares the story of a woman with #MECFS who spent decades housebound & bedbound. Her mother describes >30 years of neglect, abuse & being ignored because professionals would not set aside their beliefs, e.g. a child protection referral that caused years of stress.
December 12, 2025 at 7:35 AM
Rhys ab Owen MS shares the story of a woman with #MECFS who spent decades housebound & bedbound. Her mother describes >30 years of neglect, abuse & being ignored because professionals would not set aside their beliefs, e.g. a child protection referral that caused years of stress.
Reposted by Something Chronic
Highlights — Adam Price warns that the failures in Maeve Boothby O’Neill’s case could happen in Wales, and asks the Cabinet Secretary to respond to the Prevention of Future Deaths Report and implement lessons learned from the Devon Trust into an all-Wales protocol.
December 11, 2025 at 6:37 AM
Highlights — Adam Price warns that the failures in Maeve Boothby O’Neill’s case could happen in Wales, and asks the Cabinet Secretary to respond to the Prevention of Future Deaths Report and implement lessons learned from the Devon Trust into an all-Wales protocol.
Reposted by Something Chronic
A quick plug for The Hope Projects: a charity that houses refugees made absolutely destitute by Britain’s brutal asylum polices. Every time you give them some money somebody eats and Farage cries.
hope-projects.org.uk/about-hope/
Donate here: cafdonate.cafonline.org/9696#!/Donat...
hope-projects.org.uk/about-hope/
Donate here: cafdonate.cafonline.org/9696#!/Donat...
About Hope - The Hope Projects
Why does Hope exist?
Imagine fleeing persecution and having to seek protection in another land. You’d hope for welcome, sympathy and for your rights to be respected. Sadly the British asylum system i...
hope-projects.org.uk
December 24, 2025 at 3:37 PM
A quick plug for The Hope Projects: a charity that houses refugees made absolutely destitute by Britain’s brutal asylum polices. Every time you give them some money somebody eats and Farage cries.
hope-projects.org.uk/about-hope/
Donate here: cafdonate.cafonline.org/9696#!/Donat...
hope-projects.org.uk/about-hope/
Donate here: cafdonate.cafonline.org/9696#!/Donat...