Ooma Verse UK
@oomaverse.bsky.social
pwME. Disabled. Slightly anonymous in order to be free.
Midlands, UK
Previously troevs at the other place
Midlands, UK
Previously troevs at the other place
Pinned
Ooma Verse UK
@oomaverse.bsky.social
· Nov 13
Delighted to find a feed for Only Posts without reposts. Great to have this option
bsky.app/profile/did:...
bsky.app/profile/did:...
Reposted by Ooma Verse UK
1) 🇬🇧 For ME/CFS patients in the UK only: Action for ME has opened its 2025 Big Survey! Last time, it had more than 4000 respondents, but hopefully this one will be even bigger.
The deadline for submitting your response is 27 January 2026.
The deadline for submitting your response is 27 January 2026.
October 13, 2025 at 5:24 PM
1) 🇬🇧 For ME/CFS patients in the UK only: Action for ME has opened its 2025 Big Survey! Last time, it had more than 4000 respondents, but hopefully this one will be even bigger.
The deadline for submitting your response is 27 January 2026.
The deadline for submitting your response is 27 January 2026.
Reposted by Ooma Verse UK
A critique of pure stupidity: understanding Trump 2.0 www.theguardian.com/news/2025/oc...
A critique of pure stupidity: understanding Trump 2.0
If the first term of Donald Trump provoked anxiety over the fate of objective knowledge, the second has led to claims we live in a world-historical age of stupid, accelerated by big tech. But might th...
www.theguardian.com
October 2, 2025 at 7:05 AM
A critique of pure stupidity: understanding Trump 2.0 www.theguardian.com/news/2025/oc...
Reposted by Ooma Verse UK
I spent some time with OpenAI's new AI video app Sora. Not just slop but ragebait, fake crimes and women splattered with white goo. The implications of all of this are horrifying.
October 1, 2025 at 3:15 PM
I spent some time with OpenAI's new AI video app Sora. Not just slop but ragebait, fake crimes and women splattered with white goo. The implications of all of this are horrifying.
Reposted by Ooma Verse UK
It’s been five years since John Prine died of COVID-19. If you’re so inclined (and able — it’s long), here’s an essay I wrote about how his songs helped me accept a life with the debilitating, deeply marginalized chronic illness ME/CFS. 1/3
How Singer-Songwriter John Prine Helped Me Accept A Life of Illness
It’s been a year since Prine died of COVID-19. His death made me reflect on what it means to be sick and how his songs helped me learn to…
m-lazell-fairman.medium.com
April 7, 2025 at 11:21 PM
It’s been five years since John Prine died of COVID-19. If you’re so inclined (and able — it’s long), here’s an essay I wrote about how his songs helped me accept a life with the debilitating, deeply marginalized chronic illness ME/CFS. 1/3
Reposted by Ooma Verse UK
“I was in a constant state of hypervigilance. I was completely traumatised.”
Oxevision cameras are being installed above patients’ beds in NHS mental health units causing fear, retraumatisation and even linked to deaths.
This isnt safety. This is surveillance.
#StopOxevision tinyurl.com/4wmvmn53
Oxevision cameras are being installed above patients’ beds in NHS mental health units causing fear, retraumatisation and even linked to deaths.
This isnt safety. This is surveillance.
#StopOxevision tinyurl.com/4wmvmn53
Is it safe? Is it spying? Disquiet over NHS ‘magic eye’ surveillance camera in mental health units
Campaign calls for investigation into the use of Oxevison amid concerns over care and its effect on patients
tinyurl.com
April 5, 2025 at 5:41 PM
“I was in a constant state of hypervigilance. I was completely traumatised.”
Oxevision cameras are being installed above patients’ beds in NHS mental health units causing fear, retraumatisation and even linked to deaths.
This isnt safety. This is surveillance.
#StopOxevision tinyurl.com/4wmvmn53
Oxevision cameras are being installed above patients’ beds in NHS mental health units causing fear, retraumatisation and even linked to deaths.
This isnt safety. This is surveillance.
#StopOxevision tinyurl.com/4wmvmn53
Reposted by Ooma Verse UK
Were you furloughed? Did you think that when the bill was due disabled people would be the ones expected to pay for it?
Five years on and for those of us disabled by covid we can never forget. But for those who are lucky enough to not have a daily reminder..?
www.theguardian.com/uk-news/2025...
Five years on and for those of us disabled by covid we can never forget. But for those who are lucky enough to not have a daily reminder..?
www.theguardian.com/uk-news/2025...
March 20, 2025 at 4:50 PM
Were you furloughed? Did you think that when the bill was due disabled people would be the ones expected to pay for it?
Five years on and for those of us disabled by covid we can never forget. But for those who are lucky enough to not have a daily reminder..?
www.theguardian.com/uk-news/2025...
Five years on and for those of us disabled by covid we can never forget. But for those who are lucky enough to not have a daily reminder..?
www.theguardian.com/uk-news/2025...
Reposted by Ooma Verse UK
Our current punitive welfare system has led to the deaths of hundreds of Disabled people at the hands of benefits cuts.
The Government not only refuses to fix this - but is placing us at risk of further punishment and surveillance.
Let us be clear: this is a political choice.
The Government not only refuses to fix this - but is placing us at risk of further punishment and surveillance.
Let us be clear: this is a political choice.
March 20, 2025 at 11:53 AM
Our current punitive welfare system has led to the deaths of hundreds of Disabled people at the hands of benefits cuts.
The Government not only refuses to fix this - but is placing us at risk of further punishment and surveillance.
Let us be clear: this is a political choice.
The Government not only refuses to fix this - but is placing us at risk of further punishment and surveillance.
Let us be clear: this is a political choice.
Reposted by Ooma Verse UK
We can’t fact-check our way out of this crisis. Disordered discourse isn’t just about false claims - it reshapes power, identity, and how people engage with reality itself. There’s no single fix, but one crucial pillar of the response is education.
March 1, 2025 at 3:05 PM
We can’t fact-check our way out of this crisis. Disordered discourse isn’t just about false claims - it reshapes power, identity, and how people engage with reality itself. There’s no single fix, but one crucial pillar of the response is education.
Reposted by Ooma Verse UK
At best this despicable practice is forcing disabled people to give up the care they desperately need, at worst it is causing significant distress & pushing some to consider severe drastic action!
March 2, 2025 at 7:03 PM
At best this despicable practice is forcing disabled people to give up the care they desperately need, at worst it is causing significant distress & pushing some to consider severe drastic action!
Reposted by Ooma Verse UK
We are very concerned about the increasing numbers of disabled people on benefits receiving huge insurmountable invoices for care charges dating back years!
March 2, 2025 at 6:57 PM
We are very concerned about the increasing numbers of disabled people on benefits receiving huge insurmountable invoices for care charges dating back years!
Reposted by Ooma Verse UK
What we’re witnessing in America is what happens when disordered discourse captures a political party, then the state itself. The Republican Party was the first to fall - abandoning truth for conspiracy, ideology for grievance, and policy for performative outrage.
February 28, 2025 at 9:47 PM
What we’re witnessing in America is what happens when disordered discourse captures a political party, then the state itself. The Republican Party was the first to fall - abandoning truth for conspiracy, ideology for grievance, and policy for performative outrage.
Reposted by Ooma Verse UK
www.bigissue.com/news/social-...
It's tempting to say this is "batshit", or "incompetence", but it's not. It was a deliberately evil and punitive policy to start with and Labour are continuing it.
Fucking thatcherite bastards
It's tempting to say this is "batshit", or "incompetence", but it's not. It was a deliberately evil and punitive policy to start with and Labour are continuing it.
Fucking thatcherite bastards
DWP blew tens of millions in taxpayer cash on fighting disability benefit claims
The latest figures revealed by Big Issue mean that the DWP has spent more than £400m on fighting disability benefit appeals since 2013.
www.bigissue.com
February 26, 2025 at 6:31 PM
www.bigissue.com/news/social-...
It's tempting to say this is "batshit", or "incompetence", but it's not. It was a deliberately evil and punitive policy to start with and Labour are continuing it.
Fucking thatcherite bastards
It's tempting to say this is "batshit", or "incompetence", but it's not. It was a deliberately evil and punitive policy to start with and Labour are continuing it.
Fucking thatcherite bastards
Reposted by Ooma Verse UK
Fun fact: The Daily Mail spent years stealing mine (and other bloggers) photos and running them with the caption:
"Copyright: Internet"
(So while I'm pro this sort of thing, let's not pretend the papers are acting in anything other than self-interest)
"Copyright: Internet"
(So while I'm pro this sort of thing, let's not pretend the papers are acting in anything other than self-interest)
Every major UK newspaper - left, right, broadsheet, tabloid - is running a front page campaign against copyright carveouts for AI training.
I can't remember the last time any political cause had such broad support, let alone one so anti-big tech and so economically consequential.
I can't remember the last time any political cause had such broad support, let alone one so anti-big tech and so economically consequential.
February 25, 2025 at 9:53 AM
Fun fact: The Daily Mail spent years stealing mine (and other bloggers) photos and running them with the caption:
"Copyright: Internet"
(So while I'm pro this sort of thing, let's not pretend the papers are acting in anything other than self-interest)
"Copyright: Internet"
(So while I'm pro this sort of thing, let's not pretend the papers are acting in anything other than self-interest)
I had a Customer Satisfaction Survey from M&S in my inbox so was able to tell them how unlikely I am currently to buy from or recommend them while they advertise with platforms like this as they are funding hate and division.
Marks & Spencer says: "We understand the diverse make-up of our customers & are focused on ensuring that inclusivity is embedded into the way we do business".
Meanwhile they're advertising on GB News, which relentlessly attacks diversity & inclusion. Take action:
actionstorm.org/petitions/ma...
Meanwhile they're advertising on GB News, which relentlessly attacks diversity & inclusion. Take action:
actionstorm.org/petitions/ma...
February 25, 2025 at 12:33 PM
I had a Customer Satisfaction Survey from M&S in my inbox so was able to tell them how unlikely I am currently to buy from or recommend them while they advertise with platforms like this as they are funding hate and division.
Reposted by Ooma Verse UK
#NEISvoid compression socks question - my (bare) feet can get red and hot. Because of some high HR stuff going on, I'm trying compression socks. But now, with those on, my feet are freezing. Is this a thing? If so, anything I can do about it?
February 24, 2025 at 7:21 PM
#NEISvoid compression socks question - my (bare) feet can get red and hot. Because of some high HR stuff going on, I'm trying compression socks. But now, with those on, my feet are freezing. Is this a thing? If so, anything I can do about it?
Reposted by Ooma Verse UK
How is it acceptable that disability support workers can prepare food in disabled people's homes with zero kitchen safety skills?
I've had:
- Gas left running.
- Plastic & hair in meals - often.
- Hot food put underneath raw eggs in the fridge.
- Raw chicken kept for my cat (it's poisonous).
#NDIS
I've had:
- Gas left running.
- Plastic & hair in meals - often.
- Hot food put underneath raw eggs in the fridge.
- Raw chicken kept for my cat (it's poisonous).
#NDIS
February 24, 2025 at 1:59 AM
How is it acceptable that disability support workers can prepare food in disabled people's homes with zero kitchen safety skills?
I've had:
- Gas left running.
- Plastic & hair in meals - often.
- Hot food put underneath raw eggs in the fridge.
- Raw chicken kept for my cat (it's poisonous).
#NDIS
I've had:
- Gas left running.
- Plastic & hair in meals - often.
- Hot food put underneath raw eggs in the fridge.
- Raw chicken kept for my cat (it's poisonous).
#NDIS
Reposted by Ooma Verse UK
What are some potential medical explanations for consistently normal systolic blood pressure with consistently high diastolic? Numbers like 120/100 110/95
February 19, 2025 at 7:26 PM
What are some potential medical explanations for consistently normal systolic blood pressure with consistently high diastolic? Numbers like 120/100 110/95
Reposted by Ooma Verse UK
this is a really fascinating and thoughtful piece about how to counter misinformation.
@sheencr.bsky.social and @martinmckee.bsky.social might be interested!
@sheencr.bsky.social and @martinmckee.bsky.social might be interested!
Countering #misinformation isn’t just about the facts—it’s about how those facts spread through social networks and communities. #Science being right isn’t enough; it must be accepted within social circles to make an impact.
https://buff.ly/4hFLwB1
By Anne Toomey @paceuniversity.bsky.social
https://buff.ly/4hFLwB1
By Anne Toomey @paceuniversity.bsky.social
February 18, 2025 at 3:20 PM
this is a really fascinating and thoughtful piece about how to counter misinformation.
@sheencr.bsky.social and @martinmckee.bsky.social might be interested!
@sheencr.bsky.social and @martinmckee.bsky.social might be interested!
Reposted by Ooma Verse UK
How do you like your gaslighting? In a special Long COVID clinic that accuses you of not doing enough to get better, or from your healthcare provider who insists you’re fine and it’s all in your head?
February 12, 2025 at 7:38 PM
How do you like your gaslighting? In a special Long COVID clinic that accuses you of not doing enough to get better, or from your healthcare provider who insists you’re fine and it’s all in your head?
Reposted by Ooma Verse UK
Reposted by Ooma Verse UK
Questions for Visible users, please!
I'm just starting the paid version of #Visible for #ME . I'm testing out the Exertion alarm by trying to overexert myself 😬. I really want to see how loud it is, & if I can get my smart watch to beep too.
Haven't managed it yet, my back is saying no.
I'm just starting the paid version of #Visible for #ME . I'm testing out the Exertion alarm by trying to overexert myself 😬. I really want to see how loud it is, & if I can get my smart watch to beep too.
Haven't managed it yet, my back is saying no.
February 10, 2025 at 2:14 PM
Reposted by Ooma Verse UK
Sunrise looking west at the Rocky Mountains this morning, from Gunbarrel Hill (NE of Boulder).
February 9, 2025 at 2:57 PM
Sunrise looking west at the Rocky Mountains this morning, from Gunbarrel Hill (NE of Boulder).
Reposted by Ooma Verse UK
A few years ago while on a walk/roll with my wife, a man walking his dog came up to me and patted me on the head like a pet and said, ‘It’s good to see you out and about’.
What’s the most insulting thing that’s happened to you as a person with a disability or neurodivergent?
What’s the most insulting thing that’s happened to you as a person with a disability or neurodivergent?
February 9, 2025 at 4:17 PM
A few years ago while on a walk/roll with my wife, a man walking his dog came up to me and patted me on the head like a pet and said, ‘It’s good to see you out and about’.
What’s the most insulting thing that’s happened to you as a person with a disability or neurodivergent?
What’s the most insulting thing that’s happened to you as a person with a disability or neurodivergent?
Reposted by Ooma Verse UK
Silly thought, anyone fancy doing a portrait of me? Would love to work with a queer artist. Where would I even start with that?
February 8, 2025 at 1:13 PM
Silly thought, anyone fancy doing a portrait of me? Would love to work with a queer artist. Where would I even start with that?
Reposted by Ooma Verse UK
Update husband/hospital post
We are in two (or even more) minds about this. The program they offer is hardcore CBT and it is aimed at recovery (so not at coping or pacing). They claim that getting your days as evenly as possible (regular sleep pattern, physical activity spread throughout the day 1/
We are in two (or even more) minds about this. The program they offer is hardcore CBT and it is aimed at recovery (so not at coping or pacing). They claim that getting your days as evenly as possible (regular sleep pattern, physical activity spread throughout the day 1/
February 5, 2025 at 5:44 PM
Update husband/hospital post
We are in two (or even more) minds about this. The program they offer is hardcore CBT and it is aimed at recovery (so not at coping or pacing). They claim that getting your days as evenly as possible (regular sleep pattern, physical activity spread throughout the day 1/
We are in two (or even more) minds about this. The program they offer is hardcore CBT and it is aimed at recovery (so not at coping or pacing). They claim that getting your days as evenly as possible (regular sleep pattern, physical activity spread throughout the day 1/