Ooma Verse UK's Avatar

Ooma Verse UK

@oomaverse.bsky.social

pwME. Disabled. Slightly anonymous in order to be free. Midlands, UK Previously troevs at the other place

160 Followers  |  343 Following  |  49 Posts  |  Joined: 11.11.2024  |  2.1325

Latest posts by oomaverse.bsky.social on Bluesky

Preview
Wedding Photo Booth Company Exposes Customers’ Drunken Photos ‘Curator Live’, a popular photo booth company for weddings and other events, is exposing all sorts of unsuspecting people’s photos.

A popular photo booth company is exposing customers' drunken photos. Researcher found it when went to a wedding, gave his phone number to the booth, was sent the API. Found random people's other photos www.404media.co/wedding-phot...

03.02.2026 14:17 — 👍 87    🔁 21    💬 3    📌 2
Preview
Peter Mandelson: Epstein is like dog muck; the smell won’t go away Peter Mandelson was sacked as ambassador to the US because of his links to Jeffrey Epstein. Now, he has resigned from the Labour Party. Is this the end for him?

Update: Mandelson *has* now remembered the 10k-ish for from a convicted sex offender for his husband's osteopathy course that he initially could not place & did not declare under the v clear rules on gifts, But it's ok everyone that was 'not a consequential decision' www.thetimes.com/uk/politics/...

02.02.2026 21:05 — 👍 176    🔁 42    💬 14    📌 2

Today I tried to explain to a new carer how to best help me put on my compression stockings.

He didn't like that and replied: "Why can't I just do it my way? You don't have to do anything"

They seem to forget that I am actually inhabiting the body they are handling and doing things to.

02.02.2026 10:09 — 👍 10    🔁 1    💬 3    📌 0

I was a White House ethics lawyer.

I used to advise people not to even accept a free cup of coffee from someone who had interests before them. And staff followed those rules.

I can’t even find the words to describe the scale of Trump’s corruption here.

02.02.2026 07:28 — 👍 7659    🔁 3163    💬 172    📌 92
Preview
DWP study shows their health assessors feel 'despised' - and are quitting in droves DWP staff carrying out assessments reached the same conclusion as disabled people - the department is 'punitive, exhausting and inflexible'

DWP study shows their health assessors feel ‘despised’ – and are quitting in droves (via @thecanaryuk.bsky.social) www.thecanary.co/uk/analysis/...

02.02.2026 15:17 — 👍 17    🔁 3    💬 2    📌 0
Video thumbnail

This is Zeus. He's 13 and can't howl quite like he used to. But that doesn't stop him from stepping pup when his community needs him. 14/10 #SeniorPupSaturday (IG: zeustheoldiegoldie)

31.01.2026 17:24 — 👍 7181    🔁 626    💬 218    📌 71
Preview
DNS update Two bits of news from me. Firstly, I’d like to explain the lack of news stories from DNS over the last few weeks. Early last month, I underwent heart bypass surgery, and after eight days… | John Pring DNS update Two bits of news from me. Firstly, I’d like to explain the lack of news stories from DNS over the last few weeks. Early last month, I underwent heart bypass surgery, and after eight days...

Two bits of news from me, firstly about the future of Disability News Service, and secondly an explanation for the lack of news stories from DNS over the last few weeks:
www.linkedin.com/posts/john-p...

01.02.2026 14:00 — 👍 15    🔁 6    💬 4    📌 3
Trial By Error: New Medical Anthropology Book on Chronic Illness Triggers Controversy | Virology Blog By David Tuller, DrPH While I was on medical leave for the last few weeks, the fascist regime's brownshirts executed two people protesting the military ...

Here's my take on some of the debate over Invisible Illness, the new medical anthropology book that has triggered debates and controversy. This post examines the back and forth over the chapter that includes PACE and the history of the creation of the CFS construct.

virology.ws/2026/02/01/t...

01.02.2026 18:56 — 👍 31    🔁 13    💬 3    📌 1

Saw your post via this feed
bsky.app/profile/did:...

01.02.2026 18:38 — 👍 0    🔁 0    💬 0    📌 0

💙

31.01.2026 23:56 — 👍 0    🔁 0    💬 0    📌 0

It sucks so much 💙

31.01.2026 23:49 — 👍 1    🔁 0    💬 0    📌 0

Who else has M.E. and/or other complex chronic diseases and takes Micronized PEA? I'm looking for your experiences!

After ~two years of waiting, I had a consultation with my Dr. regarding my M.E. and more; they recommended that I take 1200mg daily.

#MyalgicEncephelomyelitis #MicronizedPEA #ME #CFS

31.01.2026 21:17 — 👍 1    🔁 1    💬 1    📌 0

I found the first investigative file from the first complainant against Epstein in 2005.

There are descriptions from the officer, over several interviews of the girl, of her pulling her knees up on the chair, drawing doodles, & the officer high-fiving her to keep her calm as she speaks of horror.

31.01.2026 20:57 — 👍 2982    🔁 1226    💬 49    📌 193

Forgot my manners 🤦 Thank you for thinking of me. I'm up for accessible science that applies to us cuz goodness knows I struggle but I try!

30.01.2026 12:44 — 👍 1    🔁 0    💬 0    📌 0

Ack hate that when it's really useful & then absolutely not. Maybe thanks. Brain boom today.

30.01.2026 12:43 — 👍 1    🔁 0    💬 1    📌 0

Has anyone here discontinued nortriptyline?

I'm on the lowest dose of 10 mg, and I was told I can just stop it. I've been on it for two or three years I think?

We are trying to figure out if I do have a little bit of pots or if this medication has increased my heart rate. Literature says

30.01.2026 06:19 — 👍 2    🔁 1    💬 4    📌 0

I'm desperately looking for people who have the same #dysautonomia as me.

Blunted or dropping #bloodpressure during effort. Can't push more than 110-120 of systolic for a max heart rate of 170-180bpm.

Recorded during each stress exercise test at cardio.

This does NOT fit the reports in ME/CFS!

29.01.2026 06:31 — 👍 0    🔁 1    💬 2    📌 0

Ouch 😯

28.01.2026 18:19 — 👍 0    🔁 0    💬 0    📌 0

Your tenacity is awesome. I wish they would hear you.

28.01.2026 18:18 — 👍 1    🔁 0    💬 1    📌 0
Post image

Can anyone recommend a gooseneck holder that works for a tablet and a phone? Something with a pretty long neck on it that's also sturdy would be great. It's mainly for PT but also so I stop straining my body and for high fatigue days.
Thanks!

#spoonie #TVSky
#techsky #chronicpain
#MECFS

28.01.2026 01:44 — 👍 3    🔁 1    💬 2    📌 0

To the entire #ME/CFS, how one can lose weight with exercise intolerance and while on anti-psychotics and anti-depressants. Any tips/hacks would be appreciated!

28.01.2026 05:37 — 👍 1    🔁 1    💬 1    📌 0

The fantastic, legendary @bettinagrande.bsky.social speaks out for people with MECFS: (machine translation from German) "They are, in a sense, constantly under general suspicion – this is an enormous burden and naturally has an internal impact." So grateful for this caring professional and her work.

28.01.2026 14:07 — 👍 7    🔁 3    💬 0    📌 0

39 years of repeating..
"No"
"No, sorry, I can't do that
"No, sorry, I can't do that, because I have #ME
"No, it wouldn't 'do me good', thanks
"No, there's still no treatment for #ME
"No, Drs still aren't medically qualified to treat #pwME
"Yes, #ME can be fatal"
🤦‍♀️😫

28.01.2026 14:33 — 👍 13    🔁 7    💬 0    📌 0

This photo was sent to me by someone else who was exposed to HC on Saturday.

They added that they also felt extremely tired, confused, had a sore thoat and felt nauseous Saturday night and Sunday. They told me that they have been exposed to teargas before but had never had this experience.

27.01.2026 23:46 — 👍 356    🔁 193    💬 14    📌 15
BILLY BRAGG - CITY OF HEROES
YouTube video by Billy Bragg BILLY BRAGG - CITY OF HEROES

New Billy Bragg song

“City of Heroes”

About the Minnesota Resistance

youtu.be/IKOW2ZikGW8?...

28.01.2026 14:56 — 👍 4    🔁 1    💬 0    📌 0

We don't need books to understand that what's happening is wrong.

28.01.2026 17:31 — 👍 201    🔁 35    💬 3    📌 0
Bruce Springsteen - Streets Of Minneapolis (Official Audio)
YouTube video by Bruce Springsteen Bruce Springsteen - Streets Of Minneapolis (Official Audio)

If Springsteen writes and records a protest song about you… you are fucked.

youtu.be/wWKSoxG1K7w?...

28.01.2026 17:28 — 👍 411    🔁 122    💬 20    📌 9
Chart showing Health-Related Quality of Life

Population overall scores 0.85 out of 1

Then a list follows beginning with 
Prostate cancer - 0.79

And including the following conditions:

Sleep apnea
Breast cancer
Inguinal hernia
Heart AMI
Abdominal hernia
Diabetes
Colon cancer
Heart angina
Heart 
Diabetes 
Stroke
Lung cancer
Rheumatoid arthritis
Chronic renal failure
Sclerosis
Schizophrenia
COPD
Bleeding ulcer
Depression - 0.62

And then below that, circled in yellow,
ME/CFS is 0.47

Chart showing Health-Related Quality of Life Population overall scores 0.85 out of 1 Then a list follows beginning with Prostate cancer - 0.79 And including the following conditions: Sleep apnea Breast cancer Inguinal hernia Heart AMI Abdominal hernia Diabetes Colon cancer Heart angina Heart Diabetes Stroke Lung cancer Rheumatoid arthritis Chronic renal failure Sclerosis Schizophrenia COPD Bleeding ulcer Depression - 0.62 And then below that, circled in yellow, ME/CFS is 0.47

It doesn’t happen to me that often anymore, thankfully, but it does feel real bad when I have to convince other disabled people that no, with disabilities like ME/CFS, we typically don’t have quality of life comparable to non-disabled people. Not by a long shot.

28.01.2026 04:23 — 👍 53    🔁 9    💬 7    📌 0

"your body doesn’t respond to exertion in the normal biological way and you don’t recover properly from even trivial effort. It’s not the presence of fatigue that disables me: it’s the absence of energy"
#pwME #pwLC

27.01.2026 22:38 — 👍 6    🔁 1    💬 0    📌 0

This isn't a crisis we fact-check our way out of, we need to build something bigger and more radical to resist the tide of authoritarianism engulfing our democracies. We can't wait for institutions to act, it's up to us to organise.

25.01.2026 09:29 — 👍 507    🔁 115    💬 8    📌 4

@oomaverse is following 20 prominent accounts