Sleepy Amy

Wow, thanks for sharing!

I don't know, I thought she was based in Scotland. Not sure whether she is NHS as well or just private.

Ah, are you in the same boat? Existing patient but no way to get hold of her / her secretary?

Well this was in September last year, that I started getting those autoreplies. I'm also due a follow up.

Hello ME/CFS and Long Covid folk of the UK - does anybody know if Dr Claire Taylor is long-term sick or has stopped her clinic for another reason? I saw her last year and she's been uncontactable since, just the same autoreply for months saying she's recovering from Covid. Anyone know if she's ok?

💙 xx

From now on if anyone asks me why I haven't been anywhere, done anything or spoken to anyone, I will simply point to the raccoon

A raccoon labelled "Me" lies on the floor between a black bin labelled "The NHS" and a toilet labled "Chronic illness" in a public toilet with a grubby floor

My life rn, no further comment needed

I have still experienced reduction in baseline after accessing in-person care. Just not with this in particular. It blows my mind that the sickest patients, the ones who need the most help, risk so much harm trying to access that help. Do better, medical community (evergreen sentiment I know).

Unfortunately it was £££ but the only way open to me at the time. I've been recommended further autonomic testing but have refused that. I was also recommended a CPET but that was an 'absolutely the fuck not'. Thankfully I could try meds without these.

The active stand was very tiring (and I couldn't do it now) but had important differences such as I wasn't strapped down, I felt much more in control and could hold my head in a comfortable position etc. Could be dx'd and prescribed meds just as easily.

Late to this piece but this vindicates my refusal to undergo repeat TTT to access meds for POTS. My refusal meant I was discharged from my long-time POTS specialists in London and had to go hunting for a new consultant. The new Dr was happy with an active stand instead.

My MP is not on the list :( I'm still waiting for a reply to the letter I sent him about it, expecting something bland and beige, he's a fence sitter and I've never seen him raise his head above the parapet on any issue.

Welfare reform: List of Labour MPs prepared to rebel against benefit changes - LabourList More than 20 Labour MPs have said publicly that they will not back the government when proposed welfare reforms are voted on in Parliament.

Do you have a Labour MP? Check if they're going to rebel against the benefit cuts or have spoken out against them 👇

labourlist.org/2025/04/spri...

Sign the Petition TAX WEALTH – DON'T CUT DISABILITY SUPPORT

chng.it/72gqxBsyQw

Petition by @richardburgon.bsky.social

I'm not well enough to go to this obv but if anyone reading this is able to then pls do 👇

'Slashing disability benefits is a cruel political choice', writes Jeremy Corbyn Former Labour leader Jeremy Corbyn argues none of the cuts announced today are necessary - and the government should tax the super-rich instead

There is an alternative to the government's cruelty: treat disabled people with care, dignity and respect.

My piece for @mirror.co.uk

www.mirror.co.uk/news/politic...

A head and shoulders screenshot of Mr Milchick from the TV show Severance. It is the scene from the Break Room in season 1, where he is listening to Helly R read the apology statement. He has vintage headphones on and a white shirt, and a light is shining in his face. The subtitle originally read "I'm afraid you don't mean it" but has been altered to read "I'm afraid you don't qualify".

Sorry Liz

Cool, I just finally sent off my PIP form describing in brutal detail how I need help to wash and can't cook at all and need an electric wheelchair etc, can't wait to see what job they come up with for me 🙃

Thank you. It's dominated my days for so long I can't believe I actually sent it. I think it'll take me a while to recover.

Fantasising about making Kendall complete PIP form after PIP form, Severance Break Room style. "I'm afraid you still don't qualify."

Just pressed send on my PIP application, two months of preparation and gruelling mental effort, evidence gathering and waking up in the night panicking that I've done it all wrong... just in time for Liz Kendall to announce the cuts 🙃 ahahaha I hate this country

Hey! 👋 I'm glad I caught your random FB post mentioning your handle here, I hardly ever go on there anymore.

'We shall have spring again' - Messages of hope and solidarity for 2025 “Wrong will be right, when Aslan comes in sight, At the sound of his roar, sorrows will be no more, When he bares his teeth, winter meets its death, And when he shakes his mane, we shall have spring a...

“I reached out to leading clinicians and some of the scientists who dedicate their time and energy, despite pitiful funding, to researching #ME #LongCovid etc I invited them to kindly share a ‘red leaf’ with us. They did not disappoint!”
Inspiring 💗

Ahh that's a shame, always gutting when you lose a mix and it can't be replaced. I've got all the tapes and all the vinyl still!

I did digitise them a while back but have yet to upload them anywhere! It's on my to-do list but you know how is. Nice, there was nothing where I grew up but at uni (Edinburgh) there was a dnb night called Manga that was pretty popular.

Yeah! I was obsessed with GL and had access to their press person thru the student newspaper, so I pestered them til they let me intern (unpaid, or paid in vinyl haha). Those parties sound fun. Another level like you say. Still have my old mixes on tape!

📌 For later. I did two summers' work experience at Good Looking in 99 and 00 so I knew this lot! Loved the tunes and spent most of my uni years DJing them. I didn't know MC Conrad very well but was really sad to hear that he'd died.

📌

Listen to disabled people - you might be surprised by some of the punitive policies that keep us in legislated poverty.

Most people think if things get really tough I will “get a second job, moonlight, sell some stuff etc”

Those options are OFF the table if disabled. There’s no contingency./3