sabineg.bsky.social - Profile | ThreadSky | a Reddit-style client for Bluesky

Yes, PIP partly compensates for underfunded services. People are more disabled because they didn’t get early treatment—or have to fund private care that should’ve been NHS or social care. The answer isn’t to strip PIP. It’s to fix the system that failed them. #WelfareNotWarfare

submitted 38 days ago • 3 comments

Nature is so beautiful 😻

submitted 93 days ago • 0 comments

If you have the spoons, please consider signing in. We really don’t want to become like the US with no monitoring at all…..

submitted 94 days ago • 0 comments

It’s an interesting study with levels that look totally crazy until you realise it’s a weekly dose rather than a daily one. But as usual with ME, going slowly helps

submitted 94 days ago • 0 comments

A shock to no-one: disability benefits are net positive for economy, society. www.bigissue.com/news/social-... Besides right wingers, 'centrists', Rachel Reeves and Labour. #PIP #UniversalCredit #BenefitsBritain #DWP #UKLabour

submitted 113 days ago • 1 comment

I'm feeling quite pleased with myself because I finished a short story this morning. I don't know whether it's any good, but it's nice to have finished something. #writingCommunity #writing

submitted 113 days ago • 1 comment

It can be frustrating if something you've written isn't really working out and it's not as good as you thought it was going to be, but no writing is wasted because it's all practice. #WritingCommunity #AuthorSky

submitted 113 days ago • 2 comments

A really good article on the review of the Cochrane article on ME

submitted 111 days ago • 0 comments

Remember: ‘liking’ a post has no effect on its visibility here (unlike on Twitter). To help good or informative posts get seen by other people, you have you repost them. This feels like a big part of why it can often feel so quite here.

submitted 119 days ago • 4 comments

Pls DM me names of any solicitors or barristers who are able to handle cases with medical issues arising on V Severe ME (such as tackling inappropriate safeguarding against carers, or psychologising) 🙏🏻 @actionforme.bsky.social @swastrosarah.bsky.social @nicolajeffery.bsky.social

submitted 119 days ago • 3 comments

The #FUNCAP for patients diagnosed with #MECFS is now available as a free app for iphone: Self-evaluate, track and record your FUNctional CAPacity and your degrees of #PEM: apps.apple.com/app/funcap/i... @tschei.bsky.social 💙🫂💙

submitted 160 days ago • 1 comment

Many of us here knew Debbie on Twitter back when she was able to use her phone to communicate. Sadly, she lost that ability a few years ago now. We mustn’t forget Debbie & those like her, who lie both unseen & unheard in darkened rooms 💔 😪 #MillionsMissing #MEcfs #LongCovid t.co/8NtrsI3S6C

submitted 161 days ago • 8 comments

A story I have never told—in 2020, when my wife and I were both very sick with covid, a stranger, a mum from our kids' nursery, offered to look after our (covid-positive) kids if my wife and I were both incapacitated in hospital. Her offer and the email she wrote have stuck with me ever since.

submitted 162 days ago • 11 comments

ME Research UK: PhD student @tinakatsaros.bsky.social who is working on research funded by MERUK, has organised a festive online event which will take place from to the 20th – 25th of December, and use the social media hashtag #SpendChristmasWithME. Find out more: tinyurl.com/4z2uc3ta #MECFS #CFS

submitted 168 days ago • 0 comments

ME Research UK: Drs Nuno Sepúlveda Francisco Westermeier – researchers who have previously worked on projects funded by ME Research UK, have written a letter to the editor of Journal of Infection in response to a recently published systematic review tinyurl.com/4y7wz9ev #LongCovid #MEcfs #CFS #PwME

submitted 168 days ago • 0 comments

The person impersonating Eric started to follow me too. I would have fallen for it without the warning

submitted 169 days ago • 0 comments

If you have the time or the spoons, please sign A protocol for very severe ME patients is essential to ensure good care (and no more death)

submitted 170 days ago • 0 comments

Discriminating #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome and comorbid conditions using metabolomics in UK Biobank Free fulltext: www.nature.com/articles/s43... #MEcfs #CFS #PwME

submitted 176 days ago • 1 comment

An amazing paper. All thanks to ME and LC sufferers. From those who answered the surveys to those who wrote the paper. 🎉🎉 to patient led research

submitted 171 days ago • 0 comments

The thing is pacing is very much about not crashing, aka lowering your baseline/getting worse. For some people, it might also help recovering but that’s not the aim of pacing. Makes you wonder why they did the study in the first place….

submitted 171 days ago • 1 comment

A really important news LC isn’t FND! (Yes we knew but you know…)

submitted 176 days ago • 0 comments

L'#EMSFC est en *article à la une " sur le Wikipédia en anglais ! Et en plus l'article est très complet !