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

Nature is so beautiful 😻

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

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

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

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

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

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

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.

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

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 💙🫂💙

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

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.

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

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

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

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)

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

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

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….

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

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

The entry in Wiki for ME/CFS actually makes sense! 🎉🎉🎉 In some ways, a big victory as it is putting ME as a severe illness in a prominent place.

I’m proud to be woke af, because this is the true meaning of being a selfless member of society!

A wonderful resource, full of covid research. www.zotero.org/groups/50061...

If you have #longcovid or #mecfs - How much steps can you do per day ?

Great news #pwME #pwLC Marco has arrived. For those who aren't aware Marco is a co- founder of #UniteToFight2024 and a fierce advocate for all with #LongCovid and #Myalgicencephalomyelitis. He is well worth a follow @etzsepp.bsky.social.

Do t forget your mouth as a route for Covid!!

Gorgeous male Bearded Tit! 😍 #birds 🐦🪶

Struggling w/ capacity finding ppl via starter packs etc so, looking to connect w/: Ppl in the ME/CFS & disabled community, especially w/ severe/v severe ME, located in "Australia" or w/ a focus on disability justice. Queer is a bonus & no Zionists pls. Appreciate anyone who cares to boost this :)

What’s even worse is that titles often don’t reflect what is in the article itself (and is written by another person, not the article writer).

I am one of 100s of scientists in the the World that is Watching the U.S. Deal With Bird Flu, and It’s Scary! Today, my opinion piece on the NY Times. Let's hope we take more serious epidemics and pandemics and deal with them before they emerge. www.nytimes.com/2024/11/19/o...

A really important read. Are we going down the route of Covid all over again?

I appreciate all of you who use the Alt-text description for the images you post. As a blind dude I feel so much more included here. For those of you who forget: Did you know there’s a reminder in Settings/Accessibility to toggle on & then it won’t let you post image without Alt-text. Thanks 🙏😎

Good morning ✨ #thicktrunktuesday #snow #WinterWonderland

OMG, a whole lot of Great Barrington Declaration/Brownstone/anti-vaxx/RFK Jr folks arrived here en masse Naomi Wolf is here! I was proud to be quoted in this piece about her very extreme, bizarre, dangerous anti-vaxx activism www.bbc.com/news/world-u...

MCAS is difficult to pinpoint but has been linked with many diseases, incl ME and POTS A reminder to always check if your symptoms could shift with (over the counter) MCAS treatment such as h1 anti histamine. A low hanging fruit that make huge differences. It helped me with both POTS & brain fog

I used to wonder why we needed a review every 10 years to tell us there are a massive structural health inequalities in this country and that to solve them we need to make the country more equal, not encourage people to eat less, take more walks etc, but now I see we need one of these every 5 years!

👏👏👏 Still this very individualist approach that assumes you are somehow in full control of your life (so everything is solely your responsibility) instead of looking at the impact of the environment on people. The finger pointing isn’t going to create more beds or ensure we have enough doctors

I really love those puffins photographs. Really happy @carlbovisnature.bsky.social has joined BS too

‘Societal dismissal leads to scientific neglect, and a lack of research becomes fodder for further skepticism. I understood these dynamics only after interviewing social scientists, disability scholars and patients themselves, whose voices are often absent or minimized in the media.’ 1/

My Christmas blog is a 'catalogue' of sorts with details of all my bird products & links & details of how to order!😊 Perfect Christmas presents for nature lovers!😀🎁 ko-fi.com/post/Lots-of... Please have a browse♥️ (Always believed only my Twitter followers would buy my products before) Thank you!

With number like this, everyone must know somebody who has lost their job due to Covid or LC. But people still don’t seem to realise how dangerous Covid can be. Why are people not scared?

@medsky.social a label for ME and LC would really helpful. So would one for dysautonomia/POTS So many people affected nowadays but finding information is so much harder

Caution about a certain PoTS and Dysautonomia clinician’s thinking and methods for patients with PoTS and severe ME. I would rather not link posts from other forms of social media, but this summary isn’t available elsewhere to my knowledge. www.reddit.com/r/cfs/commen...

Experience is important. But just as important is listening to patients and believing them And updating outdated ideas It might help women getting their endometriosis diagnosis quicker or a diagnosis instead of being told they’re anxious. It might avoid damaging advice like exercise for ME/CFS

PSA for newbies: Please include ALT text on your images. This is an inclusive space for blind and visually impaired people. Don't arrive late to the party and ignore a bunch of people. Also, please share this skeet, rather than liking it, to ensure the message gets delivered. Thanks!

If you are on this platform for #MECFS or #Longcovid & have not found @isabelrb.bsky.social - You can follow her here ⬆️ And @renegaderesearch.bsky.social here ⬆️ And @remissionbiome.bsky.social here ⬆️

Something easy to do. That I think most of us do. If only because it’s easier to read. But I didn’t know it also helps text-to-speech screen readers.

As this bill is pushed through Parliament, I’m finding myself quite worried about what it will mean for us, disabled people. Oh, not just now. But in 5, 10 years time when the weight of supporting disabled people will have increased 10 fold (due to LC)