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
If you’re deficient in vitD, this is the type of dose your GP is likeky to give you. It IS a quite standard loading dose.
But as usual, with ME, our bodies don’t quite always react the same way.
It has reminded me that I need to test though and start taking some again
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
🤞🤞 for you.
I’ve followed my last trial with HRV too but they all indicated a sharp downturn and a quick stop for me.
That looks like a really good step forward instead. Yay!!
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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
Yep
I feel it’s also making really hard to establish connexions too.
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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
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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.
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- Tina Katsaros - a PhD student working on research funded by ME Research UK, has organised a festive online community event to bring together people with lived experience of ME/CFS and researchers in the field this Christmas. The event will take place from to the 20th - 25th of December, and use the social media hashtag "#SpendChristmasWithME" and there are several ways you can get involved: • Wear something festive - and post a photo if you wish. • Watch a seasonal film from the comfort of your own home: • 20th of December: The Santa Clause & Jingle all the way • 21st of December: The Polar Express & Elf • 22nd of December: Die Hard & How the Grinch Stole Christmas • 23rd of December: Love Actually & The Holiday ⚫ 24th of December: Nightmare before Christmas & Home Alone Listen to your favourite Christmas song and share with the community what it is, and why you chose it. If you are able, donate the cost of your favourite Christmas drink and snack to ME Research UK via PayPal. PayPal: @researchuk ME INFORM. INFLUENCE. INVEST. RESEARCH UK SCC36942
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
Sepúlveda and Westemeier highlight several potential methodological issues with a recently published systematic review which concluded that 51% of people with long COVID met ME/CFS diagnostic criteria. Notably, the 13 articles included in the review do not meet conditions specified by the European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE): ? BIAS Included studies should use data collected for the purposes of answering the specific research question at hand – primary data. - Studies conducted in biased samples - samples that have been collected in such a way that means some members of the intended population are more or less likely to have been included than others, should be excluded. Studies included in the review should not use information based on self-reported ME/CFS diagnosis. - Studies using inappropriate case definitions – such as “CFS-like illness", should be excluded from the review. Duplicate reports - studies which use the same dataset, should also be excluded. Rather, where data from multiple studies overlap, the study with the largest number of participants should be selected for inclusion Sepúlveda and Westermeier Journal of Infection, 2024 ME RESEARCH UK INFORM. INFLUENCE. INVEST. SC036942
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
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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)
Screenshot of title, author list, abstract & plain language summary
Discriminating #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome and comorbid conditions using metabolomics in UK Biobank
Free fulltext:
www.nature.com/articles/s43...
#MEcfs #CFS #PwME