Arthur
@unreal_arthur
ME Patient-ly Waiting for Biomedical Research | Volunteer @WeCrunchME #GreatestMEdicalScandal http://unrealarthur.bsky.social
1/3 Update: Good News! MP wrote to the minister and this was their reply, "I can confirm that the guidance regarding cognitive behavioural therapy and graded exercise therapy for myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS) is outdated and will be removed..."
1/9 Yes. The MOD have updated their recruitment criteria, here's a thread on the recent changes regarding #MyalgicEncephalomyelitis... it's shocking! 🧵
An excellent fundraiser for ME/CFS “We are raising funds for the WE&ME Foundation, which supports ME/CFS research and awareness. With your help, we want to support the creation of a biobank at the Medical University of Vienna.” gofundme.com/f/zeit-zum-hin…
After a number of requests I’ve made all of the TV clips on my YouTube channel public. They’re now searchable on and will appear on my homepage and in the videos tab. youtube.com/@brokenbattery
‘If you’re disabled, you’re not ill.’ Sir Charlie Mayfield (author of the Keep Britain Working review) This is who’s shaping UK disability employment policy. Shocking, he doesn’t even understand the basics. I’m disabled because I’m chronically ill with #MECFS.
Sir Charlie Mayfield, author of the Keep Britain Working Review, endorses the BioPsychoSocial model (mispronounces it) and also says he thinks we should mainly focus on the Psycho and Social parts…
A patient who created a popular sheet on how to deal with somebody in postexertional malaise (PEM) has adapted it for hospital staff #MEcfs #LongCovid
Anddd so it begins. Today I was asked how many times I’ve left my hospital room… Then how much am I getting out of bed? You’ll lose muscle you know if you just lay in bed. What challenges do you think we can set? Sit in the chair? 1/3
1️⃣🧵 NEW: The government’s Keep Britain Working report claims to tackle the UK’s crisis of ill health & economic inactivity. But it never mentions Long Covid. Not once. Not the pandemic either. That’s not a small oversight. It’s a fundamental flaw. 🔗 gov.uk/government/pub…
Very excited for this: Wednesday 5th November at 6pm (GMT) I'll be talking to @BinitaKane about all things hydration, appetite, and blood sugar in POTS. Link to join live on YouTube: youtube.com/live/Ar0X_N3T2…
Less than an hour to go! (Im nervous as hell, please be nice in the Q&A!)
Very excited for this: Wednesday 5th November at 6pm (GMT) I'll be talking to @BinitaKane about all things hydration, appetite, and blood sugar in POTS. Link to join live on YouTube: youtube.com/live/Ar0X_N3T2…
Twelve years ago, Stanford Medicine geneticist Ron Davis shifted his focus to study severe chronic fatigue syndrome — the disease that has profoundly affected his son. Today, each new discovery, big or small, gives him hope for a path forward. stan.md/4nqAOBu
Children with Long Covid Heard At The UK COVID Inquiry | Long Covid Kids | 23rd October 2025 Available on #YouTube & #TicTock youtu.be/3wT4lzreDbw
youtube.com
YouTube
Children with Long Covid Heard At The UK COVID Inquiry | Long Covid...
You can read Rosie's post here 👇 thereforme.uk/p/sensory-hell…
thereforme.uk
Sensory hell and medical harm
My sister’s experience of very severe ME in the NHS
Today's guest blog is from @rozzybarrett, who writes about her sister Alice's experiences. Rosie outlines the challenges people with v. severe ME face navigating sensory sensitivities, at home and in hospital - and the creativity & flexibility needed to provide safe care.
I once could go run swim and hike Then my mitochondria went on strike Now I crash cuz of them Headaches and PEM LC, let me do what I like! #LongCovid #MECFS
A very elegant Christmas card highlighted this week - our 'On the First Day of Christmas' design. Card comes in pack of 10 with the design featuring embossed gold coloured foiling. Each card measures 150 × 150 mm. View our full range and order - shop.meresearch.org.uk
The COVID pandemic has undoubtedly been one of the largest, if not the largest, drivers of new ME/CFS cases in recorded history 🦠 A major NIH-backed study, based on the RECOVER-Adult cohort and led by the Bateman Horne Center (@BatemanHorne), found that adults who had been…
Long Covid Is Real — And It’s Changing an Entire Generation Hundreds of thousands of kids in America are struggling with an illness that many doctors and schools refuse to recognize.e Feature: rollingstone.com/culture/cultur…
Does the news reflect what we die from? More than 80% of people — including surveyed Americans, Brits, Germans, and Italians — say they follow the news because they “want to know what is going on in the world around them.” It’s not just that people expect the news to inform…
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