Cinnamon Rolling Along

@cathnoakes.bsky.social please would it be possible to have an update on the Bradford schools trial? Was it published? You shared a summary, it looked promising. Last time I asked, way back in 2024, I was told it was still undergoing review, wouldn’t be published as a preprint and to keep waiting.

Mind you, that would just give an excuse to make successfully claiming even more difficult.

I assume the descriptors were set many years ago.
They really aren’t great even before anyone starts setting arbitrary cut offs.
The whole assessment process needs a big shakeup.

Chart of PIP descriptors that supports the point made.

Chart of PIP descriptors that supports the point made.

The 4 point PIP cut off is so arbitrary.
Needing help with washing your upper body scores 4 points. Needing help with washing your lower body or hair (which for many conditions & disabilities is harder) only scores 2 points.
Needing prompts to eat scores 4, but needing supervision scores 2.

@RobWust appreciation post:

tldr: post-exertional malaise (PEM) is NOT a choice.

In 2024, an amazing paper was published showing us some key features unlocking the physiology PEM in #LongCOVID. Curious minds would read a paper like this and view 1/

I need something to keep my hands busy & calm my mind but I have NO energy and a melted brain. Embroidery? Too complicated, weak hands. Puzzles? Paint-by-numbers? Can’t do either in bed. Crochet? Can’t count. Knitting? No arm strength. Oh and no fundage $
#myalgicecephalomyelitis

I struggle with the same.

Vitally important report from @crunchme.bsky.social on
Addressing Infection Associated Chronic Conditions
"It brings together much of the key information needed to help bring policymakers up to speed on these conditions - including #LongCovid, #ME/CFS, #POTS"

Still more deadly than flu or RSV
jamanetwork.com/journals/jam...

So this is the new great idea🤔

I’m pretty sure if Sarah had seen a GP she wouldn’t have needed to have a CT scan, no need to speak to the ENT registrar & yes it could be managed in the community

Why does NHS England always underestimate the skills of GPs?

www.england.nhs.uk/long-read/re...

Well done. I had 3 letters correct in row 2 but still failed today.

graph go up

We're only now heading into what is normally the worst of Norovirus season here... and our rolling annual total of cases of Noro is already unprecedented.

Why?
Because...

Winter crisis - GPs are not to blame

By providing 20% more appts with 20% less funding than 2016
1/7 of population waiting for hospital treatments or investigations they are overwhelmed
GPs have 2300 patients up 500
Funding not matching demand & some GPs unemployed
@rthonwesstreeting.bsky.social

Early-life infection burden continues throughout childhood, new data reveal

"New data from researchers in Denmark suggest that children who have a lot of common infections early in life have higher risk of moderate to severe infections and antibiotic use throughout childhood."

Study: jamanetwork.com/journals/jam...

YouTube video by Broken Battery ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

Please keep watching & sharing this 27min important film on
"The Greatest Medical Scandal" by @abrokenbattery.bsky.social
We need everyone to be watching this
#ME #MEcfs #pwME #LongCovid #MedSky
youtu.be/RiwX9Y0NbiQ?...

“This is not about not trying hard enough” A glimpse into daily life with very severe ME

We’ve got a hard hitting #ThereForME substack out today from Karen Galpin, writing about caring for her daughter Sophia, who has very severe ME.

Karen describes their daily reality, responding to narratives that downplay the impact of #ME

www.thereforme.uk/p/this-is-no...

I'm uncomfortable sharing #ME related personal info but the level of disability #pwME experience always needs exposing.
Sometimes I type when I can't bring food to my mouth or put on another layer of clothing.
Typing uses fingers & eyes, eating & dressing require limbs & more energy.

#MEcfs

That wouldn’t be surprising would it? In this case, no it wasn’t him.

"Widespread use of metal caused estimated 2- to 3-point drop in IQ for nearly 180 years of Pax Romana"

Meanwhile, #Covid in 5 years:
"Participants with persistent symptoms had a 6-point loss in IQ, while those who had been admitted to an ICU experienced a 9-point loss in IQ."

BREAKING H5N1 UPDATE

CDC says… don’t worry… they’re not like you…they were gonna die anyway.

#PreeeexistingConditionsssss

I have just been judged by someone with LC/ME much milder than mine for not ‘seizing the day’ and making the most of opportunities like they do. It was someone who should know better. Gobsmacked.
#pwME #pwLC

Lizzy you have a lot on your plate. Please don’t let this be pressure to do more. I wouldn’t have suggested your name if I realised it has to be an account mainly about the poetry etc.

Graph of norovirus cases from 2012 to present day. The peaks come in Spring, the troughs come in Autumn. The side before Covid peaks at about 200-300. The side after Covid peaks 400-450. And this year hasn't necessarily peaked yet.

Hmmm.
There's something more than a little concerning about what's happening with Norovirus here.

A quick thread about Norovirus and its place within in the 'quad-demic'.
🧵

While waiting in a ward to see someone in hospital this week, I carefully watched a doctor who went from patient to patient handling them and handling objects and not washing or sanitising their hands between patients...
*and coughing*
Not into their elbow... just into the air.

You know you've got an energy-limiting illness when you look at the calendar pondering when might be the safest day to attempt a shower before Christmas. #ME #MECFS #pwME #POTS #Disability #NEISvoid

THIS IS HUGE! Researchers at TAU and the University of Lisbon have developed a groundbreaking nano-vaccine against COVID-19, delivered via nasal spray WITHOUT requiring cold storage. Preclincial studies show the vaccine was effective against ALL major SARS-CoV-2 variants. Let’s talk about that! 🧪🧵⬇️

From: @erturklab.bsky.social. A diagram of the skull's bone marrow and meninges layer with purple spike protein and purple and blue SARS-CoV-2 coronavirus. There are yellow channels between the two and the purple spike protein and SARS-2 virus are going through them. In the brain tissue, we see white blood cells that have a red haze around them signifying inflammation.

✨Please share! COVID, H5N1 & more newsletter.

In this issue:
💀Spike protein in skull bone marrow yrs after infection
😴T cells exhausted in MECFS & probably LongCOVID
✨LILRB1 & LILRB2 in PBMCs, LongCOVID biomarker?
⛪Notre Dame Paris reopens

& much more! buff.ly/4f2OMnW

#medsky #IDsky #Pedsky 🛟😷🧪

A "stocktake"? wtf does that mean? Also very telling that he uses the outdated term "CFS/ME".

And just who is in this "working group"?

They shouldn't need to determine *if* [whether] extra support is required. Archer has told them it *is* required and that something needs to be done about it.

Well thanks to this interview (see end of longer video), it's now clear who is doing this "stocktake" audit of ME services for NHS England.

(hint: rhymes with "f&ck me")

bsky.app/profile/abro...