iiinova — where your digital self keeps evolving

Cinnamon Rolling Along @cinnamonrollalong.bsky.social · 12/12/2025

@kityates.bsky.social Which of your books would you recommend as a gift for a Maths teacher?

Cinnamon Rolling Along @cinnamonrollalong.bsky.social · 10/10/2025

@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.

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Cinnamon Rolling Along @cinnamonrollalong.bsky.social · 28/03/2025

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

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Cinnamon Rolling Along @cinnamonrollalong.bsky.social · 28/03/2025

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.

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Cinnamon Rolling Along @cinnamonrollalong.bsky.social · 28/03/2025

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.

Chart of PIP descriptors that supports the point made.

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Putrino Lab @putrinolab.bsky.social · 12/02/2025

@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/

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Mystifier @plantspetspics.bsky.social · 27/01/2025

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

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Katy B @katybrc.bsky.social · 27/01/2025

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"

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Eric Topol @erictopol.bsky.social · 27/01/2025

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

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Dr Steve Taylor @drstevetaylor.bsky.social · 06/01/2025

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...

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Cinnamon Rolling Along @cinnamonrollalong.bsky.social · 09/01/2025

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

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tern @1goodtern.bsky.social · 09/01/2025

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...

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Dr Steve Taylor @drstevetaylor.bsky.social · 07/01/2025

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

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Denis - The COVID Info Guy @thecovidinfoguy.bsky.social · 07/01/2025

"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...

cidrap.umn.edu

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

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Katy B @katybrc.bsky.social · 14/12/2024

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?...

youtu.be

ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

YouTube video by Broken Battery

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ThereForME @thereforme.bsky.social · 07/01/2025

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...

thereforme.uk

“This is not about not trying hard enough”

A glimpse into daily life with very severe ME

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Katy B @katybrc.bsky.social · 07/01/2025

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

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Cinnamon Rolling Along @cinnamonrollalong.bsky.social · 07/01/2025

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

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Danielle Beckman @daniellebeckman.bsky.social · 07/01/2025

"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."

Paper at the NEJM: Cognition and Memory after Covid-19 in a Large Community Sample, published on February 28, 2024

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Pessimistic Persimmon @pessimisticpersim.bsky.social · 07/01/2025

BREAKING H5N1 UPDATE CDC says… don’t worry… they’re not like you…they were gonna die anyway. #PreeeexistingConditionsssss

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Cinnamon Rolling Along @cinnamonrollalong.bsky.social · 06/01/2025

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

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Cinnamon Rolling Along @cinnamonrollalong.bsky.social · 21/12/2024

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.

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tern @1goodtern.bsky.social · 14/12/2024

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'. 🧵

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.

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tern @1goodtern.bsky.social · 14/12/2024

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.

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Merrydholl @maryeilmicdom.bsky.social · 14/12/2024

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

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Chise @sailorrooscout.bsky.social · 09/12/2024

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! 🧪🧵⬇️

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Ruth Ann Crystal @drruth.bsky.social · 09/12/2024

✨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 🛟😷🧪

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.

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Lucibee @lucibee.bsky.social · 07/12/2024

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.

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Lucibee @lucibee.bsky.social · 09/12/2024

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...

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Adam @abrokenbattery.bsky.social · 09/12/2024

SKY News segment on #MECFS (20 mins), Includes interview with Heather Gordon, whose daughter Karen has effectively been trapped in hospital for a year with severe ME. Also features Chris Ponting and Anna Gregorowski from BACME. youtu.be/FX6Fk9-WSmo?...

youtu.be

SKY News Karen Gordon

YouTube video by Broken Battery

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Tom Kindlon @tomkindlon.bsky.social · 08/12/2024

Switzerland: SRF writes about a survey by Long COVID and ME/CFS patient organisations showing rehabilitation leading to deterioration for half of the respondents and improvement only for 17%. Google translation: www-srf-ch.translate.goog/sendungen/ka... #MEcfs #CFS #PwME #LongCovid #PASC #PwLC

www-srf-ch.translate.goog

Long Covid und ME/CFS: Falsche Behandlungen in Reha-Kliniken

Reha-Aufenthalte sind für viele Menschen mit schwerem Long Covid und ME/CFS schädlich. Das zeigt eine aktuelle Umfrage.

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ME Foggy Dog @mefoggydog.bsky.social · 08/12/2024

Read the article below. I'm not sure if it's because I've had a rough few weeks but I am reading this cynically with a big dose of scepticism. With the backdrop of the 'unprecedented pause' any edits by NICE will have to be approved by all Royal Colleges. Lots of 🤞 #pwME archive.ph/vq1FX?s=09

archive.ph

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Cinnamon Rolling Along @cinnamonrollalong.bsky.social · 08/12/2024

The starter pack owner can add you. Starter packs can be found by searching for keywords. There is a search facility for starter packs, but I have forgotten where. People search a starter pack on a topic of interest and add people from it. I think a feed can be made from it but not entirely sure.

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tern @1goodtern.bsky.social · 03/12/2024

In 2021 in England, public health decided that the way to get well was to get sicker, and that the way to get rid of disease was to catch it. It's official policy. They write it down and everything. Since then...

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Binita Kane @binitakane.bsky.social · 04/12/2024

This is a big leap from ‘it doesn’t affect kids’. Still under recognised, poorly served and underfunded. This is our future generation - no consideration of repeated infections here. www.independent.co.uk/news/health/...

independent.co.uk

Long Covid study finds teenagers suffered with symptoms for more than two years

Girls were more likely than boys to have long Covid

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Cinnamon Rolling Along @cinnamonrollalong.bsky.social · 03/12/2024

Hi Oonagh! Thanks for raising the profile of ME LC & other chronic illnesses.

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Richard Vallée @richardvallee.bsky.social · 03/12/2024

"Rehabilitation stays are harmful for many people with severe long Covid and ME/CFS. This is shown by a recent survey." Actually, it's shown by literally every survey. And loads of research. And millions of reports of harm over decades. And zero evidence of efficacy.

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Dr Noor Bari @njbbari3.bsky.social · 03/12/2024

Thought of today… “Long COVID is just like other post viral syndromes. Nothing new.” (Paraphrased from minimisers…) Erm. “Post”-viral illnesses can be severe and disabling. What made you think it was fine to give that outcome to vast swathes of the population?

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Andrew Green @andrewg76201347.bsky.social · 01/12/2024

For those who followed LongCovidPharmD on twitter, this looks like the results of the big survey she ran a while back on what meds etc have helped us with #MECFS or #longcovid!

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#MillionsMissing Aus @mmissingaus.bsky.social · 01/12/2024

⬇️Ron Davis & team study of patient-reported treatments for #mecfs & #longCovid. Over 3900 patients participated. "Of all treatments investigated, graded exercise therapy received the lowest ... score, with the vast majority of polled patients reporting harms and almost none reporting benefit."⬇️

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ThereForME @thereforme.bsky.social · 01/12/2024

Dec 1: It's Dr William Weir, who has worked with and supported patients with ME for decades. His message: “Best wishes for Christmas to everyone with ME or Long Covid. You all deserve excellent and appropriate treatment, with a full understanding of its causes. William Weir”

A pretend polaroid shows Dr William Weir posing for a photo holding a #ThereForME Christmas card. The design shows two presents, one labelled "patient safety", the other "research". The photo is labelled "1".

This second image displays Dr Weir's handwritten message. It reads “Best wishes for Christmas to everyone with ME or Long Covid. You all deserve excellent and appropriate treatment, with a full understanding of its causes. William Weir”

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Scribbler Pen @scribblerpen.bsky.social · 30/11/2024

I woke up today in a country where I work through pain and exhaustion, where people can be stigmatised and sanctioned into work when too ill, just so we can pay taxes to fund the NHS to offer assisted dying instead of disease prevention, the treatment we need or end-of-life care when it's too late.

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Cinnamon Rolling Along @cinnamonrollalong.bsky.social · 29/11/2024

Far from a trustworthy review. Suggests the PACE trial should be believed. Links to studies don’t support the points being made. Unhelpful at best.

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Karen Hargrave @karenlhargrave.bsky.social · 29/11/2024

Just spotted this Q from Green co-leader Adrian Ramsay about Long Covid research 👏👏👏 🧐 Response mentions the recent research roundtable - more details than I remember seeing before, including links to other post-viral conditions and intervention studies for new/repurposed treatments.

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