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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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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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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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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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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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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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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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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AdyBee 🐝 @adybee.bsky.social · 24/11/2024

HART and GREAT BARRINGTON DECLARATION etc were/are using the tried and tested playbook CREATING DOUBT. Unfortunately it works (and lots of people die but they don’t care about that). #Confuse #CreateDoubt #BuryTheEvidence bsky.app/profile/adyb...

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

Please take the time to read the excellent thread quoted here if you have any interest in understanding why UK hospital staff and patients were and still are unprotected against Covid. TLDR: IPC cell refuse to give up droplet ideology and challenges to IPC cell were ignored. #CovidIsAirborne #FFP3

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Carole Bruce @cabruce.bsky.social · 21/11/2024

Totally professional and rigorously researched this 27 minute film combines the facts with the relevant film clips to back up the evidence that #ME patients have been disbelieved and mistreated for the last 30 years. This video shows one of the main reasons why this is so. youtu.be/RiwX9Y0NbiQ?...

youtu.be

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

YouTube video by Broken Battery

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Cinnamon Rolling Along @cinnamonrollalong.bsky.social · 27/11/2024

I suddenly have a very large increase in number of followers (Hi to everyone!) and can’t keep up with following back. If you are interested in and post about the topics in my bio, please let me know and I will follow back.

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CautiousInCanada @covidcanada.bsky.social · 27/11/2024

The Canadian Paediatrician Society just released this. They psychologize many of the conditions that long covid kids have including POTS, seizures, abdominal pain, etc. This document is abusive & WILL harm kids. We need better care here in Canada for our kids. Not this. cps.ca/en/documents...

cps.ca

Somatic symptom and related disorders: Guidance on assessment and management for paediatric health care providers | Canadian Paediatric Society

Somatic symptom and related disorders (SSRDs) pose significant challenges in paediatric health care due to their impacts on child and adolescent well-being, functioning, and family systems. This state...

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EveryDoctor @everydoctor.org.uk · 25/11/2024

IMPORTANT: We completed an important project a while ago, looking into the links between MPs+the private health sector🚨 Our research has been quoted in lots of places, like this article ⬇️. 💙We have decided to bring our research up to date💙 www.thenational.scot/news/2425055...

thenational.scot

Labour's Wes Streeting takes £175k from donors linked to private health firms

LABOUR shadow health secretary Wes Streeting has continued to accept tens of thousands of pounds from donors with links to private healthcare while…

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Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic.bsky.social · 26/11/2024

I dont like table 1 because half of it provides a list of symptoms with "functional" written before them. 1. Remove the word "functional" and many LC/ME patients have these symptoms 2. It becomes a circular definition - "Functional" symptoms ←→ FND

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ThereForME @thereforme.bsky.social · 26/11/2024

Make sure you’re following #ThereForME on our new social media accounts! You can find links here: linktr.ee/ThereForME #ComingSoon

On a bright orange background sits a dark blue Christmas tree, decorated with sparkling fairy lights, baubles and a star on the top. It sits on the ground, which also looks like a “programme loading” bar. Underneath are the words “Coming soon…”

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tern @1goodtern.bsky.social · 25/11/2024

“What I said to them was, I’m not going to be polite and nice to Elon Musk I’m afraid, so I can’t keep to the code of conduct,” she said. Love it. www.theguardian.com/technology/2...

theguardian.com

Oxford scientist resigns from Royal Society over Elon Musk’s continuing fellowship

Prof Dorothy Bishop said fellowship was ‘a contradiction of all the values’ of UK’s national academy of sciences

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Steve Griffin @profstevegriffin.bsky.social · 16/11/2024

Think back to when the "living with" policy/farce was launched. 1. Mass testing, including free LFDs. 2. Recent vax for many 3. Only the very beginning of omicron diversity 4. Multiple effective monoclonal antibodies 5. Boosters available 6. Recognition (grudgingly) of airborne transmission

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Sue J @smpwrgr.bsky.social · 24/11/2024

The people you see masking are the ones who: * care * are paying attention * know there’s a better way We understand what’s happening and we reject it Masking is an act of compassionate defiance

We choose to mask

Rather than be complicity in the mass disablement of humanity

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Trish Greenhalgh @trishgreenhalgh.bsky.social · 24/11/2024

Reproducing my thread from the Other Place on our Lancet paper 'Long COVID - a clinical update'. Coauthors Manoj Sivan, Alice Perlowski, Janko Nikolich. 1/ www.thelancet.com/journals/lan...?

thelancet.com

Long COVID: a clinical update

Post-COVID-19 condition (also known as long COVID) is generally defined as symptoms persisting for 3 months or more after acute COVID-19. Long COVID can affect multiple organ systems and lead to sever...

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