iiinova — where your digital self keeps evolving

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sarah boothby @swastrosarah.bsky.social · 3h

I support this campaign because nobody knows when hospital treatment may be needed, and nobody should be afraid to seek medical attention simply because NICE guidance is unclear and clinics do not understand how to manage risk. @england.nhs.uk refused to adopt the rduh clinical guidance x3 2022-2024

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Anna Wood @annakwood.bsky.social · 5h

🐦 THE CALL OF THE DUNNOCK🦋 A fox burying a chicken leg, a magpie’s iridescent feathers, kestrels displaying. The story of how one small brown bird led me to discover the wildlife in an urban Glasgow garden, while coming to terms with chronic illness. #DVpit #NF nature/memoir

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Carole Bruce @cabruce.bsky.social · 8h

Can’t pensioners, like me, understand that it’s very likely that they will need decent social care in the future? Families, however kind, often can’t offer the care needed in later life or during illness or have to give up their jobs, the new national care service is financially and morally sound.

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sarah boothby @swastrosarah.bsky.social · 7h

justice4me.uk Please support lawyers to challenge this injustice, on behalf of everyone with #ME and #LongCovidME, regardless of disease severity.

justice4me.uk

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Alem Matthees @alemmatthees.bsky.social · 22h

(3/3) The global reputation of the US is plummeting fast. Most are sick and tired of being exposed to Trumpist shenanigans every single day, except those who wish to emulate them, including rightwing populist grifters in Australia who are salivating at the chance to replicate that 'success' here.

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Alem Matthees @alemmatthees.bsky.social · 22h

(1/3) As an outsider, it appears the US is approaching a crossroad on the edge of a precipice. What happens in November 2026 is going to determine the trajectory for a long time. The heart of the nation and the robustness of democracy is at stake with Project 2025 & Dark Enlightenment sympathisers.

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Long Covid The Answers @longcovidanswers.bsky.social · 29/09/2026

Could blood vessel damage help explain the many symptoms of #LongCOVID? Prof Resia Pretorius and Prof Doug Kell discuss their research into abnormal clots, inflammation and vascular damage, and how these changes may affect the microcirculation and oxygen delivery. #ISLCPAIS #LongCOVIDResearch

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#MEAction Network @meactnet.bsky.social · 29/09/2026

MEpedia is going strong-- we just received notice that MEpedia reached 20,000 clicks from Google search in the past 28 days alone! Your support helps important knowledge get in the right hands. Check us out at www.me-pedia.org! #pwME #MEpedia #MECFS

Gold badge showing 20K clicks from Google Search for me-pedia.org in the last 28 days.

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Tax Justice UK @taxjusticeuk.bsky.social · 29/09/2026

We all know tax goes up the more you earn... right? 🤔 Not quite. For most people, yes. But at the very top, something strange happens.. Average tax rates paid: 💷 Top 10% → 39% 💷 Top 1% → 37% 💷 Top 0.1% → 34% 💷 Top 0.01% → 30% And 1 in 4 of the ultra-rich pay 20% or less.

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John O'Connell @jdpoc.bsky.social · 29/09/2026

Once we've collated all the info, we'll drop some excellent examples of accounts we'd ID'd, in a few days.

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sarah boothby @swastrosarah.bsky.social · 29/09/2026

influence of sex hormones are indicated by the statistics alone. Ron knows. What has been worrying me forever is the lack of longitudinal studies. In England UK, these should have been integral to evaluating the clinical efficacy of GET and CBT when the NHS opened CFS clinics all over the country.

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Chris Ponting @cgatist.bsky.social · 29/09/2026

Rob Wust (Amsterdam) shows that #pwME and #pwLC (all with PEM) *perfectly* separate from healthy controls with respect to their muscle microvasculature radius. Lower lumen radius in ME/LC. Needs replication, but this muscle biopsy metric has high diagnostic potential. #MEcfs #PRIME26 #LongCovid

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Tax Justice UK @taxjusticeuk.bsky.social · 29/09/2026

Trump and big tech CEOs want the UK to scrap our digital services tax. Last week we sent a letter to Andy Burnham urging him to stand strong in the face of lobbying from the USA, to strengthen the DST, and apply it to AI companies. Read more - taxjustice.uk/blog/digital...

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Long Covid Kids @longcovidkids.bsky.social · 29/09/2026

🧡 A little bit of LCK orange is heading to #WOY2026. We’re delighted that our Founder and CEO, Sammie McFarland, has been invited to this year’s Women of the Year Lunch and Awards. Since founding LCK in 2020, Sammie has advocated alongside children, young people, families & colleagues

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ME/CFS Science @mecfsscience.org · 29/09/2026

1) An initiative worth sharing: The Severe & Very Severe ME Research Registry. It's a website that provides access to research for severely and severely affected ME/CFS patients from Germany, Austria and Switzerland (DACH region).

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 28/09/2026

we all know this season of America has jumped the shark but this is too much

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Mark Kersten @markkersten.bsky.social · 28/09/2026

"I want to say to the millions of people in this country and indeed elsewhere, who have been moved and outraged by the plight of the Palestinian people. We hear you. You were right." Would love someone in government in Canada to say the same. theguardian.com/politics/202...

theguardian.com

‘You were right’: Ed Miliband tells critics Labour was wrong on Gaza

Foreign secretary will tell party’s conference ‘we are not here to accept the status quo but to change it’

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Lauren Dobson-Hughes @ldobsonhughes.bsky.social · 28/09/2026

“One day, when it’s safe, when there is no personal downside to calling a thing what it is, when it’s too late to hold anyone accountable, everyone will always have been against this”

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Dr Eleanor Roberts @elbelbumble.bsky.social · 27/09/2026

Thanks again @georgemonbiot.bsky.social for your advocacy. A point about the PACE trial researchers wanting their therapy to be right struck home. I was treated at the Maudsley, workplace of Simon Wesley, and Trudie Chalder (who I was also working with in another capacity!) youtu.be/H2rRf_f2hJs?...

youtu.be

LBC | Natasha Devon interview with George Monbiot

YouTube video by Broken Battery

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Adam @abrokenbattery.bsky.social · 27/09/2026

“It has sent many people from having mild or moderate cases to severe #MECFS… it has turned people housebound, bedbound. It has completely destroyed their lives.” @georgemonbiot.bsky.social on the harm caused by graded exercise therapy (GET) for #MECFS.

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Crafty Cow Cat Sofas @craftycow.bsky.social · 27/09/2026

Don’t need a footstool? Well how about a judging perch for your cat? #cats #catsofbluesky >>>>>>>>>>>>>> craftysharp.etsy.com

A collage of 6 images of a black cat sitting or standing on various footstools looking judgemental.

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Charlie Stross @cstross.bsky.social · 27/09/2026

What was that quote …? “It is difficult to get a man to understand something, when his salary depends on his not understanding it.” — Upton Sinclair.

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Alem Matthees @alemmatthees.bsky.social · 27/09/2026

"Have you tried yoga?" Yes I have, and it looked something like this amusing image I found on Reddit. www.reddit.com/r/cfs/commen... Jokes aside, there are many forms of yoga, and one thing I noticed about #MECFS is how it renders useless the benefits of yoga and even makes them harmful.

Images depicting a person attempting yoga then moving into the sleeping position under a blanket and taking a nap.

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Paula Knight 🎨✒️♿ @paulaknight.bsky.social · 26/09/2026

@georgemonbiot.bsky.social was on top form tallking about ME on @natashadevon.bsky.social Packed a lot of important info in: Pace Trial, GET harms, benefit cuts, insurance etc. It was like a potted history and didn't mince words about how awful it is. Listen back! #MEcfs #MyalgicEncephalomyelitis

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Apoorva Mandavilli @apoorvanyt.bsky.social · 26/09/2026

I’ve been reporting on the CDC for years, and have written about many of its troubles over the past year. I was still shocked by the extent of the staff losses and political interference I found when reporting this one. www.nytimes.com/2026/09/26/h...

nytimes.com

‘Zombified’ C.D.C., Hobbled by Cuts, Struggles to Fulfill Scientific Mission (Gift Article)

The agency has lost its independence and nearly a third of its staff, as Health Secretary Robert F. Kennedy Jr. and associates have tightened control.

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Anna Wood @annakwood.bsky.social · 25/09/2026

#DVparty #NF RAISING HARE X BODY WEATHER Excited to present my mood board for THE CALL OF THE DUNNOCK, a nature memoir about discovering the wildlife in my suburban garden while grappling with being housebound due to a chronic illness. #mecfs

A montage of 9 photos, 8 showing birds, the centre one is myself a white woman sitting in a wheelchair holding a camera to my face

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Long Covid Advocacy @longcovidadvoc.com · 26/09/2026

Anna is also taking part in the diverse voices pitch event with her amazing non-fiction book of wildlife observation from her Glasgow garden! Do show her some ♥️ & support #pwME #MEcfs

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Richard Vallée @richardvallee.bsky.social · 26/09/2026

There is really an immense failure at the top of the health care industry. No strategic thinking. Essentially wasting billions in funds to sacrifice tens of millions of lives and the net result is trillions in resulting losses and moral degeneracy. It was always cheaper to work at solving it.

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sarah boothby @swastrosarah.bsky.social · 26/09/2026

Ron Davis' edit on the front edge of #ME research in 2026. Presentations were given live at the end of his symposium at Stanford. No new findings were shared so as not to jeopardise publication in 'reputable' journals that demand they must be first, delaying by years www.youtube.com/playlist?lis...

youtube.com

2026 Community Symposium on the Molecular Basis of ME/CFS - YouTube

Community Symposium on the Molecular Basis of ME/CFS September 11, 2026, hosted by Stanford University and Ron Davis Opening Remarks: Ronald W. Davis, PhD, S...

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Long Covid Advocacy @longcovidadvoc.com · 26/09/2026

💬 Reminder that George Monbiot will be talking to Natasha Devon on LBC today about #ME. 📻 6-9pm Saturday 🔥 Both have been exceptional allies to #pwME so it should be a good one! Note: if listening on phone, you need the LBC app which needs setting up before. www.lbc.co.uk/radio/

lbc.co.uk

LBC Radio - Listen & Watch Live | LBC

Talk radio for the UK, letting you have your say on the big issues of the day, with breaking news and opinion.

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Alem Matthees @alemmatthees.bsky.social · 25/09/2026

The most insane thing about this #MECFS scandal, beyond all the suffering and neglect, is that it costs hundreds of times more in economic losses every year than it would to fund the research that could eventually decrease this burden. The degree of short-sightedness involved is astounding.

theguardian.com

Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot

Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot

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George Monbiot @georgemonbiot.bsky.social · 25/09/2026

Anyone who believes this bunch of con artists represents their interests is either a billionaire or seriously misinformed. leftfootforward.org/2026/09/outr...

leftfootforward.org

Outrage as Reform-run council votes to shut 10 nurseries

Members of the public shouted “you should be ashamed” as Reform councillors approved the plans

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Sarah Sweet @sarahsweet.bsky.social · 25/09/2026

I have had ME/CFS for 20 years. I would like treatment or, even better, a cure. At the very least, I would like people to treat ME/CFS as something that demands and deserves sustained medical research.

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Sarah Sweet @sarahsweet.bsky.social · 25/09/2026

When people like @georgemonbiot.bsky.social and @davetuller1.bsky.social are outraged—not just by all the needless suffering but also by all the crap so-called science that fuels it—I feel a little bit of hope. Articles like this absolutely matter.

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sarah boothby @swastrosarah.bsky.social · 24/09/2026

Post exertional malaise is delayed by days when the illness starts. If it is not well managed (there is no cure or treatment) it gets worse; shorter interval on the delay, and higher intensity and range of symptoms. 200 recorded symptoms. No test. Your doctor will not know what to do. #pwME will.

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C.H. Romatowski @chromatowski.bsky.social · 24/09/2026

I am so desperate for someone to publish their data on how many of “healthy control” volunteers screened positive for Long Covid. I’ve been hearing of this problem for years, I think it would be so valuable to document it.

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 24/09/2026

This talk is about the association between endometriosis and mental illness. Note: 'phenotype' is whether the patient has been *diagnosed*. The diagnostic odyssey to which most people with endo are subjected means patients get dxed w/depression or anxiety regardless of symptomatic presentation.

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Natasha Devon @natashadevon.bsky.social · 24/09/2026

George will be coming on my show this weekend to discuss this very important article.

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Tessa Munt MP 🔶 @tessamunt.bsky.social · 24/09/2026

Thank you so much, George! Your conclusion speaks volumes, reflecting so much that I hear from #pwME.

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Lucibee @lucibee.bsky.social · 24/09/2026

If folks need an impression of how dismal things are wrt treatment of ME and LC in the NHS, you just need to look at the services stocktake that was done in January 2025. There was "no data" for ME/CFS clinic referrals.

Annex 1 - Data Dashboard - Long Covid ME/CFS Stock take December 2024.

Highlighted box shows that there is NO DATA for total referrals to ME/CFS clinics for the period examined in the stocktake.

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Tina Rodwell @tinarodwell1.bsky.social · 24/09/2026

There are many ways to tackle serious issues and to make a difference. you can chose your heroes. @alemmatthees and @georgemonbiot.bsky.social www.theguardian.com/commentisfre... are just two of so many. They are dismissed and our trust erodes more because of that.

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George Monbiot @georgemonbiot.bsky.social · 24/09/2026

Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...

theguardian.com

Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot

Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot

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Alem Matthees @alemmatthees.bsky.social · 24/09/2026

(1/3) I would not repeat years of very severe #MECFS again for billions of dollars. Not just because of the ongoing difficulties, but also the risk of not surviving. Just one single day would wipe the smug and doubt off the faces of those who disbelieve. Just one single day, but there is a catch.

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Binita Kane @binitakane.bsky.social · 23/09/2026

Every now and again it’s great for clinicians and researchers to meet and ‘chew the cud’. Fantastic to see Prof Chris Ponting and meet some of his incredible team in Edinburgh today.

Picture of Dr Binita Kane and Prof Chris Ponting smiling into the camera, with Arthur’s Seat (Edinburgh) in the background

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 23/09/2026

Tal is mentioning looking right at the nailbed, where the capillaries are closest to the surface. She says there is an "underappreciated underutilized world of information" here, plus in your eye, and under your tongue. It's a great way to explore what's there.

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 23/09/2026

Talking about allodynia in murine models. Allodynia is when pain is produced by a non-painful stimulus. If you give LPS, hypersensitivity to pain occurs (Note: LPS is lipopolysaccharide, which is often used as an infectious proxy) Male mice showed increased allodynia-- but not female mice

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