iiinova — where your digital self keeps evolving

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sarah boothby @swastrosarah.bsky.social · 13/07/2026

"First, the good news. The Secretary of State (SoS) has agreed to consider convening a clinical committee to explore a specialised service for very severe ME sooner than April 2027." My question is, who can they invite with current clinical expertise in both #ME and a failing NHS?

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cbme-mark.bsky.social @cbme-mark.bsky.social · 16/07/2026

Three ME support groups have written an open letter to the Royal College of Psychiatrists challenging its defence of last month’s Congress session on ME and Long Covid. A vague “biopsychosocial” framework cannot rescue treatments the evidence has already rejected.

cambridgeme.org.uk

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Kevin Schofield @kevinschofied.bsky.social · 12/01/2026

Amazingly, Zahawi only got round to deleting the below after the press conference announcing his defection to Reform.

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Jon Cooper @joncooper-us.bsky.social · 11/01/2026

100% this!👇

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Adam @abrokenbattery.bsky.social · 02/09/2025

I’ve just donated to this worthy cause

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John Peters @johnthejack.bsky.social · 06/08/2025

Chris Ponting is an absolute hero. He's involved with this work because of his friendship with Simon McGrath who was at Oxford Uni with him. Chris has spent hours travelling to visit Simon. Amazing guy. #c4news #DecodeME #MEcfs

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Brian Hughes @bmhughes.bsky.social · 06/08/2025

Proud to be on the Science Advisory Board for DecodeME, a peripheral role but a fantastic vantage point from which to witness such outstanding work by Chris Ponting @cgatist.bsky.social and colleagues #MECFS #pwME www.theguardian.com/society/2025...

theguardian.com

Scientists find link between genes and ME/chronic fatigue syndrome

Large study suggests people’s genetics could ‘tip the balance’ on whether they would develop the illness

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DecodeME @decodemestudy.bsky.social · 06/08/2025

(1/2) Key genetic differences found in people with ME/CFS > Swipe to find out more. These findings reflect the lived experience of thousands of #pwME. Thanks to all our participants & supporters who made this possible! Read a summary of our results: shorturl.at/pgsjk

Graphic 1 of 4. DecodeME: The Results graphic. At the top in bold lettering, it says ‘Main Findings’. Beneath this it says ‘Your genes contribute to your chances of developing ME/CFS. Other key findings are on the following slides.

Graphic 2 of 4. DecodeME: The Results graphic. The slide says ‘People with an ME/CFS diagnosis have significant genetic differences in their DNA compared to the general population’. Beneath this is an image of a DNA helix and a magnifying glass.

Graphic 3 of 4. DecodeME: The Results graphic. The slide says ‘These lie in many places across the genome, and do not impact just one gene’. Beneath this is an image of a DNA helix and graphs.

Graphic 4 of 4. DecodeME: The Results graphic. The slide says ‘Eight genetic signals have been identified. As DNA doesn’t change with ME/CFS onset, these findings reflect causes rather than effects of ME/CFS’. Beneath this is a blue magnifying glass with a DNA helix.

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Adam @abrokenbattery.bsky.social · 06/08/2025

Clip: Channel 4 News, Prof Chris Ponting tells a participant that the DecodeME study found eight genetic differences in people with MECFS — demonstrating that it’s a biological, organic illness.

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Steve Fifield @stevefifield.bsky.social · 06/08/2025

“DecodeME also looked at genetic signals associated with depression and anxiety that were near the genetic signals found for ME/CFS, and found that neither involved the same causal variants as ME/CFS” www.decodeme.org.uk/x-marks-the-... where ME/CFS biology can be discovered - DecodeME

decodeme.org.uk

X marks the spot where ME/CFS biology can be discovered - DecodeME

06 August 2025 Scientists, people with ME/CFS, and their charities came together to create DecodeME, the world’s biggest ME/CFS study – and its results are striking. 18,000 people with ME/CFS gave the...

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Chris Ponting @cgatist.bsky.social · 06/08/2025

For the statistical geneticists among you, the GWAS summary statistics are now freely available to be downloaded. Look under DecodeME Summary Statistics here: osf.io/rgqs3/files/...

osf.io

OSF

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Michiel @murtoz.bsky.social · 31/07/2025

www.change.org/p/save-savan... www.change.org/p/the-nhs-mu... www.change.org/p/save-karen...

change.org

Sign the Petition

Save Savannah Victora-May - Prevent Another ME/CFS Tragedy

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Michiel @murtoz.bsky.social · 31/07/2025

Within a week of the plan being published, There were three petitions for people with severe ME being held against their will by the NHS. And now this mother of a child with ME being *arrested* for her death despite the harms caused by THE NHS!!!

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Michiel @murtoz.bsky.social · 31/07/2025

Ashley Dalton is @ashleydaltonmp.bsky.social

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sarah boothby @swastrosarah.bsky.social · 31/07/2025

@rthonwesstreeting.bsky.social I can't find Ashley Dalton on here so tagging you in with total support for what you have had to do. Hope BMA negotiations are going better.

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sarah boothby @swastrosarah.bsky.social · 31/07/2025

@meactionuk.bsky.social @meactnet.bsky.social please boost on other platforms. We are scrambling for lawyers to get the sister out as the top priority. I am speaking with national print media this morning.

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sarah boothby @swastrosarah.bsky.social · 31/07/2025

Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear. #MEKills #HumanRights

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blaine @jblainefoster.bsky.social · 12/05/2025

It’s #MEAwareness Day! MECFS has one of the lowest QOL of any disease and yet most providers incorrectly believe it’s psychological and refuse to use current best tx practices. For my healthcare friends, the Bateman Horne Center just released a very comprehensive clinical care guide.

batemanhornecenter.org

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UK Charity Invest in ME Research @investinmeresearch.bsky.social · 27/11/2024

Christmas cards still available from the charity 10 cards per pack - £2 per pack (includes postage, for UK delivery - email us for outside of UK) www.investinme.org/ccard2024.sh... #mecfs #research #philanthropy #Christmascards #CofEforME

Montage of UK charity Invest in ME Research Christmas cards on offer

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UK Charity Invest in ME Research @investinmeresearch.bsky.social · 03/12/2024

#InvestinMEResearch - How We Effectively Energise ME Research Finding, Funding and Facilitating Research into ME investinme.org/invest-in-me... #mecfs #GivingTuesday #research #philanthropy #CofEforME

A postcard highlighting UK charity Invest in ME Research's decade long work to fund abd facilitate a UK/European Centre of Excellence for ME in Norwich Research Park, UK

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lucyainsley.bsky.social @lucyainsley.bsky.social · 13/12/2024

mygivingcircle.org/invest-in-me... Free, quick and easy, vote for @investinmeresearch.bsky.social to win free research money! #pwME #MyalgicE #LongCovid #MyalgicEncephalomyelitis #ME

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Mike's Euro Maras for M.E. @mikeseumarathons.bsky.social · 14/12/2024

Every journey has to start somewhere. Back running after a month off. Got round 3 miles and it nearly killed me. Up and running for Belfast Marathon (european country 33) Aiming to get to £55k by end of 2025 for @investinmeresearch.bsky.social www.justgiving.com/mikeseumarathons

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Alisontomyradioooo @arisonsned.bsky.social · 21/11/2024

@abrokenbattery.bsky.social video on #myalgicencephalomyelitis is brilliant. Includes everything you would want people to know about the history of ME. www.youtube.com/watch?v=RiwX...

youtube.com

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

YouTube video by Broken Battery

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Long Covid UK @longcoviduk.bsky.social · 11/12/2024

📣 Don’t forget this evening, Weds. 11th Dec. at 7pm GMT: 🔥 Fireside Chat Series - Lessons from the US #2: Mast Cell Activation Syndrome with @binitakane.bsky.social, Long Covid Support’s @helenoakleigh.bsky.social & guest Dr Tania Dempsey. #LongCovid #MCAS ➡️ Link: www.youtube.com/watch?v=i4M3...

youtube.com

Lessons from the US: Mast Cell Activation Syndrome #MCAS

YouTube video by The Long Covid Clinic: What You CAN Do

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Ben Collins @bencollins.bsky.social · 11/12/2024

A statement from The Onion about InfoWars.

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Royal Free 1955 @rfh1955.bsky.social · 11/12/2024

One year ago today. #longcovid rfh1955.blogspot.com/2023/12/phot... rfh1955.blogspot.com/2023/12/phot...

rfh1955.blogspot.com

Photos From Outside The UK Covid Inquiry, 11th December 2023 - Part One

...and Prime Minister Rishi Sunak

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lukelukeluke @lukelukeluke.bsky.social · 10/12/2024

Here are some nice mushrooms

An overturned stick is held upright in a winter forest and covered in mature rosy Splitgill mushrooms. Their gills burst out like a fireworks display

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Todd Davenport @sunsopeningband.bsky.social · 11/12/2024

It’s seductive to think that people with ME who are in remission might be “cured,” but I would have significant concerns about force readiness involving a population who may relapse into severe forms of disability with they types of exertion military service requires. inews.co.uk/news/politic...

inews.co.uk

Army to recruit soldiers with ADHD, autism and ME amid staffing crisis

The Ministry of Defence is to take on a wider range of candidates as number of troops plummet to lowest level in 200 years

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Trish Greenhalgh @trishgreenhalgh.bsky.social · 10/12/2024

Another reminder: Respiratory infections spread mainly through the air. That’s why they affect the lungs. Masks, worn correctly and consistently, reduce the spread of respiratory infections. Respirators work better than masks. Washing hands isn’t wrong, but it won’t stop airborne transmission.

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Valerie Eliot Smith @valerieeliotsmith.bsky.social · 09/12/2024

Thread: 1/4 The AGM of the MEAssociation is being held today. With the current interest in, and focus on, governance at the Charity, I requested remote access to the meeting, as an observer (I am not a member). My request was denied on the basis of a "members only" attendance policy.

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James O’Brien @mrjamesob.bsky.social · 29/11/2024

On the one hand an MP found to have told the truth about a minor conviction, on the other an MP found to have lied about being locked up for kicking seven bells out of a young woman...

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Isopod Fan Account @bedupolker.bsky.social · 21/11/2024

Contrary to popular belief, there are only four kinds of bats.

Illustrated image divided into four panels, each showing a head of a bat with a text label. Top left: little guy, a regular looking back with a dark face and light colored fur, top right: little guy deluxe, a bat with a mask and large ears alongside a bat with a leaf shaped nose, bottom left: what is even going on here, a visored bat with a large forehead next to a bat with a large, wrinkly nose, bottom right: o hi doggie, a fruit bat with its tongue sticking out.

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God @thegodshow.com · 22/11/2024

There IS a left-wing agenda, and it’s to prioritize compassion over greed. Kindness isn't a limited resource.

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Alisontomyradioooo @arisonsned.bsky.social · 21/11/2024

@abrokenbattery.bsky.social #greatestmedicalscandal “George Monbiot describes the treatment of #MECFS as "The Greatest Medical Scandal of the 21st century" New 27 min explainer video about the scandal. #myalgicE #disability www.facebook.com/brokenbatter...

facebook.com

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James O’Brien @mrjamesob.bsky.social · 20/11/2024

Jeremy Clarkson, who owes his fame & fortune in large part to the BBC, sneers at the brilliant @vicderbyshire.bsky.social for being ‘classic BBC’ when she uses *his own words* to describe his position.

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Rega Research Ltd @rega.co.uk · 19/11/2024

**COMPETITION TIME** Repost, Like & Follow us to be in with a chance to #WIN a REGA Planar 3 RS Edition turntables worth £999.00. Find out more here: shorturl.at/Z6rsp One lucky winner will be selected at random from all entrants on the 18th December 2024. Enter on X and IG also. Good luck!🤞

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Mike Galsworthy @mikegalsworthy.bsky.social · 20/11/2024

I ripped this video from Eleonora Svanberg on X (she’s not on 🦋) She wrote: “I'm a PhD student at @UniofOxford and I think I'm living in a fairytale :-) Foxes playing around in the snow at Magdalen College this morning — absolutely magical!”

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