Author | Lightnews

Alisontomyradioooo @arisonsned.bsky.social · Sep 30

Girls aloud - Call The Shots
Gracie Abrams - That’s So True
Sabrina Carpenter - Espresso
Mylie Cyrus - Flowers
Dua Lipa - Levatating

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Adam @abrokenbattery.bsky.social · Sep 2

I’ve just donated to this worthy cause

sarah boothby @swastrosarah.bsky.social · Aug 29

I am proud to endorse this initiative, with thanks to the very many people made unwell by medical neglect of #ME who never give up, no matter how difficult it is to continue.
This fundraiser goes live 7pm BST 29 August 2025. #Justice4ME www.crowdjustice.com/case/justice... 1/2

www.crowdjustice.com

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John Peters @johnthejack.bsky.social · Aug 6

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 · Aug 6

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...

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

www.theguardian.com

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Tilman Andris @tilmanandris.bsky.social · Aug 6

#DecodeME on Channel 4 news

#MEcfs #MyalgicE #pwME #MEscience

youtu.be/DWCF1_-0yP0?...

ME linked to your genetics - early study indicates

YouTube video by Channel 4 News

youtu.be

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DecodeME @decodemestudy.bsky.social · Aug 6

(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 · Aug 6

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 · Aug 6

“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

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...

www.decodeme.org.uk

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Chris Ponting @cgatist.bsky.social · Aug 6

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

osf.io

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Michiel @murtoz.bsky.social · Jul 31

www.change.org/p/save-savan...

www.change.org/p/the-nhs-mu...

www.change.org/p/save-karen...

Sign the Petition

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

www.change.org

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Michiel @murtoz.bsky.social · Jul 31

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 · Jul 31

Ashley Dalton is @ashleydaltonmp.bsky.social

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sarah boothby @swastrosarah.bsky.social · Jul 31

@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.

Michiel @murtoz.bsky.social · Jul 31

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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Reposted by Alisontomyradioooo

sarah boothby @swastrosarah.bsky.social · Jul 31

@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.

sarah boothby @swastrosarah.bsky.social · Jul 31

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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sarah boothby @swastrosarah.bsky.social · Jul 31

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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Alisontomyradioooo @arisonsned.bsky.social · Mar 9

mygivingcircle.org/invest-in-me...

Vote for Invest in ME Research to share in £300,000 of grants

Each year MyGivingCircle gives £1,500,000

mygivingcircle.org

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blaine @jblainefoster.bsky.social · May 12

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.

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Alisontomyradioooo @arisonsned.bsky.social · Apr 6

Bailouts won't fix the sewage scandal and won't reduce bills. Join me and @GoodLawProject to call on Steve Reed to stop water company greed
goodlaw.social/uk6y

Ask Steve Reed to stop bills rising, not reward water company greed

Thames Water’s profit-hungry owners have let the water network rot while they’ve racked up alarming debts. And who do they want to pick up the tab? Customers – through ever-rising water bills. The com...

goodlaw.social

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Alisontomyradioooo @arisonsned.bsky.social · Mar 9

mygivingcircle.org/invest-in-me...

Vote for Invest in ME Research to share in £300,000 of grants

Each year MyGivingCircle gives £1,500,000

mygivingcircle.org

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Alisontomyradioooo @arisonsned.bsky.social · Jan 24

Pyjamas and #TOTP

Alisontomyradioooo @arisonsned.bsky.social · Jan 24

It’s a lot isn’t it. It’s going to be sickening when he really gets going 🙁xx

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Alisontomyradioooo @arisonsned.bsky.social · Jan 24

Hello RBJ! God it’s a lot on there isn’t it. I’m stuck between laughing at the nonsense and incredibly worried as to where it’s going!

Think I should hang here more too x

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UK Charity Invest in ME Research @investinmeresearch.bsky.social · Nov 27

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 · Dec 3

#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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Quadram Institute @quadraminstitute.bsky.social · Dec 10

🆕 Our researchers have helped develop a new multiple organ-on-chip system to help study how neurotoxins move from the gut to the brain 🧠

A collaboration with @universityofessex.bsky.social University of Hull and UKHSA 🔬
https://buff.ly/3BlKH0l

Organ-on-chip system to study the gut-brain axis - Quadram Institute

The model system simulated how a neurotoxin in the gut can trigger the brain cell death seen in Parkinson’s disease, in a proof-of-concept study from the Quadram Institute, University of Hull,…

quadram.ac.uk

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