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Girls aloud - Call The Shots
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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

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

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...

YouTube video by Channel 4 News ME linked to your genetics - early study indicates

#DecodeME on Channel 4 news

#MEcfs #MyalgicE #pwME #MEscience

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

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.

(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

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.

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...

“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

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/...

Sign the Petition Save Savannah Victora-May - Prevent Another ME/CFS Tragedy

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

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

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

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!!!

Ashley Dalton is @ashleydaltonmp.bsky.social

@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.

@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.

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

Vote for Invest in ME Research to share in £300,000 of grants Each year MyGivingCircle gives £1,500,000

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

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.

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...

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

Vote for Invest in ME Research to share in £300,000 of grants Each year MyGivingCircle gives £1,500,000

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

Pyjamas and #TOTP

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

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

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

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

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

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

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,…

🆕 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

Her Royal Highness The Princess Royal visits the Quadram Institute - Quadram Institute Her Royal Highness The Princess Royal visited the Quadram Institute on the Norwich Research Park to hear about its work in protecting and improving health.

Her Royal Highness The Princess Royal today visited the Quadram Institute on the Norwich Research Park to hear about our work in protecting and improving health.

@nnuh.bsky.social
https://buff.ly/41y6NY6

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

Free, quick and easy, vote for @investinmeresearch.bsky.social to win free research money! #pwME #MyalgicE #LongCovid #MyalgicEncephalomyelitis #ME

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

'The Red Tree' and M.E. - One leaf at a time Images used with kind permission from Shaun Tan

Beautifully written by @drjogreer.bsky.social a Mum caring for a daughter with severe ME.

YouTube video by Broken Battery ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

@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...