@skellou.bsky.social
📣 Help us spread the word!
Yes I know it’s October - but at @thereforme.bsky.social HQ it’s already beginning to look like Christmas 🎄
📆 You have until Oct 26 to help us find our #ThereForME 2025 Advent Calendar stars!
🌟
www.justgiving.com/crowdfunding...
Funds going to the Norwegian Daratumumab trial which is now underway.
#MEcfs
(UK) “John Milne MP and cross party parliamentarians write to Wes Streeting with concerns about the ME/CFS strategy”
www.libdemvoice.org/john-milne-m...
In Liberal Democrat Voice
#MEcfs #PwME #CFS
👋 Meet young EMERG and get to know us!
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#youngEMERG is part of European ME Research Group (EMERG), a network of researchers from across Europe focused on advancing knowledge and understanding in #MECFS.
youngemerg.com/aboutus.shtml
1) A research team from Arizona university used Invasive cardiopulmonary exercise testing (iCPET) in ME/CFS and Long Covid patients.
They found that muscle oxygen diffusion was the most impaired parameter.
Today I've joined Action for ME in writing to @rthonwesstreeting.bsky.social on the chronic underfunding of ME/CFS research. Despite their prevalence, these conditions are still poorly understood and are without effective treatment.
03.09.2025 15:00 — 👍 23 🔁 8 💬 1 📌 2
LIVES WE CANNOT LIVE: Oxo Tower Gallery, 24-28th Sept.
Everyone I photographed talked about the devastating impact that #MECFS has on their lives. I've been trying to show what they lost.
#millionsmissing #documentaryphotography #PwME
Image of Chris Ponting next to quote "This is a wakeup call. These extraordinary results speak the language of people with ME/CFS, often recounting people's ME/CFS symptoms. DecodeME is now calling on researchers worldwide to join us in accelerating ME/CFS research"
"DecodeME is now calling on researchers worldwide to join us in accelerating ME/CFS research.” - Prof Chris Ponting (DecodeME Investigator).
We encourage researchers to explore and build on our findings. Apply for access to our rich dataset now shorturl.at/F8aOM
#DecodeME A brilliant interview with Chris Ponting by @davetuller1.bsky.social
Chris gave new details, including:
- They got feedback on a draft of the pre-print from independent researchers, to help them test their findings and improve the manuscript.
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youtu.be/CGUmcB_YIaA?...
For #ME/CFS, genomics assessed in >15,000 indviduals
with 8 genomic loci identified.
"Validation of ME/CFS as a biomedical condition and an important corrective to psychologizing ‘all in the mind’ perspectives on the disease”
www.science.org/content/arti...
www.research.ed.ac.uk/en/publicati...
BBC Radio 4’s Today reports on the results of the DecodeME study. Professor Chris Ponting says the largest genetic study of MECFS reveals eight DNA regions linked to the disease. 19-year-old Lucy describes years of not being believed.
youtu.be/O4wLpiRXKKs?...
Science magazine’s coverage of the DecodeME initial results : www.science.org/content/arti...
06.08.2025 20:58 — 👍 109 🔁 51 💬 6 📌 2
Channel 4 News – full segment on DecodeME results (9 mins) — the world’s largest genetic study of #MECFS — identifies eight genetic differences. Includes interviews with Prof Chris Ponting, a patient participant, Sonia Chowdhury, and MP Tessa Munt.
youtu.be/c5i_K3QEbCI?...
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
Scientists find link between genes and ME/chronic fatigue syndrome
06.08.2025 18:15 — 👍 326 🔁 155 💬 11 📌 24
#DecodeME has just blogged about its results:
www.decodeme.org.uk/x-marks-the-...
DecodeME: The Results announcement post. The graphic has a blue background with a DNA helix. In the centre of the graphic it says ‘We have released our initial DNA results! We have discovered that your genes contribute to your chances of developing ME/CFS.’ At the bottom left of the graphic is an image of a research paper.
Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population.
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Summary of our results: shorturl.at/pgsjk
Check out our full preprint paper: shorturl.at/VwN3s
Clip: Reporting Scotland previews tonight’s The Seven, where Prof Chris Ponting from Edinburgh University will discuss new findings from the DecodeME study into MECFS.
06.08.2025 17:52 — 👍 18 🔁 8 💬 2 📌 1#DecodeME - what do we know ahead of the results release tonight?
It's a genetic study looking at DNA differences between PwME and those without - these should help identify biology behind #MEcfs
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Dark blue background with image of DNA helix. At the top of the DecodeME ‘the results’ logo. Two spotlights shine on a speech bubble that says ‘Initial DNA results’. To the right of this is an image of a research paper. At the bottom of the graphic it says ‘Wednesday 7pm BST’.
The initial DNA results from DecodeME are coming this week! We will release them on our website on Wednesday 6th August at 7pm (approx).
We're letting you know the timing in advance so you can pace beforehand.
Thank you to our participants & supporters.
1) Today's a special day as the ME/CFS community is looking forward to the release of the DecodeME results at 7 PM (British Summer Time).
Here are some thoughts about what we might expect.
