@survivorpoet.bsky.social
Survivor and poet. Writing and thinking about trauma and recovery. Also living with ME/CFS, and Long Covid, and wishing for a cure. Lover of books, cats and kindness. Cross-stitch ninja. Scotland
X marks the spot where ME/CFS biology can be discovered. The science behind the findings blog post.
'Each genetic signal is like an ‘X’ on a treasure map indicating roughly where the researchers should dig for treasure.'
Check out Simon McGrath’s blog to learn about the science behind the initial results: shorturl.at/hadjF
The Management Team are delighted to announce DecodeME’s initial DNA results & discuss what this means for #pwME & future research.
A huge thanks to all our participants for giving their time, energy & DNA to the project.
Learn more about our findings: shorturl.at/XOVJ1
Please follow me on Instagram using the handle in the logo. Thanks 💜
25.06.2025 01:44 — 👍 1 🔁 0 💬 0 📌 0
Our evidence-based rebuttal to *that* BMJ opinion piece published last week.
This has been authored by a coalition of 19 doctors, scientists and patient advocates from around the world, with now 80+ signatures of support from the scientific community.
www.bmj.com/content/389/...
Tinsel-guarding is the most important of all the jobs 🐱
06.01.2025 18:23 — 👍 2 🔁 0 💬 0 📌 0
A pretend polaroid shows a very Christmassy Chris Ponting posing for a photo holding a #ThereForME Christmas card. He is wearing a very fetching Santa hat and a tinsel garland The image on the card shows two presents, one labelled "patient safety", the other "research". The photo is labelled "11". The design is in the #ThereForME colours.
This second image displays Chris’s handwritten message. It reads “My Christmas wish for people with ME and Long Covid is: Many scientific breakthroughs – a ‘True Dawn’ bringing us much closer to effective therapies. Chris xx”
Dec 11: Prof Chris Ponting is #ThereForME! @cgatist.bsky.social leads @decodemestudy.bsky.social, the world’s largest ME genetic study.
“My Christmas wish for people with ME and Long Covid is: Many scientific breakthroughs – a ‘True Dawn’ bringing us much closer to effective therapies. Chris xx”
A graphic featuring a stethoscope and clipboard in the background, with the text: "Ignored, blamed, and sometimes left to die – a leading expert in ME explains the origins of a modern medical scandal." Includes "action for m.e." branding, research and healthcare tags, and a QR code.
'Ignored, blamed, and sometimes left to die – a leading expert in ME explains the origins of a modern medical scandal'
Article by Prof Chris Ponting, in The Conversation
Read the full article 👇
theconversation.com/ignored-blam...
#pwME #MECFS #MyalgicE #Covid #longCovid
@rthonwesstreeting.bsky.social
I have Long Covid and ME. Can you fund research & treatment please. I would love to go back to work, but no treatment means I struggle even to dress most days. Not being able to work is due to no treatment, not lack of support. PLEASE HELP. FUND RESEARCH INTO LC & ME
Alas many GPs will latch onto the CBT & exercise as something to offer, & will be unaware of the potential damage of exercise. It’s utterly depressing that so little progress made. And yet we have a government wanting fewer on sickness benefits. Make the link government! - Fund research & treatment
28.11.2024 18:38 — 👍 5 🔁 0 💬 0 📌 0
#ME is Wikipedia’s main page feature today. en.wikipedia.org/wiki/Main_Page
25.11.2024 12:18 — 👍 51 🔁 18 💬 1 📌 1Alas I am near Edinburgh. But good luck with phase 1. Fingers crossed for a Scottish centre for phase 2
22.11.2024 20:27 — 👍 1 🔁 0 💬 1 📌 0👋
21.11.2024 07:17 — 👍 0 🔁 0 💬 0 📌 0Hello 😊
15.11.2024 17:55 — 👍 0 🔁 0 💬 0 📌 0
