Jo

Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome Research could offer hope for ME patients – but some experts urge caution and say more studies needed

ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long.
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...

Thank you. Your continued support and speaking up for us is much appreciated. Why can’t everyone see what’s happening?

AI generated woman on a bed words say M.E. Activist Society Member

#ME #MEcfs #BPSNonsense
iykyk

I could not be happier

I Started Eating Food Again in 2024...What Will 2025 Bring? I started eating real food again in 2024!...I have now stopped the Peptamen food formula completely, and get all my calories from real food!...It has come time that I feel stable enough with this new ...

I started eating real food again in 2024!…I have now stopped the Peptamen food formula completely, and get all my calories from real food!...And I want to tell you because I want you to hear this story!...what will 2025 bring? #MECFS

New post on my blog:
www.whitneydafoe.com/mecfs/?post=...

Happy Birthday! @kschnickelfritz.bsky.social
Tried to post a Bitmoji but it wouldn’t let me. The gifs are crap. So here are a few emojis in their place
🎂🎁🎈🥳🎉👋💃

A collection of bright summer flowers I grew in my garden, placed on a dark enamelled chipped background and arranged to create a rainbow. Species/varieties include nicotiana, Russian lavender, marigold, nasturtium, viola, poppy seedhead, fennel, cosmos, Mexican fleabane, cornflower, borage, larkspur and sweet pea.

If social media's stressing you out just now (me too) then here's a gentle antidote:
pause for a few seconds & focus on the details in my photo👇-your brain's very likely to release dopamine,lifting your mood due to the bright colours & is ikely to relax in response to seeing these botanical patterns

Think about this.. for a second. Doesn't take you much time to get it!
Them? Eons.😉

Thanks ☺️

Delighted to have joined the APPG ME and been appointed an officer. Too many people live with ME, with too little understanding, and inadequate care. It’s time to engage - I’m #ThereForME.

Hard to describe because it’s a little story and the blanks are made up with written music notes from Christmas songs for the reader to decipher.

@rolypeck.bsky.social
Thought you might enjoy this.

Petra, I can’t find you! Hope you get to see this. Happy Birthday 🥳 🎂🎈

Cover of Homes & Gardens with a dining table and lamp - no fire.

@actionforme.bsky.social Please reconsider posting on X even if just for info and not interaction/discussion. So many people on there (including DecodeME participants) have not seen your research announcement today. #ME

News announcement image with a DNA strand in the background. Text reads: ‘First of a kind study to uncover genetic causes of ME.’ Includes logos for Action for ME, The University of Edinburgh, Edinburgh Innovations, and Oxford Nanopore Technologies. Bottom corner has a QR code with labels ‘Our news’ and ‘Research.’

A quote from Sonya Chowdhury, CEO of Action for ME, emphasises that the collaboration centres people with lived experience of ME. The initial study phase focuses on severe cases, ensuring those most affected play a key role in advancing understanding and driving meaningful change.

A quote from Dr Gordon Sanghera, CEO of Oxford Nanopore Technologies, highlights DecodeME as the largest ME/CFS study. He states the next step, SequenceME, uses Oxford Nanopore’s sequencing technology to uncover genetic insights, improving care and enabling personalised medicine for people with ME.

A quote from Professor Chris Ponting of the University of Edinburgh, emphasising the opportunity of SequenceME to utilise world-class technology to address the medical puzzle that is ME, building on the work of DecodeME.

1/2

🚨 SequenceME

A groundbreaking partnership has launched today, bringing together experts from Action for ME, Oxford Nanopore Technologies & the University of Edinburgh.

Read more 👇

www.actionforme.org.uk/news/sequenc...

#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #MEResearch

Turquoise pot with leafy Auruba Japonica plant

Finally spent a garden Centre voucher I received last Christmas! Very happy with them 🥰

👍😊

Hating yourself for things you can’t control will never make you better, it will only make you bitter.

Now is the time to make sure you have enough medication to see you through the Xmas period and/or arrange your repeat prescription in good time #ME #ChronicIllness #LC

Small wreaths made using twigs from several different trees and shrubs 🌿

My brain’s not well at all atm but small creative routines can help so I’m going to try to post a (hopefully dopamine-boosting) photo for you every day through till🎄. Some small wreaths bc I really like twiggy circles 🌿:

Lindt Teddy Advent calendar with door 1 open and empty

Smashing! 😊

🤣🤣🤣

Living with ME Nine people with ME reveal their unremitting struggles as they negotiate life with their illness, including their battles to be believed, diagnosed and supported.

Fantastic that this photography project by Jeremy Jeffs about ME is on display @wellcomecollection.bsky.social

Hope lots of people see it.

(Was meant to take part but wasn't well enough to have anyone here, and have been shielding also.) #pwME
#MEcfs

wellcomecollection.org/stories/livi...

It looks excellent. Jeremy is a lovely human and has captured some great photos there.

👍

It’s proper cheered me up ☺️

It was no effort. I had put it away still up and without taking the decs off it 😊 so all I had to do was take the bin bag off it and carry it from one room to another 😆 Very #ME friendly.

Small table top Christmas tree with coloured lights and ballerina on top

It’s time 😊

Maybe they only track it for 48 hours then it’s in the lap of the gods.

Small carton of apple juice with Jo holding a bent straw

Buggered up my straw because I didn’t have my glasses on and I was trying to insert it into the QR code 🤦‍♀️🤣 🤓