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30.01.2026 20:44 β π 1 π 0 π¬ 0 π 0@justjo.bsky.social
Interested in goings on. Small life lived in a small house. Past best before date. Lefty. ME/POTS #Anti-RecoveryActivist
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30.01.2026 20:44 β π 1 π 0 π¬ 0 π 0Please donate if you can (or share to reach a bigger audience). π€π
16.11.2025 08:05 β π 2 π 0 π¬ 0 π 0ME/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 ...π§΅
www.theguardian.com/society/2025...
Thank you. Your continued support and speaking up for us is much appreciated. Why canβt everyone see whatβs happening?
09.10.2025 09:32 β π 4 π 0 π¬ 0 π 0AI generated woman on a bed words say M.E. Activist Society Member
#ME #MEcfs #BPSNonsense
iykyk
I could not be happier
17.02.2025 18:36 β π 1 π 0 π¬ 0 π 0I started eating real food again in 2024!β¦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 wouldnβt let me. The gifs are crap. So here are a few emojis in their place
ππππ₯³πππ
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 photoπ-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.π
Thanks βΊοΈ
20.12.2024 21:35 β π 1 π 0 π¬ 0 π 0Delighted to have joined the APPG ME and been appointed an officer. Too many people live with ME, with too little understanding, and inadequate care. Itβs time to engage - Iβm #ThereForME.
20.12.2024 16:02 β π 54 π 11 π¬ 8 π 3Hard to describe because itβs 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 canβt find you! Hope you get to see this. Happy Birthday π₯³ ππ
19.12.2024 09:15 β π 1 π 0 π¬ 0 π 0Cover of Homes & Gardens with a dining table and lamp - no fire.
16.12.2024 13:59 β π 0 π 0 π¬ 1 π 0@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
16.12.2024 13:56 β π 2 π 0 π¬ 0 π 0News announcement image with a DNA strand in the background. Text reads: βFirst of a kind study to uncover genetic causes of ME.β Includes logos for Action for ME, The University of Edinburgh, Edinburgh Innovations, and Oxford Nanopore Technologies. Bottom corner has a QR code with labels βOur newsβ and βResearch.β
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 Nanoporeβs 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
π¨ SequenceME
A groundbreaking partnership has launched today, bringing together experts from Action for ME, Oxford Nanopore Technologies & the University of Edinburgh.
Read more π
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 π₯°
05.12.2024 13:41 β π 5 π 0 π¬ 0 π 0ππ
04.12.2024 22:22 β π 1 π 0 π¬ 0 π 0Hating yourself for things you canβt control will never make you better, it will only make you bitter.
04.12.2024 02:10 β π 44 π 6 π¬ 0 π 1Now 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
03.12.2024 17:46 β π 6 π 1 π¬ 1 π 0Small wreaths made using twigs from several different trees and shrubs πΏ
My brainβs not well at all atm but small creative routines can help so Iβm going to try to post a (hopefully dopamine-boosting) photo for you every day through tillπ. Some small wreaths bc I really like twiggy circles πΏ:
01.12.2024 12:25 β π 716 π 80 π¬ 63 π 7Lindt Teddy Advent calendar with door 1 open and empty
Smashing! π
01.12.2024 22:02 β π 1 π 0 π¬ 0 π 0π€£π€£π€£
28.11.2024 14:40 β π 3 π 0 π¬ 1 π 0Fantastic 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.
28.11.2024 09:20 β π 3 π 0 π¬ 0 π 0π
27.11.2024 22:25 β π 0 π 0 π¬ 0 π 0Itβs proper cheered me up βΊοΈ
27.11.2024 21:47 β π 1 π 0 π¬ 1 π 0It was no effort. I had put it away still up and without taking the decs off it π so all I had to do was take the bin bag off it and carry it from one room to another π Very #ME friendly.
27.11.2024 21:02 β π 1 π 0 π¬ 1 π 0Small table top Christmas tree with coloured lights and ballerina on top
Itβs time π
27.11.2024 20:56 β π 11 π 0 π¬ 2 π 0