Sign in

Jo

@justjo.bsky.social
290 followers 333 following 185 posts

Interested in goings on. Small life lived in a small house. Past best before date. Lefty. ME/POTS #Anti-RecoveryActivist

PostsRepliesMedia
Reposted by Jo
George Monbiot @georgemonbiot.bsky.social · 24/09/2026
Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
17925351729
Jo @justjo.bsky.social · 16/11/2025
Please donate if you can (or share to reach a bigger audience). 🤞💕
030
Reposted by Jo
George Monbiot @georgemonbiot.bsky.social · 08/10/2025
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...
theguardian.com
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
571511633
Jo @justjo.bsky.social · 18/05/2025
#ME #MEcfs #BPSNonsense iykyk
AI generated woman on a bed words say M.E. Activist Society Member
040
Reposted by Jo
Whitney Dafoe @whitneydafoe.bsky.social · 17/02/2025
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=...
whitneydafoe.com
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 ...
3824238
Jo @justjo.bsky.social · 28/01/2025
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 🎂🎁🎈🥳🎉👋💃
070
Reposted by Jo
Emma Mitchell @silverpebble2.bsky.social · 26/01/2025
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
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.
22633112
Reposted by Jo
Mark Ebenhöch aka INGLORIOUS BASTARD @realmarkebenhoch.bsky.social · 25/01/2025
Think about this.. for a second. Doesn't take you much time to get it! Them? Eons.😉
701261826721
Reposted by Jo
Tessa Munt MP 🔶 @tessamunt.bsky.social · 20/12/2024
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.
85311
Jo @justjo.bsky.social · 20/12/2024
@rolypeck.bsky.social Thought you might enjoy this.
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.
030
Jo @justjo.bsky.social · 19/12/2024
Petra, I can’t find you! Hope you get to see this. Happy Birthday 🥳 🎂🎈
010
Jo @justjo.bsky.social · 16/12/2024
@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
020
Reposted by Jo
Action for ME @actionforme.bsky.social · 16/12/2024
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
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.
23719
Jo @justjo.bsky.social · 05/12/2024
Finally spent a garden Centre voucher I received last Christmas! Very happy with them 🥰
Turquoise pot with leafy Auruba Japonica plant
050
Reposted by Jo
Candace D. @diaryofasickgrl.bsky.social · 04/12/2024
Hating yourself for things you can’t control will never make you better, it will only make you bitter.
0446
Jo @justjo.bsky.social · 03/12/2024
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
161
Reposted by Jo
Emma Mitchell @silverpebble2.bsky.social · 01/12/2024
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 🌿:
Small wreaths made using twigs from several different trees and shrubs 🌿
6370977
Jo @justjo.bsky.social · 01/12/2024
Smashing! 😊
Lindt Teddy Advent calendar with door 1 open and empty
010
Jo @justjo.bsky.social · 28/11/2024
🤣🤣🤣
130
Reposted by Jo
Paula Knight 🎨✒️♿ @paulaknight.bsky.social · 28/11/2024
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...
wellcomecollection.org
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.
56322
Jo @justjo.bsky.social · 27/11/2024
👍
000
Jo @justjo.bsky.social · 27/11/2024
It’s time 😊
Small table top Christmas tree with coloured lights and ballerina on top
2110
Jo @justjo.bsky.social · 27/11/2024
Buggered up my straw because I didn’t have my glasses on and I was trying to insert it into the QR code 🤦‍♀️🤣 🤓
Small carton of apple juice with Jo holding a bent straw
040
Reposted by Jo
sarah boothby @swastrosarah.bsky.social · 27/11/2024
The #ME Association, a national organisation, has been dominated by this man so long it's transformed into a mental health charity. ME is not a mental illness. I wasted months meeting MEA reps (Trustees & employees) pre inquest. 2/3 resigned after listening to me. thesicktimes.org/2024/11/22/a...
thesicktimes.org
Advocacy groups suspend ties with U.K. charity The ME Association over chairman’s op-ed - The Sick Times
Earlier this month, the chairman of the United Kingdom charity the ME Association, Neil Riley, published a controversial op-ed in the charity’s magazine arguing that many people with Myalgic Encephalo...
36122
Jo @justjo.bsky.social · 27/11/2024
benefitsandwork.co.uk/news/is-labo...
benefitsandwork.co.uk
Is Labour planning to scrap the WCA?
Get the benefits you're entitled to: help with personal independence payment (PIP), universal credit (UC), employment and support allowance (ESA),disability living allowance (DLA). Claims, assessments...
000
Jo @justjo.bsky.social · 27/11/2024
Treated myself to 2 new pairs of Snag tights. I always found tights to be uncomfortable and restricting but when I discovered Snag just before I got ill I was delighted. Soft, stretchy, they never droop or fall down. They last ages and wash well. Packed with care too 😍
Two blue and white striped paper bags labelled with Black 80 denier and Slate 80 denier. Delivered in a brown paper parcel
010
Jo @justjo.bsky.social · 26/11/2024
#GBBO ready Jaffa cakes are small these days - they’re on a saucer!
Snowman mug of tea. 3 Jaffa cakes
010
Jo @justjo.bsky.social · 26/11/2024
#GBBO ready Jaffa cakes are small these days - they’re on a saucer!
Snowman mug of tea. 3 Jaffa cakes
000
Jo @justjo.bsky.social · 26/11/2024
ITVx have got an offer on this week. Their add-free premium service is £2 a month for 2 months - first week free. It then goes to £5.99 in Feb but you can cancel any time before that date. I’m giving it a go so I don’t have to endure ads plus I can download stuff. Nice for Xmas viewing 😊
010
Jo @justjo.bsky.social · 26/11/2024
That time of year again. The Reith Lectures have begun on Radio 4 This year it’s about violence. Interesting so far 👍
030
Jo @justjo.bsky.social · 26/11/2024
I watched After The Party on Ch4 and very much enjoyed the great acting, especially little Walt. Once I understood the flashbacks to the party (seamlessly cut in so hard to notice at first which confused me a tad) it was great. Ending was a disappointment for me.
040
Reposted by Jo
ThereForME @thereforme.bsky.social · 26/11/2024
Make sure you’re following #ThereForME on our new social media accounts! You can find links here: linktr.ee/ThereForME #ComingSoon
On a bright orange background sits a dark blue Christmas tree, decorated with sparkling fairy lights, baubles and a star on the top. It sits on the ground, which also looks like a “programme loading” bar. Underneath are the words “Coming soon…”
44631
Jo @justjo.bsky.social · 25/11/2024
😂
030
Reposted by Jo
Seth Abramson @sethabramson.bsky.social · 25/11/2024
320180762451
Jo @justjo.bsky.social · 25/11/2024
My new t-shirt from Qwertee
Grey t shirt. Nike swoosh has a tired panda on it. It says “No You do it”
1232
Jo @justjo.bsky.social · 25/11/2024
Just discovering this person. Catherine Vandome. Recovering, not recovered, using the Perrin technique. Her partner has ME too and trained under Perrin to be a practitioner because it helped him so much. Looks interesting. She’s a very engaging person. m.youtube.com/watch?v=qMJH...
m.youtube.com
Introduction: Catherine Vandome & ME - Published Author, Stand-Up Comedian & Ambassador for M.E.
YouTube video by Catherine Vandome & ME Podcast
030
Reposted by Jo
Reader of Banned Books @readerofbannedbook.bsky.social · 24/11/2024
308454576679
Jo @justjo.bsky.social · 24/11/2024
@davet.bsky.social Haven’t listened - I just read the post and thought of you.
120
Reposted by Jo
Emma Mitchell @silverpebble2.bsky.social · 23/11/2024
Early winter berry palette, for the possible dopamine it might trigger in your brain. The colour of spindle berries (bottom rightish) never seems quite real...
641972324
Reposted by Jo
Chronic Illness Humor @chronicillness.bsky.social · 24/11/2024
autoimmune disorders #autoimmune #immunesystem #chronicillness
A balloon with an arrow pointing at it that says "me, Minding My Own Business"

A needle about to poke the balloon that says "My Immune System, Ready to Attack Me"
928938
Reposted by Jo
Danielle Beckman @daniellebeckman.bsky.social · 23/11/2024
You may think that neurological symptoms in #LongCovid are for old people, but it is the opposite. Young adults (18–44 years) and middle-aged (45–64 years) with mild acute #COVID cases (non-hospitalized), represent 90% of the cases of #NeuroCovid. Read here: onlinelibrary.wiley.com/doi/10.1002/...
Screenshot of the study published yesterday Annals of Neurology. Title: Neurologic Manifestations of Long COVID Disproportionately Affect Young and Middle-Age Adults. Interpretation: Younger and middle-age individuals are disproportionally affected by post-acute sequelae of SARS-CoV-2 infection (Neuro-PASC) regardless of acute COVID-19 severity. Although older people more frequently have abnormal neurologic findings and comorbidities, younger and middle-age patients suffer from a higher burden of Neuro-PASC symptoms and cognitive dysfunction contributing to decreased QoL. Neuro-PASC principally affects adults in their prime, contributing to profound public health and socioeconomic impacts warranting dedicated resources for prevention, diagnosis and interventions. ANN NEUROL 2024
30551260
Jo @justjo.bsky.social · 23/11/2024
Pass the Rennies! 😆 #SaturdayTreat
Plate of Chinese takeaway - lemon chicken, chicken ball, rib, satay, prawn thingy, spring roll and prawn crackers. Oh and chips
020
Reposted by Jo
Tom Kindlon @tomkindlon.bsky.social · 23/11/2024
Neurologic Manifestations of Long COVID Disproportionately Affect Young and Middle-Age Adults onlinelibrary.wiley.com/doi/10.1002/... Interesting including because research suggests the onset of ME/CFS may more common in the young and middle-aged #LongCovid #PASC #MEcfs #CFS #PwME 1/
Interpretation
Younger and middle-age individuals are disproportionally affected by Neuro-PASC regardless of acute COVID-19 severity. Although older people more frequently have abnormal neurologic findings and comorbidities, younger and middle-age patients suffer from a higher burden of Neuro-PASC symptoms and cognitive dysfunction contributing to decreased QoL. Neuro-PASC principally affects adults in their prime, contributing to profound public health and socioeconomic impacts warranting dedicated resources for prevention, diagnosis and interventions. ANN NEUROL 2024
26418
Reposted by Jo
MoleyME Caroline @moleyme.bsky.social · 23/11/2024
Hello there it’s here Storm Bert 🤣
Bert the yellow tall guy from Sesame Street in a striped jumper holding an umberella in a town raining heavily
0102
Reposted by Jo
Susie Dent @susiedentwords.bsky.social · 23/11/2024
Etymology of the day: to be ‘blowing a hoolie’ (or ‘hooley’) was probably inspired by the Orkney word ‘hoolan’, a howling gale, with a touch of the ‘hooley’ that is a very noisy party thrown in.
1234489548
Jo @justjo.bsky.social · 23/11/2024
Dave brought Cadburys chocolate fingers. Apparently 4 is one portion
media.tenor.com
a man in a suit and tie is laughing and covering his mouth with his hand .
Alt: a man in a suit and tie is laughing and covering his mouth with his hand .
170
Jo @justjo.bsky.social · 23/11/2024
Weather like this makes me glad I don’t have to go out to work #SecondaryGain
media.tenor.com
a person in a blue shirt is standing in front of a car in the rain .
Alt: a person in a blue shirt is standing in front of a car in the rain .
140
Jo @justjo.bsky.social · 22/11/2024
Charge up your devices-appliances and find your torches in readiness for Storm Bert in case your power goes off. #StormBert
170