Reposted by Sarah HTessa Munt MP 🔶 @tessamunt.bsky.social · 24/09/2026Thank you so much, George! Your conclusion speaks volumes, reflecting so much that I hear from #pwME. 37326
Reposted by Sarah HFrances Ryan @francesryan.bsky.social · 24/09/2026As I lay in bed with PEM, always grateful to my colleague @georgemonbiot.bsky.social for helping bring M.E. into mainstream attention. The way people with M.E. are ignored and actively harmed by medics who have been trusted to help them is a hidden scandal. www.theguardian.com/commentisfre...theguardian.comAbandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George MonbiotChanges 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 718956
Reposted by Sarah HNatasha Devon @natashadevon.bsky.social · 24/09/2026George will be coming on my show this weekend to discuss this very important article. 29436137
Reposted by Sarah HGeorge Monbiot @georgemonbiot.bsky.social · 24/09/2026Here'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.comAbandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George MonbiotChanges 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 17925211725
Reposted by Sarah HGeorge Monbiot @georgemonbiot.bsky.social · 21/09/2026Thanks so much everyone for a massive response. I've now had as many emails as I can cope with, so no more please - thank you. They paint a really grim and heatbreaking picture. The neglect and abuse of patients goes on and on. I hope to try to do the issue justice. #ME/CFS 28769201
Reposted by Sarah HLizzy @hopefullizzy.bsky.social · 17/09/2026I’m so thankful I can do a few minutes of art, because this is all so much to deal with 24/7 and the grief and frustration is overwhelming. As are the adrenaline surges, so I try to utilise them gently, to express some of the hurt. 2111
Reposted by Sarah HLizzy @hopefullizzy.bsky.social · 31/08/2026Clean hair is just the best feeling!!! If you’ve never had to go longer than 2weeks without having your hair washed, I can only explain to you the soreness, horrendous itch, the smell of grease, and the build up of dead skin (particularly if it’s been 4-8weeks+ so to feel it clean again is HUGE 🙌🏼 191
Reposted by Sarah HLizzy @hopefullizzy.bsky.social · 26/08/2026The next APPG (All Party Parliamentary Group) for M.E is on 2nd September. If you haven’t already, it’s worth asking your MP to attend. 034
Reposted by Sarah HLizzy @hopefullizzy.bsky.social · 20/08/2026www.actionforme.org.uk/wp-content/u... One of the most necessary and accurate (to my and many others’ experiences) reports I’ve ever seen. I wish all friends, family and certainly medical teams would read it. 1/7actionforme.org.uk 1166
Reposted by Sarah HThe Sick Times @thesicktimes.org · 27/07/2026"The quiet normalization of COVID-19 in our society has come at the great expense of school-age children and adolescents." thesicktimes.org/2026/07/24/t... 212063
Reposted by Sarah HEmma Mitchell @silverpebble2.bsky.social · 27/07/2026I learned a lovely thing yesterday: a group of brittle stars (either fossilised or dancing very slowly in a Devon rockpool) is called …a galaxy: 10853160
Reposted by Sarah HGermaine Hypher - Crafting A Path Through Illness @germainehypher.bsky.social · 30/06/2026This project, by an anonymous ME patient, uses the voices of people with Severe ME for everyone with ME who often has to make themselves worse just trying to access healthcare. nicecollages.portfoliobox.net/the-collages #mecfs #ME/CFS #chronicillness #invisibleillness #art #collage #CraftSkynicecollages.portfoliobox.netNICE Collages for ME-informed HealthcareA creative project raising the voices of people with Severe ME, highlighting that the NHS has not implemented NICE Guidance of 2021 (NG206) 02514
Reposted by Sarah Hwamesmecfs.bsky.social @wamesmecfs.bsky.social · 29/05/2026Me Time is a series of online activities for carers in Wales. June's activities include: Book Club (1st); Lineart Workshop (3rd); Mindfulness (9th); Finding Support (11th); Alzheimer's society (16th) tinyurl.com/36seh36y 011
Reposted by Sarah HLizzy @hopefullizzy.bsky.social · 02/06/2026Can’t believe it’s a whole year ago that the #Mirrorbox visited its first location,Troopers Hill in Bristol. What a humbling experience to have had so many people turn out to stand or sit in the Mirrorbox, 1 by 1, to hear my message, my voice. Both people I’ve known a long time, & total strangers. 172
Reposted by Sarah HDr Nicola Clague-Baker @claguenjc36.bsky.social · 12/05/2026It took 7 years but we have managed to publish an article in the physiotherapy frontline magazine "Do no harm". Thank you to the @thecsp for publishing. Over 65,000 UK physios will see this important message about #pwme @physiosforme.bsky.social 23716
Reposted by Sarah HLizzy @hopefullizzy.bsky.social · 12/05/2026As always, I will repost this today #MEawarenessday #MECFS #millionsmissing The irony is, that in comparison to now, I was well when I wrote this. And yet in comparison to healthy, I was so so far from being ‘well.’ inews.co.uk/news/health/...inews.co.ukLiving with chronic fatigue syndrome: 'I used to climb mountains, now I need a stair lift'Lizzy Horn was enjoying being a teenager until she was struck down with an illness she has never recovered from. She tells Paul Gallagher how daily life has become such a struggle 0158
Reposted by Sarah HLucibee @lucibee.bsky.social · 03/03/2026I'm going to do a thread 🧵 here on the questions asked in UK Parliament about the #MEDeliveryPlan specifically and ME in general since November 2025. Due to the vagaries of threads in BSky 🙄, this might not work as planned, but let's give it a go... 3187
Reposted by Sarah HPaul Hennell @hennell.bsky.social · 03/03/2026With the sad news that Richard Osman is leaving Richard Osman's House of Games I've been coming up with replacement shows #replacingRichard 221
Reposted by Sarah HAdam @abrokenbattery.bsky.social · 17/02/2026TW: Update on Savannah via GoFundMe: Donations have now funded legal action. Sonya Chowdhury (CEO Action for ME) has briefed a solicitor as well as Savannah’s MP. I’ve donated again. Also includes a diary style update of her experience in hospital. www.gofundme.com/f/severemerg...gofundme.comDonate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam PearceVery Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital 02416
Reposted by Sarah HLizzy @hopefullizzy.bsky.social · 09/02/2026My consultants are talking with my MP today about #SevereME provision etc because many of our situations are so desperate, there is nothing on offer, no guidance for them, no treatments for us. @wesstreeting It HAS to change. Funding research, and funding a specialist service will save lives. 1186
Reposted by Sarah HLizzy @hopefullizzy.bsky.social · 07/02/2026Ok so, update after an incredibly tough week (& months!) which I’m not ready to go into. IV fluids have been reinstated. My consultant(s) have been really good this week, particularly one, who came in from home during sudden personal leave to see me with mum, with another consultant. 2111
Reposted by Sarah HLizzy @hopefullizzy.bsky.social · 10/01/2026I saw the moon this morning. Have been in hospital 7weeks now almost. It’s tough. I am forever amazed by my courage, my bravery, but it takes a lot. 47days since I breathed outside air from a window or door. 7weeks since I felt the cold on my face. Thinking of you all. Keep going. 9884
Reposted by Sarah HPaul Hennell @hennell.bsky.social · 11/10/2025In case you're wondering why I'm posting monkeys - I'm taking part in Orangetober. Whenever I see something orange this October, I'm taking a photo and asking you to consider donating to Jenny's urgent neurosurgeries. gofundme.com/savejennygofundme.comDonate to Jenny Can’t Be Left Like This, organized by Jenny RowboryWe never expected to be here again, asking for help. The craniocervical fusion surgery… Jenny Rowbory needs your support for Jenny Can’t Be Left Like This 031
Reposted by Sarah HPaul Hennell @hennell.bsky.social · 11/10/2025I've been terrible at spotting orange things for @jennyrowbory.bsky.social 's #orangetober so figured I'd bring a friend out with me today! 133
Reposted by Sarah HGeorge Monbiot @georgemonbiot.bsky.social · 08/10/2025ME/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.comScientists develop first ‘accurate blood test’ to detect chronic fatigue syndromeResearch could offer hope for ME patients – but some experts urge caution and say more studies needed 571511633
Reposted by Sarah Hsarah boothby @swastrosarah.bsky.social · 31/07/2025Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear. #MEKills #HumanRights 24216114
Reposted by Sarah HThereForME @thereforme.bsky.social · 22/07/2025After 3+ years of waiting the Final Delivery Plan for ME is being released today. Our comment 👇 32211
Reposted by Sarah H@doublewhammied @doublewhammied.bsky.social · 09/07/2025This seems big. "By studying bioenergetic characteristics of immune cells in healthy controls + #ME/#CFS & #longcovid patients, we find lymphocytes from ppl w/ME/CFS & LC exhibit elevated oxidative stress. Due 2 excess oxidative stress & consequent mitochondrial ..." 1/2 #IDSky #CanSky #MedSkypnas.orgOxidative stress is a shared characteristic of ME/CFS and Long COVID | PNASOver 65 million individuals worldwide are estimated to have Long COVID (LC), a complex multisystemic condition marked by fatigue, post-exertional m... 68933
Reposted by Sarah HPrivate Eye Magazine @privateeyenews.bsky.social · 27/06/2025Real photo of the week From the new Private Eye, out now. 19429108
Reposted by Sarah Hmookpixie @mookpixie.bsky.social · 18/06/2025A picture from the day I mention in my message for the mirrorbox. I am so happy it’s another blue sky and sunshine day today. You can listen to my message here: www.iwouldbehereificould.com/message/glas... 171
Reposted by Sarah HAdam @abrokenbattery.bsky.social · 29/05/2025TW: Highlights BBC Radio Bristol - Alison Larkman talks about the Mirrorbox Project which shares the voices of people with #MECFS & #LongCovid — including the severe who are not seen: bedbound, tube-fed, living in darkness. 2188
Reposted by Sarah HRob Acton-Campbell @robcrewshole.bsky.social · 01/06/2025Troopers Hill chimney reflected in the Mirror Box earlier today. People coming out were visibly moved by Lizzy's - @hopefullizzy.bsky.social - message. Next Ashton Court, then Glastonbury Tor. www.iwouldbehereificould.com/mirrorbox-jo... 122
Reposted by Sarah HLizzy @hopefullizzy.bsky.social · 02/06/2025Yesterday was phenomenal! 160+ people came out and battled the wind to stand in a #mirrorbox to listen to my message, while looking at a place I love, & for many, that they do too. I’ve been wiped out today from the messages & hype, it was so lovely having my family come home & tell me about it all 1142
Reposted by Sarah HHannah @pipsminitwee.bsky.social · 12/05/2025I have been missing from life since 2000. So many #PwME are just existing, not living. It is a much misunderstood, cruel, often mocked illness. #MEawarenessDay #LearnFromME #BelieveME #MyalgicE #PwME #MillionsMissing #StillTheSaME #WorldMEday #MEawarenessWeek #MEnotCFS 0135
Reposted by Sarah HSomething Chronic @somethingchronic.bsky.social · 12/05/2025ME is one of the cruellest diseases you can possibly have. Most people think it’s as insignificant as having a cold. #May12 #MEAwarenessDay #StillTheSaME #StillSickStillFighting #ME #MECFS #SevereME #LongCovid #EndMEcfs #MEAction #MillionsMissing #GreatestMEdicalScandal #ThereForME #BerlinBuyers 12410
Reposted by Sarah HJulie Houston @julesahouston.bsky.social · 12/05/2025Nothing new to say this #MEAwarenessDay. My brain’s wrecked, my body’s broken, and after 27 years, nothing has changed: no progress, no treatments, no cure. It's #StillTheSaME and the fury burns. Sending love & solidarity to you all. #LeftToRot 14016
Reposted by Sarah HTessa Munt MP 🔶 @tessamunt.bsky.social · 17/04/2025As Lizzy illustrates so powerfully, PIP is vital for so many #pwME #pwLC. With so much concern at proposed welfare reforms, it’s been good to start work with @joplatt.bsky.social and @actionforme.bsky.social to better understand issues, and how to mitigate, with joint APPG ME/LC meeting next week. 1168
Reposted by Sarah HTessa Munt MP 🔶 @tessamunt.bsky.social · 08/05/2025So delighted that all 72 LibDem MPs signed this letter to @rthonwesstreeting.bsky.social @ashleydaltonmp.bsky.social asking the govt to back the ME/CFS Delivery Plan with the resources it deserves. May this be a huge encouragement to the ME community and the start of meaningful change. #WorldMEDay 1114757
Reposted by Sarah HEmily Sturgess @emilysturge.bsky.social · 12/05/2025This World ME day, things need to change. 074
Reposted by Sarah HPatient Safety Learning @patientsafetylearning.org · 12/05/2025Today is #WorldMEDay. In this blog, shared on our patient safety platform the hub earlier this year, @thereforme.bsky.social look at the barriers that impact access to NHS care for people with ME and Long Covid. www.pslhub.org/learn/improv... #MEAwarenessDaypslhub.orgExploring the barriers that impact access to NHS care for people with ME and Long Covid#ThereForME explores the barriers that impact access to NHS care for people with ME and Long Covid, and encourages the patient community to share their experiences 01812
Reposted by Sarah HThereForME @thereforme.bsky.social · 12/05/2025On #WorldMEDay the UK ME community faces a twofold threat: the loss of critical welfare benefits, and a lack of meaningful treatments to pave their way back to work. This must change. We’re asking the government to back the new ME Delivery Plan with the resources it deserves. 12718
Reposted by Sarah HEmma Mitchell @silverpebble2.bsky.social · 25/04/2025My new workshop:small museums for mental health, is now live. I'll teach you how creating small museums alters brain biochemistry to improve mental health & we'll make small museums together 24 May,zoom, recording available afterwards Open to anyone,anywhere workshops.emmamitchell.uk/courses/smal... 11410191
Reposted by Sarah HLizzy @hopefullizzy.bsky.social · 31/03/2025@teamlabouruk.bsky.social These are a FEW of the things I use my PIP for… Stair lift, recliner, hot waterbottles for pain relief & warmth, adapted cushion, portable toilet, medical devices to help drs assess, noise cancelling headphones, adaptive clothes/coats, wash bowls/cloths 3163
Reposted by Sarah HRadio Lento @radiolento.bsky.social · 28/01/2025Need a longer listen to help you drift off? Here are a few of our longer *sleep safe* episodes to try.radiolento.wordpress.comLonger sleep safe episodesLonger Radio Lento episodes to listen to while resting or trying to get to sleep. 02212
Reposted by Sarah HPaula Knight 🎨✒️♿ @paulaknight.bsky.social · 28/01/2025Once again please: Online/ virtual/ social media are the ONLY ways many can be involved in the public sphere and connect to other human beings. If, after 5 yrs' pandemic, you think that in-person is superior, you need to take a deeper look at who isn't at your table/ is excluded. #disability #EDI 215650
Reposted by Sarah HAlexis Gilbert @alexisme.bsky.social · 15/01/2025Despite being severely unwell @katiamek.bsky.social spent her precious energy to speak out about this negligent treatment she’s been through in an effort to stop others experiencing the same. time.com/7206080/long... 0179
Reposted by Sarah HCarl Bovis @carlbovisnature.bsky.social · 06/01/2025My seed, keep away!! 😁 A male Chaffinch and Great Tit at RSPB Greylake in Somerset last week. 😊🐦 #birds 🪶 1571275
Reposted by Sarah HChronically ill Artists Network @chronicallyillart.bsky.social · 11/12/2024ICYMI visual notes from our networking events this past year, all done by the wonderful Amber Anderson! We'll be sure to have more events in the new year, so follow us and keep an eye out for those announcements :) 163
Reposted by Sarah HC.H. Romatowski @romatowski.bsky.social · 25/11/2024Today’s featured article on Wikipedia’s homepage is the ME/CFS entry! If you’re not familiar with ME/CFS, this is a great overview of a debilitating condition very commonly triggered by Covid. en.wikipedia.org/wiki/Myalgic... 821378