Reposted by LizzyThereForME @thereforme.bsky.social · 01/10/2026The Guardian has published our letter responding to George Monbiot's article about how people with ME are abandoned, dismissed and gaslighted. We point out the inadequate political attention, and call for action from the Health & Social Care Select Committee. www.theguardian.com/society/2026... 18122
Reposted by LizzyTessa Munt MP 🔶 @tessamunt.bsky.social · 14hThanks @thereforme.bsky.social! There must be serious review of the government’s inadequate response to #ME, with its cost to us all. Still considering best options to call for including @georgemonbiot.bsky.social proposed public inquiry, Select Committee Inquiry, a Czar or even referral to HSSIB. 58233
Reposted by LizzyAdam @abrokenbattery.bsky.social · 17h“If we weren’t so ill, those of us with this awful disease would be shouting it from the rooftops.” Eleanor Dent describes being largely housebound with #MECFS, from difficulties getting benefits to harmful advice, and still no treatment after 24 years. 03917
Reposted by LizzyAdam @abrokenbattery.bsky.social · 01/10/2026“I was just horrified… The most heartbreaking stories… Treatment is absolutely appalling for patients.” @georgemonbiot.bsky.social speaking to @davetuller1.bsky.social about the hundreds of messages he received from people around the world with #MECFS about their experiences of treatment. 87329
Reposted by LizzyGeorge Monbiot @georgemonbiot.bsky.social · 01/10/2026Far from taking pride in it, the men who killed this magnificent animal should be deeply ashamed. That swift, sleek, wonderful monster, flashing with holographic colours, reduced to a dead black lump. www.devonlive.com/news/devon-n...devonlive.comMonster 282kg tuna landed in Brixham is 'heaviest ever' catchGiant £4,000 Bluefin tuna caught off Devon coast could be heading to Michelin-starred restaurants 761359306
Reposted by LizzyEmma Mitchell @silverpebble2.bsky.social · 01/10/2026I’m 54 and I honestly think this is as joyful now as it was when I was 4, in 1976: 5575440
Reposted by LizzyColleen Steckel @colleensteckel.bsky.social · 29/09/2026"Still blow gently on embers" - that's an excellent image for keeping hope alive... May we all have relief from this horror soon. Imagine the world we could build if all pwME lived with the the strength of tall flames instead of flickering embers. 071
Lizzy @hopefullizzy.bsky.social · 29/09/2026In 3weeks I turn 32. I’ve never had a relationship. Never been on holiday with friends. Never finished my education. Never been out to work. Never lived away from family. Each year, my world gets smaller. It’s 2yrs since I ate a meal. 16years since I went out on my own. I have #MECFS 2196
Reposted by LizzyLong Covid Advocacy @longcovidadvoc.com · 26/09/2026💬 Reminder that George Monbiot will be talking to Natasha Devon on LBC today about #ME. 📻 6-9pm Saturday 🔥 Both have been exceptional allies to #pwME so it should be a good one! Note: if listening on phone, you need the LBC app which needs setting up before. www.lbc.co.uk/radio/lbc.co.ukLBC Radio - Listen & Watch Live | LBCTalk radio for the UK, letting you have your say on the big issues of the day, with breaking news and opinion. 24417
Reposted by LizzyBinita Kane @binitakane.bsky.social · 24/09/2026Thank you George. This is the absolute reality of what patients are going through - it’s great to see mainstream journalism on this. 0806
Reposted by LizzyNatasha Devon @natashadevon.bsky.social · 24/09/2026George will be coming on my show this weekend to discuss this very important article. 29436137
Reposted by LizzyAction for ME @actionforme.bsky.social · 24/09/2026A powerful piece from @georgemonbiot.bsky.social in The Guardian on the decades of neglect, dismissal and disbelief experienced by people with ME. Read the full article 👇 www.theguardian.com/commentisfre... www.theguardian.com/commentisfre... 1329
Reposted by LizzyLong Covid Quilter @longcovidquilter.bsky.social · 24/09/2026“there is no effective treatment” but @georgemonbiot.bsky.social words are a lifeline. Being seen is powerful. Thank you for your continued support George. #MEcfs #covidinducedME #longcovid 1185
Reposted by LizzyGeorge Monbiot @georgemonbiot.bsky.social · 24/09/2026With great thanks to the hundreds of people who gave me their testimonies. If I hadn't said "stop" after a few hours, it might have been thousands. The sheer scale of this scandal is hard to get your head around. 2/2 3075693
Reposted by LizzyKristin Meekes @kmeekes.bsky.social · 24/09/2026Please take the time to read this ⬇️ and learn about ME/CFS. The ME scandal is enormously relevant to the fight to collectively address COVID and other airborne pathogens. #GreatestMEdicalScandal 03816
Reposted by LizzyGeorge 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 17925241728
Reposted by LizzyLucibee @lucibee.bsky.social · 22/09/2026NICE guidance NG206 is actually quite explicit. It says: "DO NOT offer people with ME/CFS ... any therapy based on physical activity or exercise as a cure for ME/CFS; ... or that uses fixed incremental [small, ie 10%] increases in physical activity or exercise, eg, graded exercise therapy" 🤦♀️ 23516
Lizzy @hopefullizzy.bsky.social · 22/09/2026As part of my letter to the Bristol ME service, plus George Monbiot discussing ME again i decided to look up the service more… and found this… This is GET. www.nbt.nhs.uk/our-services... 4232
Reposted by LizzyKelly @broadwaybabyto.bsky.social · 22/09/2026Spielberg is demonstrating he understands airborne infection and how to mitigate it! He’s outside at the opening of the Lucas Museum of Narrative Art and he’s wearing a KN95! A good respirator protects you and those around you. Covid is not over and a mask is a great way to stay healthy. 502648561
Lizzy @hopefullizzy.bsky.social · 21/09/2026If this doesn’t paint a heartbreaking but very real picture, of what’s happening, I don’t know what will. As always, thank you George for shining the light on this darkness. 061
Reposted by LizzyKaty B @katybrc.bsky.social · 21/09/2026Thanks so much for this We're hearing about it daily, some of it is being driven by BACME & their refusal to update their dangerous approach Also some hospitalised pwME are still being refused life supporting treatment & being given a psych diagnosis s4me.info/threads/an-o...s4me.infoAn Open Letter to BACME re ME/CFS Guide to Therapy 2025An Open Letter to British Association for Clinicians in ME/CFS in Response to the Document ‘Guide to Therapy’, 2025 Jonathan CW Edwards, Professor in Connective Tissue Medicine* Dr Michelle Bull, Ch... 1151
Reposted by LizzyDom @domsalisbury.bsky.social · 21/09/2026Many of us still don't have any suitable care. No local clinic in some areas, or clinic not suitable for severe ME/CFS patients, e.g., commissioned for mild/moderate only, or too far to travel. Left to rheumatologists etc. who know very little. 0101
Reposted by Lizzycymruwanderer.bsky.social @cymruwanderer.bsky.social · 21/09/2026The volume & content of replies to this, is in itself a testament to how badly #MEcfs is dealt with by Health professionals around the world. I'm also saddened to see the #LightningProcess pop up as being considered by some health services, when it is clearly no more than a money making scam. 0122
Reposted by LizzyLong Covid Advocacy @longcovidadvoc.com · 21/09/2026Amplifying! Excellent news that GM is writing another ME article. If relevant email address below 👇 #pwME #NEISVoid #LongCovid #ChronicIllness 03411
Reposted by LizzyGeorge Monbiot @georgemonbiot.bsky.social · 21/09/2026Intending to write another column about the treatment of #ME/CFS patients this week, pegged to new research findings on the biological basis. My question for sufferers: Are any of you still being offered inappropriate (psych/GET etc) "treatments"? Please email george at monbiot dot info. Thanks. 131711288
Reposted by LizzyAlem Matthees @alemmatthees.bsky.social · 19/09/2026A persuasive statement from Sarah Boothby @swastrosarah.bsky.social about the apparent necessity of legal action such as #JusticeForME to help overcome the decades of inaction/stonewalling and to 'keep the bastards honest' (a phrase used in Australian politics). www.crowdjustice.com/case/justice... 03814
Reposted by LizzyKaty B @katybrc.bsky.social · 17/09/2026It's hard to explain quite how infuriating & heartbreaking it is to see #pwME who were born after I first became ill with #ME, 39 years ago, still having to advocate for themselves, still barely holding onto their lives, still having to fight for their basic rights 0268
Reposted by Lizzywomensartbluesky.bsky.social @womensartbluesky.bsky.social · 17/09/2026Rachel Hayes, contemporary artist who creates textile based largescale outdoor, site specific installations #WomensArt 121914253
Lizzy @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 LizzyCleo👠✨ @ozgib.bsky.social · 15/09/2026You have written this eloquently and with thought. It must have taken a lot of energy you didn't have to spare to create these posts. 💞 Meanwhile on Twitter, same reason, different approach.... 🤣 192
Reposted by LizzyKaren @karenpearny.bsky.social · 15/09/2026Well said Lizzy.. it breaks my heart that you and many others are very severe and have to struggle like this. I am moderate and mainly housebound and try and feel grateful that this is my level at the minute. But I seem to get worse each year so have no clue how I’ll be in a few years too. 242
Lizzy @hopefullizzy.bsky.social · 15/09/20261/4 I had a selection of photos I wanted to post here, but I have decided they are too graphic. They are of the hole in my stomach where my feeding tube sits, the same feeding tube I am too unwell to use. I also have a line into my arm straight into a central vein to my heart. 283
Reposted by Lizzyhijade2madre.bsky.social @hijade2madre.bsky.social · 10/09/2026I’m still laughing at the term “sickfluencer” Heaven forbid a Disabled woman is fashionable, charismatic, engaging, and knows how to prop up a phone camera. 1253
Reposted by LizzyAlt National Park Service @altnps.bsky.social · 13/09/2026Ireland understood the assignment! ✊💚 399163383769
Reposted by LizzyGeorge Monbiot @georgemonbiot.bsky.social · 12/09/2026What's happening here is that as the garfish flee from the bluefin tuna hunting them, they run into the seals waiting in the wings, who drive them into the rocks (right under our feet). 1/3 1238557
Reposted by LizzyTanita Tikaram @tanitatikaram.bsky.social · 12/09/2026What I love about Western democracy is you can bung a political party £ 36 million earned from criminal activity & most media will continue to point at asylum seekers & migrant care workers with families as the barbarians at the gate we need to defend ourselves from 🙄. 3830101003
Reposted by LizzyRobert Saunders @robertsaunders.bsky.social · 12/09/2026A serious democratic society simply cannot allow this. That's £72 million from just two men. (Both, until lately, based overseas). The average UK earner (full-time) would have to work for over 1,800 years to raise that much. It's a nuclear strike on any pretence at the equality of political power 431410562
Lizzy @hopefullizzy.bsky.social · 12/09/2026How can we explain to hospital staff the extreme aftermaths we deal with after even a simple in person appointment? How can we help them understand the effects we endure and for how long afterwards? Because until that is taken into account and understood, nothing can be weighed up benefit vs risk. 0130
Reposted by LizzyT-Rexit @t-rexit.bsky.social · 12/09/2026If this isn’t interfering with Democracy then I don’t know what is? 0132
Reposted by LizzyJust Natting @justnatting.bsky.social · 12/09/2026And some people think this 'Man-of-the-people' will work for them and not the Billionaires who pay him 🙄 1103
Reposted by LizzyPhil Brickell MP @philbrickellmp.bsky.social · 12/09/2026Party financing in this country is out of control The government needs to act via the Representation of the People Bill to restrict spending limits and donations👇🏻 Reform receives second £36m donation in two days as crypto investor matches record www.bbc.co.uk/news/article...bbc.co.ukReform receives second £36m donation in two days as crypto investor matches recordCryptocurrency investor Christopher Harborne says he has matched a donation from Ben Delo announced late on Friday. 5119869
Lizzy @hopefullizzy.bsky.social · 12/09/2026When will it be finally seen that “donations” are not that. There are caveats. What are they expecting in return? It is manipulation and not democracy. @uklabour There needs to be better laws around this. apple.news/A5iEIzykVRxe...apple.newsFarage lands record £36m donation — The TelegraphCryptocurrency billionaire Ben Delo says he wants to ensure Reform has a ‘level playing field’ at the polls 042
Reposted by Lizzyvictoria @vashetc.blacksky.app · 09/09/2026I will be closing this survey this weekend! We're at 585 responses! After survey closes, i will use the website to house dissemination of findings. For example I will post two video presentations I've done on preliminary findings, and a research brief as well. Thank you to all who participated! 0118
Reposted by LizzyLong Covid Kids @longcovidkids.bsky.social · 01/09/2026📄 Our FREE IHCP template is available in Word and PDF to help families and schools start these conversations. It may also be useful elsewhere, although education law, guidance and processes differ. 🔗 www.longcovidkids.org/download-res... Every child deserves a childhood they can participate in. 🧡 093
Reposted by LizzyLong Covid Kids @longcovidkids.bsky.social · 01/09/20263/4 What can an Individual Healthcare Plan include? 💬 What matters to the child 💊 Symptoms & medication 🧩 Support & reasonable adjustments 🔋 Energy & activity management 🛋️ Access to breaks & quiet space 📚 How their health affects education #IHCP #BackToSchool #SEND #Education 171
Reposted by LizzyLong Covid Kids @longcovidkids.bsky.social · 01/09/20261/4 🎒 How will school know what my child needs when their health changes day to day? For children with Long Covid and other prolonged, fluctuating and energy-limiting illnesses, the support they need at school may change too. An Individual Healthcare Plan can help. 🧵 #BackToSchool #LongCovidKids 1125
Reposted by LizzySammie McFarland @sammiemc.bsky.social · 11/03/2026their family’s resources, will be able to access the care and support they need. I can’t change our daughter’s experience. But we can all try to help improve the situation for #children in the future. @longcovidkids.bsky.social has launched a new #Policy & #Parliamentary page, bringing together 1309