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Penny

@theoldlostroad.bsky.social
550 followers 840 following 90 posts

Severe #MECFS for a very long time. Loves nature poetry children hope. Hates arrogance dishonesty injustice.

PostsRepliesMedia
Reposted by Penny
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
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Rook Irwin Sweeney @ris-law.bsky.social · 01/09/2025
Our client, supported by #JusticeforME, is crowdfunding for legal advice with the aim of ensuring that specialist health services needed by everyone living with ME/cfs are made available – find out more here: www.crowdjustice.com/case/justice... #MyalgicEncephalomyelitis @swastrosarah.bsky.social
A painting of a woman lying in a bed with a landscape of hills in the background.
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Tom Kindlon @tomkindlon.bsky.social · 31/08/2025
A BBC podcast titled "Access All: Disability News & Mental Health" asks if the DNA of people with ME is different. They interview Prof Chris Ponting @cgatist.bsky.social & participant Laura Boyles about the DecodeME study. Starts at 22.12 minutes www.bbc.com/audio/play/p... #MEcfs #PwME #CFS
bbc.com
BBC Audio | Access All: Disability News and Mental Health | Is the DNA of people with ME different?
And high heels make some disabled people walk better
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Tom Kindlon @tomkindlon.bsky.social · 29/08/2025
🧵 "ME/CFS: The mysterious illness trapping people in their bodies" Journalist Zoe Madden-Smith from Re: News @1newsnz.nzcow.com in New Zealand looks into the controversy about ME/CFS in a short but informative documentary youtu.be/DsOAq6cs564 #ChronicFatigueSyndrome #MEcfs #CFS #PwME 1/
Photo of a woman in a hospital bed with an eye mask on and heavy noise defenders with the caption "it stole my life"
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George Monbiot @georgemonbiot.bsky.social · 29/08/2025
2. We’ve also discovered that there was a very high representation of suspected domestic abusers among those rioting against asylum seekers last year. A small number of truly horrible men are responsible for all kinds of misery. www.theguardian.com/society/2025...
theguardian.com
Two in five arrested for last summer’s UK riots had been reported for domestic abuse
Police data indicates overlaps between public violent disorder and domestic violence and abuse
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Mads @blueforpwme.bsky.social · 31/08/2025
Link to donate for LEGAL ACTION : #pwME - Currently at £4754 11:15 31/08/2025 crowdjustice.com/case/justice... #Justice #JusticeForME #MyalgicEncephalomyelitis PLEASE SHARE IF YOU CARE! (If you haven’t already) Thank you 💙
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Zack Polanski @zackpolanski.bsky.social · 23/07/2025
⏳Final week to sign up to the Green Party. 🗳️ Vote for Bold Leadership on August 1st.
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Jeremy Corbyn @jeremycorbyn.bsky.social · 24/07/2025
It's time for a new kind of political party - one that belongs to you. Sign up at yourparty.uk.
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Tessa Munt MP 🔶 @tessamunt.bsky.social · 15/07/2025
June 30 + 10… and with still no sign of the ME Delivery Plan, last Thursday I again asked the Leader of the House, @LucyMPowell, if she could help bring an end to the delay which is so disrespectful for #pwME. I’m grateful for her acknowledgement and commitment to follow up. 👍🏾
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ThereForME @thereforme.bsky.social · 15/07/2025
Today we’ve got a visibility themed update, in honour of our @oonaghcousins.bsky.social new job. Read today’s #ThereForME update to find out how many times we can fit the word “visible” into a blog. Link in next post 👇
Campaign update 23: getting visible. Where oh where is the delivery plan? NIHR funding. Long Covid visibility at the V&A. New #ThereForME substack post
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ThereForME @thereforme.bsky.social · 12/03/2025
We’ve been so moved seeing the #FundThePlan videos over the past few weeks. Now, we want to get our call to #FundThePlan out far and wide. Here’s a little something we’ve put together for the campaign. We’d love your help making some noise with it 🙏
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Frances Ryan @francesryan.bsky.social · 16/07/2025
Another petty counterproductive move from Starmer. Punishing MPs who stood against a widely unpopular policy won’t endear him to the public or improve discipline in the party. It just makes him look like he hasn’t learnt a thing - morally or practically - from the disability cuts. Because he hasn’t.
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Paul Lewis @paullewismoney.bsky.social · 17/07/2025
Carers need more help, govt will be told as @resfoundation shows how little they get bit.ly/3GF0cDl Before being forced to change, the govt planned to take carers allowance away from 50,000 through changes to PIP. They are paid a pittance for £184bn worth of care
bit.ly
Ministers urged to overhaul and raise carer’s allowance
Resolution Foundation says unpaid carers on low incomes pay ‘very heavy price’ for looking after loved ones
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Mirror Politics @politics.mirror.co.uk · 17/07/2025
More than three-quarters of children’s doctors say poverty-related illness has increased over the last two years, as they warned of an “unbearable level” of hardship among kids.
mirror.co.uk
Children's doctors slam 'unbearable' poverty - as students make breakfast plea
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Zack Polanski @zackpolanski.bsky.social · 16/07/2025
Speak out for Disabled people? Keir Starmer will suspend you. Labour once again showing where their values lie. Join.greenparty.org.uk
join.greenparty.org.uk
Join the Green Party
Join the Green Party from just £6 a year. Become a member today - join the only party with the policies needed to tackle the climate crisis.
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Prem Sikka @premnsikka.bsky.social · 16/07/2025
Starmer suspends Labour MPs for challenging disability benefit cuts. Others targeted with petty sanctions. These people ought to be celebrated for forcing Starmer to develop better policies. Silencing of critics results in poorer policies.
bbc.co.uk
Keir Starmer suspends Labour MPs for breaching party discipline
Neil Duncan-Jordan, Brian Leishman, Chris Hinchliff and Rachael Maskell all voted against welfare reforms.
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George Monbiot @georgemonbiot.bsky.social · 15/07/2025
I've read many condemnations of Keir Starmer, but none as damning as this.
Trump says he ‘really likes Starmer, even though he’s a liberal’
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Bell Ribeiro-Addy MP @bellribeiroaddy.bsky.social · 16/07/2025
I've received a number of enquiries about the decision to remove me as a trade envoy. I particularly want to thank the UK-Ghanaian diaspora for all their support in the role, which, like their jollof, is unmatched. My statement on the issue 👇🏾
Full text of Bell's statement: https://bellribeiroaddy.com/statement-on-my-removal-as-uk-trade-envoy-to-ghana/Full text of Bell's statement: https://bellribeiroaddy.com/statement-on-my-removal-as-uk-trade-envoy-to-ghana/
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Brian Leishman MP @brianleishmanmp.bsky.social · 17/07/2025
I want to take this opportunity to thank everyone who has sent their solidarity in light of yesterday’s news of having the Labour whip temporarily suspended. Your support is incredible and it is the honour of my life to serve as the MP for Alloa & Grangemouth ❤️✊
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Chris_MJ @chrismj199.bsky.social · 16/07/2025
how many days since he announced he was going to listen more to mps?
A screenshot of the headline of an article on the Guardian website. The headline reads: ‘Keir Starmer removes Labour whip from four “persistent rebel” MPs’. The subheadline reads: ‘Rachael Maskell, Neil Duncan-Jordan, Brian Leishman and Chris Hinchliff pushed out and three trade envoys lose roles’. The headline is accompanied by a photograph of Keir Starmer smiling and walking out of No. 10 Downing Street, carrying some folders.
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sangitamyska.bsky.social @sangitamyska.bsky.social · 28/05/2025
🚨 A statement: Over the past year James O’Brien & others have made claims about my departure from LBC. I’m restricted in what I can share with you but hope the statement below will draw a line under the matter. My focus is on moving forward. I am grateful for your continued support, Sangita
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Chris Ponting @cgatist.bsky.social · 22/03/2025
Closure of Columbia's ME/CFS Research Center will slow understanding of this terrible disease & progress towards effective therapies. This decision disproportionately affects women & some of the most vulnerable in society. It would've been a privilege to work alongside Ian Lipkin. #pwME #ME #CFS
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#MEAction Network @meactnet.bsky.social · 20/03/2025
Trump administration has terminated funding for the Center for Solutions for ME/CFS at Columbia University—one of the nation’s leading research centers for ME/CFS, led by Dr. Ian Lipkin. #MEAction plans to fight back!
Image of red square with wording that says, "Trump Admin Cuts Funding for ME/CFS Collaborative Research Center at Columbia University."
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GC Gi @caldeiragiselle.bsky.social · 28/03/2025
Saskia Boelsums is a Dutch visual artist who turns landscape photography into pure visual poetry. Her images evoke the softness and depth of impressionist paintings, though they are captured with a camera. With a refined aesthetic and masterful digital editing, Boelsums creates ✒️
Photograph of a blooming tree, its branches covered in small white flowers under a soft blue sky. The scene resembles an impressionist painting, with delicate tones and a diffused texture, characteristic of Saskia Boelsums’ work. The surrounding field is flat, with low vegetation and gentle late-afternoon light.
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GJdop @gjdop.bsky.social · 24/03/2025
Does anybody else think that Rachel Reeves needs psychiatric help?
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Yorkshire Pud @theyorkshirepud.bsky.social · 26/03/2025
I feel physically ill. I just can’t cope with anymore. Rachel Reeves and Labour - you are an absolute disgrace. I can’t support my son alone when his disability benefits are pulled from him. #SpringStatement #Reeves #Labour
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George Monbiot @georgemonbiot.bsky.social · 26/03/2025
As Rachel Reeves follows the deathly neoliberal script to the letter, here is our latest video, explaining the dire state of this government and demanding better. Please do watch.
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edeath @edithcharles.bsky.social · 26/03/2025
Reeves said PIP is "a waste of their potential and a waste of their futures.” PIP is a measure that keeps more disabled people IN WORK, without it many will drop out of the workforce. This REDUCES the economic activity the country needs. Reeves is lying by pretending it's somehow the opposite.
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Oliver @oliver48.bsky.social · 26/03/2025
GCSE economics lesson for Rachel Reeves via @pileusmedia.bsky.social
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Alison Twycross RN PhD @alitwy.bsky.social · 21/03/2025
Have you signed this petition yet? petition.parliament.uk/petitions/70... #SafeAir4All @shh-uk.bsky.social
petition.parliament.uk
Petition: Introduce new air quality and PPE rules for health and social care settings
We want the Government to set new rules on air quality and infection control in health and social care settings, to prevent and control airborne infections, with new ventilation and filtration require...
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traceydooley.bsky.social @traceydooley.bsky.social · 22/03/2025
@ashleydaltonmp.bsky.social @rthonwesstreeting.bsky.social @wesstreeting-mp.bsky.social @thereforme.bsky.social #FundThePlan #ThereForME
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The Daily Tism @thedailytism.com · 22/03/2025
“It’s time they stopped being a drain on our society, with their ‘reasonable adjustments’ and ‘payments that give them some independence to engage with society’, and instead started being chased through the streets by me and my big net.”
thedailytism.com
Wes Streeting pledges to tackle mental health crisis with “a net and a gun”
Speaking at a press conference earlier today, the health secretary Wes Streeting announced his radical new plan to reduce government spending. Streeting, described by late journalist Dawn Foster as a ...
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Zarah Sultana MP @zarahsultana.bsky.social · 22/03/2025
UK billionaires added £182,000,000,000 to their wealth last year. That’s £35,000,000 every single day. Their combined wealth is £795,361,000,000. So don't let anyone tell you austerity is a “necessity”. There’s more than enough wealth to fund our NHS, public services & welfare.
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BladeoftheSun @bladeofthes.bsky.social · 22/03/2025
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George Monbiot @georgemonbiot.bsky.social · 22/03/2025
I don't often ask people to write to their MPs. But I think they might listen to you on this, as it's so jaw-droppingly awful, and they're almost certainly unaware of it. www.theguardian.com/commentisfre... Please also write to the Environment Secretary: steve.reed.mp@parliament.uk Thanks.
theguardian.com
What’s in the millions of tonnes of sludge spread on to UK farmland? Toxic waste – and ministers don’t care | George Monbiot
Water companies let waste disposers, for cash, dump their loads into sewage farms. When it is recklessly used as fertiliser, we are all at risk, says Guardian columnist George Monbiot
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Peter Stefanovic @peterstefanovic.bsky.social · 22/03/2025
Brexit a key factor in worst UK medicine shortages in four years, report says www.theguardian.com/society/2025...
theguardian.com
Brexit a key factor in worst UK medicine shortages in four years, report says
Nuffield Trust says supply chains have shifted, with medicines for epilepsy and cystic fibrosis among those now scarce
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Caroline Lucas @carolinelucas.bsky.social · 20/03/2025
How many times do we have to say it? *Austerity doesn’t work*. More cuts to public spending is economically illiterate and morally indefensible - people didn’t vote Labour to get more Tory austerity. FFS tax extreme wealth, don’t slash public services @patmillsuk.bsky.social
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The Guardian @theguardian.com · 20/03/2025
Covid changed our lives – and not for the better | Letters
theguardian.com
Covid changed our lives – and not for the better | Letters
Letters: Readers on the impact of the pandemic five years on
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Carole Bruce @cabruce.bsky.social · 20/03/2025
‘Dr Gilbert said he felt "ignored" by the last government and "abandoned" by the current one.’ #LongCovid #ME #Doctor @alexisme.bsky.social
bbc.co.uk
Leeds doctor still 'bedbound' three years after Covid infection
Dr Alexis Gilbert was working in public health when he fell ill and now struggles with daily tasks.
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BookwormVaught - Dr Anna Vaught @bookwormvaught.bsky.social · 18/03/2025
Projected Government cuts, particularly to PIP. One thing not even seen mentioned by them: it will drive up the number of unpaid carers, remove people from the workforce and place strain on resources because long-term unpaid care is intersectional with poor health and with poverty. And on PIP -
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Adam @abrokenbattery.bsky.social · 20/03/2025
Full segment (3 mins) BBC Look North Dr Alexis Gilbert who has #LongCovid and has also been diagnosed with #MECFS youtu.be/M4e-6w16On0?... BBC article www.bbc.co.uk/news/article...
youtu.be
BBC Look North - Long COVID ME/CFS
YouTube video by Broken Battery
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Katy B @katybrc.bsky.social · 20/03/2025
Any PEM/PESE can potentially lead to a dramatic deterioration which is permanent There's no treatment for it & every #pwME is constantly doing their best to manage this Until this is understood by every Dr & HCP #pwME are not safe when under their care #ME #MEcfs #LongCovid
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Stephen MIA @stephenmia.bsky.social · 19/03/2025
The Government say that those ‘genuinely in need’ will still be helped. Well let me paint a picture for you. As a former Radiographer I became disabled in 2021 after a Covid Vaccine I took to help stop the spread of Covid to vulnerable patients. I am now in bed 24/7. I am untableto watch tv
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Disability Rights UK @disrightsuk.bsky.social · 20/03/2025
Our current punitive welfare system has led to the deaths of hundreds of Disabled people at the hands of benefits cuts. The Government not only refuses to fix this - but is placing us at risk of further punishment and surveillance. Let us be clear: this is a political choice.
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Adam @abrokenbattery.bsky.social · 20/03/2025
Clip from BBC Look North - Dr Alexis Gilbert (alexisme.bsky.social) who is almost entirely bed bound with #LongCovid and has been diagnosed with #MECFS feels "abandoned by the government... Its taken away all my dignity, all my joy its been devastating".
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Quin Rey @quinreystudios.com · 20/03/2025
Find beauty somewhere today. Outside or within, give yourself the gift of composure. These moments of clarity and calm will enhance your patience and wisdom. Don’t feel guilty for walking away from the stress. Taking care of yourself is an act of resistance. I’m so glad you exist. 🫶🏼
A rocky shore with oceans crystal tide splashing in. The sky is blue with low white clouds and mountains are in the background.
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Tom Parsons @tomparsons.bsky.social · 20/03/2025
Every day I pass in this bed is a day that was robbed from me. No-one could have stopped me getting ME/CFS. But there was no need for me to get worse. There was no need for doctors to manipulate me into destroying the quiet little life I had built for myself in the three years I was undiagnosed
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BBC Newsnight @bbcnewsnight.bsky.social · 19/03/2025
“Could you live on £70 a week?” “Absolutely not” “So why do you expect young people to?” “We won't” @vicderbyshire.bsky.social challenges DWP minister Torsten Bell on benefits reform. #Newsnight
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Frances Ryan @francesryan.bsky.social · 20/03/2025
On top of this, it is feared plans to scrap the WCA and “streamline” disability benefits will also have a severe knock-on effect. Restricting eligibility to Pip *while* making it the only way to access UC health payments will see some disabled people’s incomes hit twice over.
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