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Lizzy

@hopefullizzy.bsky.social
1.7K followers 389 following 316 posts

31y/o creative, with complex health issues🤞🏼ME/CFS biomedical research. Passion for the wild, for kindness, and helping all people have a voice✨ Bristol, UK

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Reposted by Lizzy
ThereForME @thereforme.bsky.social · 01/10/2026
The 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...
George Monbiot is right to draw attention to the “shocking social crisis playing out behind closed doors” for people living with ME. Not only is ME a devastating condition, but too often those affected are failed by the very systems meant to care for them.

The level of political attention the issue has received is nowhere close to the scale of the problem. The government’s strategy on ME, published over a year ago, lacked both substantive funding and outcome targets. Its key action for those affected by the most severe form of ME – “exploring” whether a specialised service could be commissioned – is now delayed until April 2027. We hope that, as a first step, the health and social care select committee will take up this critical issue as a matter of urgency.
Karen Hargrave and Emma Gore-Lloyd
Co-founders, ThereForME charity
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Tessa Munt MP 🔶 @tessamunt.bsky.social · 14h
Thanks @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.
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Adam @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.
Letter
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Adam @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.
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George Monbiot @georgemonbiot.bsky.social · 01/10/2026
Far 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.com
Monster 282kg tuna landed in Brixham is 'heaviest ever' catch
Giant £4,000 Bluefin tuna caught off Devon coast could be heading to Michelin-starred restaurants
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Emma Mitchell @silverpebble2.bsky.social · 01/10/2026
I’m 54 and I honestly think this is as joyful now as it was when I was 4, in 1976:
A ripe Conner/horse chestnut/buckeye in my hand yesterday, ready to peel
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Chronic Illness Humor @chronicillness.bsky.social · 29/09/2026
meme featuring bold white text at the top and bottom over a photo of a young child sitting at a table, completely face down in exhaustion with their face resting directly on top of a sandwich on a white plate.

Top text: "I USED TO EAT TO REFUEL MY ENERGY"

Bottom text: "NEVER IMAGINED HAVING ILLNESS THAT MAKES ME FATIGUED FROM EATING"
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Colleen 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.
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Lizzy @hopefullizzy.bsky.social · 29/09/2026
In 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
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Long 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.uk
LBC Radio - Listen & Watch Live | LBC
Talk radio for the UK, letting you have your say on the big issues of the day, with breaking news and opinion.
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Binita Kane @binitakane.bsky.social · 24/09/2026
Thank you George. This is the absolute reality of what patients are going through - it’s great to see mainstream journalism on this.
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Natasha Devon @natashadevon.bsky.social · 24/09/2026
George will be coming on my show this weekend to discuss this very important article.
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Action for ME @actionforme.bsky.social · 24/09/2026
A 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...
Dark teal Action for ME graphic with orange quotation marks and the Action for ME logo. White text reads: “I’ve spent my working life covering neglected issues. But few are neglected like the devastating chronic condition ME/CFS.” The quote is attributed to George Monbiot, The Guardian.
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Long 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
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George Monbiot @georgemonbiot.bsky.social · 24/09/2026
With 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
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Kristin Meekes @kmeekes.bsky.social · 24/09/2026
Please 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
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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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Lucibee @lucibee.bsky.social · 22/09/2026
NICE 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" 🤦‍♀️
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Lizzy @hopefullizzy.bsky.social · 22/09/2026
As 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...
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Kelly @broadwaybabyto.bsky.social · 22/09/2026
Spielberg 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.
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Lizzy @hopefullizzy.bsky.social · 21/09/2026
If 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.
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Katy B @katybrc.bsky.social · 21/09/2026
Thanks 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.info
An Open Letter to BACME re ME/CFS Guide to Therapy 2025
An 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...
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Dom @domsalisbury.bsky.social · 21/09/2026
Many 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.
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cymruwanderer.bsky.social @cymruwanderer.bsky.social · 21/09/2026
The 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.
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Long Covid Advocacy @longcovidadvoc.com · 21/09/2026
Amplifying! Excellent news that GM is writing another ME article. If relevant email address below 👇 #pwME #NEISVoid #LongCovid #ChronicIllness
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George Monbiot @georgemonbiot.bsky.social · 21/09/2026
Intending 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.
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Alem Matthees @alemmatthees.bsky.social · 19/09/2026
A 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...
"Why we are no further on than before Maeve died makes me feel I have been lied to by everybody I thought I could respect. Unlike the many other families facing what we went through, I now have nothing left to lose. They do have everything to hope for but it is a matter of fact that legal action has been the only remedy for this extremely vulnerable group. Without it, the PACE trial would not have been exposed for the fraud it was [2] [3] [4]. Without their families insisting on the inquests into the deaths of Sophia Mirza [5] and Merryn Crofts[6], the fact that medical mismanagement of ME routinely kills young people would not be known. In the light of so much evidence, the time for crowdfunding legal action has come. Knowing how we tried everything else first, I fully endorse and support #JusticeForME."

[1] Care Act (2014); Mental Capacity Act (2005); Mental Health Act (1983); Equality Act (2010); Human Rights Act (1998)

[2] Wilshire, C., Kindlon, T., Matthees, A., & McGrath, S. (2016) https://doi.org/10.1080/21641846.2017.1259724

[3] Wilshire, C.E., Kindlon, T., Courtney, R., Matthees, A., Tuller, D., Geraghty, K., Levin, B. (2018). https://doi.org/10.1186/s40359-018-0218-3

[4] Valerie Eliot Smith (2015) https://valerieeliotsmith.com/2015/01/20/the-secret-files-unwrapped-part-i-the-importance-of-fair-and-accurate-records/

[5] Brighton Coroners Court, 13 June 2006

[6] Rochdale Coroners Court, 19 May 2018
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Katy B @katybrc.bsky.social · 17/09/2026
It'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
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womensartbluesky.bsky.social @womensartbluesky.bsky.social · 17/09/2026
Rachel Hayes, contemporary artist who creates textile based largescale outdoor, site specific installations #WomensArt
Photo featuring a textile installation with checked and striped translucent material forming an arch in a field as the sun rises or sets
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Lizzy @hopefullizzy.bsky.social · 17/09/2026
I’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.
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Cleo👠✨ @ozgib.bsky.social · 15/09/2026
You 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.... 🤣
Twitter user posting the telegraph article on having a disability became cool writes: To the author who wrote this:
Shut the fuck up, keep shutting the fuck up and never stop shutting the fuck up.
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Karen @karenpearny.bsky.social · 15/09/2026
Well 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.
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Lizzy @hopefullizzy.bsky.social · 15/09/2026
1/4 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.
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hijade2madre.bsky.social @hijade2madre.bsky.social · 10/09/2026
I’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.
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Alt National Park Service @altnps.bsky.social · 13/09/2026
Ireland understood the assignment! ✊💚
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George Monbiot @georgemonbiot.bsky.social · 12/09/2026
What'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
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Tanita Tikaram @tanitatikaram.bsky.social · 12/09/2026
What 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 🙄.
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Robert Saunders @robertsaunders.bsky.social · 12/09/2026
A 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
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Lizzy @hopefullizzy.bsky.social · 12/09/2026
How 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.
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T-Rexit @t-rexit.bsky.social · 12/09/2026
If this isn’t interfering with Democracy then I don’t know what is?
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Just Natting @justnatting.bsky.social · 12/09/2026
And some people think this 'Man-of-the-people' will work for them and not the Billionaires who pay him 🙄
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Phil Brickell MP @philbrickellmp.bsky.social · 12/09/2026
Party 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.uk
Reform receives second £36m donation in two days as crypto investor matches record
Cryptocurrency investor Christopher Harborne says he has matched a donation from Ben Delo announced late on Friday.
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Chronic Illness Humor @chronicillness.bsky.social · 12/09/2026
_thechronicsurvivor

I'LL DIE ON THIS HILL:

Healthy people underestimate how much freedom their bodies give them.
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Lizzy @hopefullizzy.bsky.social · 12/09/2026
When 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.news
Farage lands record £36m donation — The Telegraph
Cryptocurrency billionaire Ben Delo says he wants to ensure Reform has a ‘level playing field’ at the polls
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victoria @vashetc.blacksky.app · 09/09/2026
I 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!
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Long 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. 🧡
Long Covid Kids graphic directing families to download the free Individual Healthcare Plan template from the Long Covid Kids website. The image shows the Long Covid Kids download resources webpage and the web address for the download resources page.
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Long Covid Kids @longcovidkids.bsky.social · 01/09/2026
3/4 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
Long Covid Kids graphic titled ‘What can it include?’ An Individual Healthcare Plan can include: what matters to the child; symptoms and medication; support and reasonable adjustments; energy and activity management; access to breaks and quiet space; what to do if symptoms worsen; and how their condition affects education.
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Long Covid Kids @longcovidkids.bsky.social · 01/09/2026
1/4 🎒 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
Long Covid Kids graphic asking: ‘How will school know what my child needs when their health changes day to day?’ Below: ‘An Individual Healthcare Plan can help.
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Sammie McFarland @sammiemc.bsky.social · 11/03/2026
their 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
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