iiinova — where your digital self keeps evolving

Reposted by Lizzy

Raider @iwillnotbesilenced.bsky.social · 09/10/2026

HAPPENING NOW: Protestors are marching through the streets of the University of Minnesota in demanding justice for Jane Doe! CORNELL IS CORRUPT! EXPEL THE RAPISTS, LOCK THEM UP!

282250703

Lizzy @hopefullizzy.bsky.social · 08/10/2026

I’m so glad, but yes exactly😔 I mean a break from illness, from symptoms, from planning and recovering and resting and pain and crippling exhaustion. A break from medical admin or procedures or meds. Just to be healthy for a few days. I’m sorry you didn’t get that😔

110

Lizzy @hopefullizzy.bsky.social · 08/10/2026

💔 Absolutely😔 it’s too much to do anything relentlessly I think, let alone this. Thinking of you both x

010

Reposted by Lizzy

sarah boothby @swastrosarah.bsky.social · 07/10/2026

Maeve always wanted a holiday from being unwell. Managing symptoms without medical understanding/support was a full time occupation. She always worked hard but everyone needs a break! With 33 years more life experience, I used to think - going back to that job would make anyone want to quit.

131

Reposted by Lizzy

George Monbiot @georgemonbiot.bsky.social · 08/10/2026

The threats to our resilience are the same as the threats to our democracy: corporate lobbyists shaping policy, with dire consequences for our ability to withstand crises. Burnham seems to want to change this. But is he aware of scale of the task? My column. www.theguardian.com/commentisfre...

theguardian.com

Stockpile food – and wash your hands: is that really how to prepare for environmental catastrophe? | George Monbiot

The UK state is dumping its responsibilities on our doorsteps, while green-lighting policies that lead us closer to crisis, says Guardian columnist George Monbiot

30630248

Reposted by Lizzy

Chronic Illness Humor @chronicillness.bsky.social · 05/10/2026

As shirts & stickers etc www.etsy.com/shop/Chronic... or www.redbubble.com/shop/ap/1789...

Black t-shirt featuring bold white text at the top that reads, “At least it’s not life-threatening” in quotation marks. Below it, yellow text reads, “ME: Thank God it’s just life-ruining”. A red banner running across the bottom of the image lists two shop web addresses: etsy.com/shop/ChronicIllnessTees
and
redbubble.com/people/ChronicillnessT

19318

Lizzy @hopefullizzy.bsky.social · 07/10/2026

Basically this. I wish I could book some annual leave, have a weekend, an evening off even.

3152

Lizzy @hopefullizzy.bsky.social · 07/10/2026

This sounds great… but… how?

100

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

18825

Reposted by Lizzy

Tessa Munt MP 🔶 @tessamunt.bsky.social · 02/10/2026

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.

59434

Reposted by Lizzy

Adam @abrokenbattery.bsky.social · 02/10/2026

“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.

05427

Reposted by Lizzy

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.

89439

Reposted by Lizzy

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

791427322

Lizzy @hopefullizzy.bsky.social · 01/10/2026

100% agree!!! The absolute beauty of the shiny conker, the smoothness of the inside, how it all fits perfectly together, the spiky outer, it’s just magical.

040

Reposted by Lizzy

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

5878042

Reposted by Lizzy

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.

061

Lizzy @hopefullizzy.bsky.social · 29/09/2026

Partly I’m shocked constantly at how cruel this disease is. Your life, body, existence becomes so fragile. Yet you cannot live while you’re alive. Partly I’m shocked that I still see the beauty in tiny things, still share kindness, still give all I have. Shocked that I still blow gently on embers.

191

Lizzy @hopefullizzy.bsky.social · 29/09/2026

Sometimes I feel desperate rage, rage at this whole situation. Rage that we’re all just left, to endure. Disbelief that I still have hope, that I still try so hard, that I still have wants and plans after everything. And still it gets crushed, and I still get surprised by that. I still get shocked.

150

Lizzy @hopefullizzy.bsky.social · 29/09/2026

This is despite trying so, so hard. Despite all sorts of things put in place. Despite all our efforts. Despite having the most supportive family, and constant embers of hope. The pain is horrendous, the exhaustion even worse, there are no words for the level of that. It’s brutal, inhumane. Unfair.

150

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

2186

Reposted by Lizzy

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.

24417

Reposted by Lizzy

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.

0796

Lizzy @hopefullizzy.bsky.social · 24/09/2026

Thank you! Where can we watch/listsn?

020

Reposted by Lizzy

Natasha Devon @natashadevon.bsky.social · 24/09/2026

George will be coming on my show this weekend to discuss this very important article.

29438138

Reposted by Lizzy

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...

1329

Reposted by Lizzy

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

1185

Lizzy @hopefullizzy.bsky.social · 24/09/2026

Thank you so much Rob and for sharing. X

010

Lizzy @hopefullizzy.bsky.social · 24/09/2026

In tears reading this. Thank you for seeing us, hearing, and then doing. Couldn’t be more grateful.

071

Reposted by Lizzy

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

3075993

Reposted by Lizzy

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

03816

Reposted by Lizzy

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

17925401731

Reposted by Lizzy

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" 🤦‍♀️

23516

Lizzy @hopefullizzy.bsky.social · 22/09/2026

That makes sense. This makes it sound like “if you’re not prepared to suffer a bit, then that’s on you”. Frustrating about the other part😔

100

Lizzy @hopefullizzy.bsky.social · 22/09/2026

And that’s whilst still continuing to do the higher level?! Terrifying that this is STILL happening. This was the exact advice we were given when I was 15 by the then regional specialist child and adolescent service. That was 17yrs ago. And I ended up bedridden or needing a wheelchair.

150

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...

4232

Reposted by Lizzy

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.

502655563

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.

061

Lizzy @hopefullizzy.bsky.social · 21/09/2026

This, this is what our local clinic use

000

Reposted by Lizzy

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...

1151

Reposted by Lizzy

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.

0101

Lizzy @hopefullizzy.bsky.social · 21/09/2026

@andrewgiffordphoto.bsky.social same service as you mentioned. I’m really sorry😔

010

Reposted by Lizzy

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.

0122

Lizzy @hopefullizzy.bsky.social · 21/09/2026

Yep! To be fair all they offered me for years up to this was 1-2 15min phonecalls a year to ask how I am, and tell me “you’ve had this a long time now, you know what you’re doing”… My goodness do we need and deserve better!

1140

Reposted by Lizzy

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

03411