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Lucy

@wildlifelucy.bsky.social
149 followers 106 following 137 posts

Nature lover🐦, peace seeker, gentle soul. From engineer to psychology graduate. Now more husk than human🐌: Housebound Pw #MECFS #PoTS #CPTSD #Menieres

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Lucy @wildlifelucy.bsky.social · 15/06/2026
@cgatist.bsky.social Hi Chris, I wondered what is the best way to donate so that the funds go directly to your Sequence ME research, please? Thank you!
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Action for ME @actionforme.bsky.social · 27/04/2026
1/2 🚨 People with ME need your help. ME is a devastating and misunderstood disease, with its symptoms affecting an estimated 1.35 million people in the UK. For many, it means not only losing their health, but also their independence and the life they once knew. #pwME #MECFS ⬇️
Image of bed with rumpled sheets in low light with text: “5 things everyone should know about ME.”Graphic with text “ME can affect anybody, at any time. Most people with ME had very full, healthy lives before getting sick.”Alt text: Graphic with text: “ME steals lives. It is profoundly disabling and has one of the worst qualities of life of any disease.”Graphic with text: “1 in 4 people with ME are severely affected, unable to leave the house or their bed.”
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Katy B @katybrc.bsky.social · 27/04/2026
And #ME isn't like other illnesses #ME isn't accurately taught at MedSchool Many Drs don't follow the @nicecomms.bsky.social g'lines for #ME Funding for biomedical research into ME is far lower than other illnesses #ME is widely stigmatised #pwME are dying unnecessarily under @england.nhs.uk care
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Adam @abrokenbattery.bsky.social · 27/04/2026
Watch the full program BBC Lifeline for Action for ME (9 mins) www.bbc.co.uk/iplayer/epis... Lifeline donation page donationportal.co.uk/lifeline/app...
bbc.co.uk
Lifeline - Action for ME
Montell Douglas presents an appeal on behalf of Action for ME, a charity that provides support and advocacy for people of all ages affected by ME.
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Lucy @wildlifelucy.bsky.social · 25/04/2026
Surfacing for a moment; saying hey; sending love, & hoping a bumper show of hedgehogs brightens your day. Meet 8 of the 10 regulars to the feeder atm. Missing is young Brook (who’s just back from a 4 wk stay in hogspital) & Merlin (who’s shy, lol). /1 💙 #pwME #pwLC @warksmammalgroup.bsky.social
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Jenny Rowbory @jennyrowbory.bsky.social · 19/03/2026
I need just 400 people to help save my life! It’s 40 days until I turn 40. NEW BLOG POST: www.jkrowbory.co.uk/2026/03/40-d... 🫶
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Lucy @wildlifelucy.bsky.social · 08/03/2026
Hooray! Little Brook found his way into the feeder last night, having missed it on 2 previous visits. I love how his keen nose assesses the new surroundings & leads him to the prize; his face glistening with rain drops. Cute pointy ears too 🥰 #pwME #pwLC
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Jenny Rowbory @jennyrowbory.bsky.social · 01/03/2026
First update of 2026 (!), new poems and fundraising update: www.jkrowbory.co.uk/2026/03/firs...
jkrowbory.co.uk
First update of 2026, new poems, and fundraising update - Jenny Rowbory
It’s a bit late, but Happy New Year! I have something exciting to share with you today. First though, apologies for the lack of updates; it’s been a hard and
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Lucy @wildlifelucy.bsky.social · 28/02/2026
3 lovely visitors to the feeder last week. Eli, who’s been living in the Patio House for 3 wks, & 2 new arrivals unimaginatively called NewHogC & NewHogD, lol /1 #SpringIsComing 📽️ shows each hog as they enter the feeder & tuck in @warksmammalgroup.bsky.social
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duleyp.bsky.social @duleyp.bsky.social · 23/02/2026
1min of frantic froggie fornication from today. I put a security camera by the pond so I could see what they're up to. What a perv! There are easily 30+ of them at it, and a lot of the heads are just the ♂️ as the poor ♀️ is giving him a piggy back. #wildlifefrommywindow #ukgarden #frogs #spawnsurvey
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Carole Bruce @cabruce.bsky.social · 10/02/2026
‘Let me blunt: everything about how the NHS handles ME is broken. From the perspective of a patient and carer, everything is on fire.’
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Lucy @wildlifelucy.bsky.social · 08/02/2026
For anyone wondering how Twiglet is getting on, she started hibernation in the Buddleja House 24th Dec. But, she was struggling (unable to maintain hibernation & rapidly losing weight). I intervened on Tuesday & she’s now at the rescue being treated for Fluke & Lungworm 🤞🙏💚
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Lucy @wildlifelucy.bsky.social · 08/02/2026
This sweet boy has been in hibernation. Last night, he found his way into the food (protected from slugs & always available for hungry hogs) & moved into the Patio House. I think it might be Eli, a regular from last year. Spring is coming… 🌱 #pwME
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Adam @abrokenbattery.bsky.social · 19/01/2026
My #MECFS scandal explainer video has just passed 200,000 views. Given the level of interest, I’ve written a follow-up article covering key examples I didn’t include, as well as some developments since. medium.com/@abrokenbatt...
medium.com
ME/CFS Scandal Follow up
The ME/CFS scandal goes much deeper than my 27-minute explainer video. That was just an introduction — how for decades patients were told…
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ME/CFS Science @mecfsscience.org · 24/12/2025
1) Moving paper by young ME/CFS researcher Katherine Cheston. She was aware of the great disability it causes but "encountering the reality of this suffering first-hand was still shocking and deeply saddening." She gives examples of patients who do not get appropriate care.
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Lucy @wildlifelucy.bsky.social · 21/12/2025
An early Christmas present from the garden to us all #pwME #pwLC 💙 (too beautiful to keep to myself). A magnificent sparrowhawk. A male, I think, going by this guide ringersdigiguide.ottenby.se/species/acci... Twiglet 🦔 was fast asleep, oblivious to the mighty visitor outside her front door! 💚
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Kate Bradbury @katebradbury.bsky.social · 10/12/2025
I wrote a Christmas gift guide! Who am I? Anyway, there’s lots of crap out there so get the best deal for the wildlife gardener in your life. Merry Christmas 🎄 open.substack.com/pub/katebrad...
open.substack.com
Gifts for wildlife gardeners that really work
(Or, don't buy a hedgehog box that kills hedgehogs. Ok?)
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Lucy @wildlifelucy.bsky.social · 01/12/2025
I’m sure you’ll all be pleased to know that Twiglet is eating well, demolishing a bowl of kitten biscuits most nights, & adding a variety of garden gleanings to her nest. I’m hoping she’ll do a bit of hibernating at some point. Sending love & strength to those who need it 💙 #pwME
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Chris Ponting @cgatist.bsky.social · 16/11/2025
Available to buy now: One Red Leaf at a Time Greetings Cards. All proceeds go to our #MEcfs research @uoe-igc.bsky.social. Thank you @drjogreer.bsky.social & Dr Clare Raynor! theredtreeandme.substack.com/p/one-red-le... #oneredleafatatime
theredtreeandme.substack.com
One Red Leaf at a Time Greetings Cards - Raising funds for research into Myalgic Encephalomyelitis
Since so many of you have asked, greetings cards featuring images from the Red Leaf Creative Collaborative are now available to purchase.
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Lucy @wildlifelucy.bsky.social · 13/09/2025
A slightly different edit to the one I put on Twitter. L➡️R: Robin, LongBoy, the growing hoglet & Honeysuckle. Robin ends up eating the floor biscuits scattered by Honeysuckle, lol. Hoglet leaves, then Honeysuckle, who does a big nervous 💩 & no-one else wants to go in there afterwards 🙈!
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Lucy @wildlifelucy.bsky.social · 11/09/2025
Filling the kettle for my afternoon cuppa & I spotted a little orange butterfly fluttering about the mown meadow. Turned out to be an egg laying Small Copper, making the most of the Common Sorrel. She'd also brought a friend, a female Common Blue. 🧡☕️💙 #Gardening4Wildlife @bcwarwickshire.bsky.social
A female Small Copper butterfly on a leaf of Common Sorrel. She has the end of her abdomen exposed and directed onto the leaf, ready to lay an egg. A worn looking Common Blue butterfly with her wings fully open, soaking up the sunshine. There are very few blue scales left on her browny/orange wings.
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Brian Hughes @bmhughes.bsky.social · 09/09/2025
The Irish health service has initiated a process to develop a clinical guideline for ME (#MyalgicEncephalomyelitis). I am honoured to be part of its Steering Group The process so far has been extremely progressive I am hugely optimistic that a world-leading guideline will be produced #pwME #MECFS
hse.ie
Myalgic Encephalomyelitis (ME) - HSE.ie
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Nicky Proctor @nickyproctor.bsky.social · 08/09/2025
Thinking of Savannah and hoping all clinicians and advocates can work together “at pace” (as government likes to say) for her best interests in accordance with needs of someone with severe ME. 💙
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Lucy @wildlifelucy.bsky.social · 17/08/2025
In my wildest dreams, I don’t think I could ever have imagined that my garden would host a Sedge Warbler for an afternoon. Caught initially on the RING camera whilst I was curled up in bed. It hung around until the evening & I got to see/film it. More garden magic 💚 #WarksBirds
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sarah boothby @swastrosarah.bsky.social · 10/08/2025
Thanks to Emily Dugan and the Sunday Times for exposing this aspect of how Maeve died from ME. A Devon County Council cover up. Maeve was taking them to judical review, dying in the attempt. Devon County Council may have learnt nothing from the inquest. I have learnt a lot about them. 1/4
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Adam @abrokenbattery.bsky.social · 10/08/2025
Full Article - The Times As my daughter died of ME, the state met in secret to blame me Maeve Boothby O’Neill’s mother had no idea she was being accused in private of causing or fabricating the illness that would take her life aged 27 archive.ph/2025.08.09-2...
archive.ph
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Naomi Harvey PhD @naomidharvey.bsky.social · 07/08/2025
Huge thank you to Chris Ponting and the @decodemestudy.bsky.social team for all their work on this project, and the work still to come. These results are a great foundation and provide a lot of validation for patients across the world 🩵
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DecodeME @decodemestudy.bsky.social · 06/08/2025
Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population. - Summary of our results: shorturl.at/pgsjk Check out our full preprint paper: shorturl.at/VwN3s
DecodeME: The Results announcement post. The graphic has a blue background with a DNA helix. In the centre of the graphic it says ‘We have released our initial DNA results! We have discovered that your genes contribute to your chances of developing ME/CFS.’ At the bottom left of the graphic is an image of a research paper.
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Paula Knight 🎨✒️♿ @paulaknight.bsky.social · 22/07/2025
A selection of disability focused designs available in my Redbubble shop. I rarely see bedridden people represented in iconography and illustration around disability. www.redbubble.com/i/t-shirt/Va... #Disability #DisabledArtists #illustration #TeeDesign
Valid disabled person in bed icon white on blue background with the word valid in red beneathTotal badass/ bedass. Disabled person in bed icon white on a black background with the letter e in red. Red disabled person in bed figure with no to cuts welfare not welfare on a flag above. Red disabled person figure in a hospital bed with the disability Pride flag above and the words Nothing about us without all of us
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John Peters @johnthejack.bsky.social · 22/07/2025
Someone recently asked me to do a short piece on my experience of #MEcfs #c4news
Text:


Personal experience of ME

ME strips everything from you, leaving you with a shrivelled, dull, sterile, joyless existence. After 40 years, increasingly I see it as a long, slow death. 

Everything is taken: every dream, every ambition, every friend, even in some cases your family. You lose your dignity. You lose your very identity.

You see life go on without you. You feel and live a bleak, horrible aloneness.

Made an unreliable witness to your own body by the dominant behavioural model, the isolation is all the greater for seeing those meant to care for you hold you responsible for your own misery.

You are never where you want to be, you are never doing what you want to do and you are never the person you really are.

Your existence is without everything: no family, no intimacy, no work, no sport, no art, no parties, no anniversaries, no birthdays, no coffee breaks, no moments, no shared meal since 1991.

Time takes on a different meaning. You will do something that takes ten minutes the next time you feel up to it, and manage it three months later.Text:

The days pass slowly, as former hostage John McCarthy said, but the years pass quickly.

When I was most severely ill, I lay in bed in a darkened room for hour after hour for the best part of five years.

The eclipse was darkness outside to match the darkness inside. The millennium was just another night.

Each day is the same, but as the illness ebbs and flows and rages and quietens, each moment is different. Always, always, always, the illness is there.

Forty years dying and it’s not over yet. I hate my life. 

I just wish I could get better.
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Lucy @wildlifelucy.bsky.social · 19/07/2025
When I became housebound, I kinda thought I'd never see another Small Blue butterfly. They rely on Kidney Vetch &, although I scattered seed, it never germinated. I cannot describe how gobsmacked I am that one has just turned up in my garden. The thrill is going to kill me 🤪
The upper wing view of a Small Blue Butterly feeding on Bird's Foot Trefoil. The wing colour is a dark, browny blue, with a white fringe around the edgeThe under wing view of a Small Blue butterfly on Bird's Foot Trefoil. It's a pale blue with distinctive small spot markings
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Jenny Rowbory @jennyrowbory.bsky.social · 18/07/2025
Even if you don’t usually like poetry, I think that you might find something here to enjoy. Plus it’s raising money for urgently needed surgery. Win win!
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duleyp.bsky.social @duleyp.bsky.social · 03/07/2025
📰Al Fresco Naughtiness Goes Digital📰 (see what I did there?!). This Buff Tailed #Bumblebee pair were going at it on the pavement outside a school and the♀️looked exhausted. So I rescued them from being trampled by the kids, and moved them onto an echinacea. #ukwildlife
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duleyp.bsky.social @duleyp.bsky.social · 01/07/2025
This is a short clip of the #leafcutterbee taken on my phone from one of her visits. #gardenwildlife #ukwildlife #insect #solitarybee #invertebrates #wildlifefrommywindow
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ThereForME @thereforme.bsky.social · 30/06/2025
Thank you @tessamunt.bsky.social! 💪 👏👏👏👏
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Lucy @wildlifelucy.bsky.social · 29/06/2025
Sunday vibes: the calm, soothing sight of 3 happy hogs 🥰
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Lucy @wildlifelucy.bsky.social · 27/06/2025
🎶 Sea Holly brings all the bees to the yard 🎶 I’ve been amazed at how popular the Sea Holly (Eryngium × zabelii 'Jos Eijking’) is with the bees. It’s been covered in them. And then, a smart Six Spot Burnet moth joined in this week. #Gardening4Wildlife #MothsMatter
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Lucy @wildlifelucy.bsky.social · 23/06/2025
Something beautiful to end the day 🩷. An Elephant Hawkmoth in my tiny little meadow area. I accidentally disturbed it when I went to fill up the birdbath just now. Beautiful creatures of the night... #Gardening4Wildlife #MothsMatter @bcwarwickshire.bsky.social
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Lucy @wildlifelucy.bsky.social · 22/06/2025
A very special book. If I’m ever lucky enough to see another hare, it will be through new eyes. Thank you so much for sharing Hare with us @chloedalton.bsky.social #NoSpoilers
A paperback book entitled "Raising Hare" by Chloe Dalton. On the front cover is a beautiful drawing of a hare.
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Lucy @wildlifelucy.bsky.social · 21/06/2025
Look who came to visit last night. First baby hedgehog of the year. I never take it for granted. They found the food and fresh water and had a good sniff around. #Gardening4Wildlife @warksmammalgroup.bsky.social
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Carole Bruce @cabruce.bsky.social · 20/06/2025
‘The largest ever biological study of #ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) has identified consistent blood differences associated with chronic inflammation, insulin resistance, and liver disease.’ University of Edinburgh
ed.ac.uk
Scale of how ME/CFS affects blood revealed
People with ME/CFS have significant differences in their blood compared with healthy individuals, a new study reveals, suggesting a path towards more reliable diagnosis of the long-term debilitating i...
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Lucy @wildlifelucy.bsky.social · 18/06/2025
Behold, the beautiful Sea Holly! Its first year in flower. It's even better than I hoped, with that striking blue colouring. I'm looking forward to seeing how to changes through summer and autumn. #Gardening4Wildlife
The Sea Holly as seen from above, showing the deep blue, pointed, star-shaped flowers with seed-head centres.The Sea Holly in the flowerbed, with chicory, ragwort and bird's-foot-trefoil & the yellow haze of lady's bedstraw in the wildflower meadow areas beyond.
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Lucy @wildlifelucy.bsky.social · 17/06/2025
Had 11 hedgehogs to the feeder last night. The highest count this year. Holly is tucked up in the Patio House today. And, a couple of hogs had a bit of a barney inside the feeder and left me the gift of prickles 🥰 @warksmammalgroup.bsky.social
6 hedgehog prickles lined up on white paper.All 17 of the hedgehog prickles left on the floor of the feeder, lined up on white paper
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Lucy @wildlifelucy.bsky.social · 07/06/2025
I was going to post some hedgehogs today but then when I went downstairs for my late lunch, the sparrows were having a party in the wildflowers. Thought you might like to see it. I think they’re finding aphids & other little insects 💚 #Gardening4Wildlife
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Lucy @wildlifelucy.bsky.social · 29/05/2025
It’s fledging day 🐦 & ‘I’m a bit hot in my nest & fancy a scratch’ day 🦔. Mrs blackbird built a nest on my garden wall, just above the Patio House, beautifully hidden/shaded by overhanging laurel. The chicks have fledged this morning. Bonus cameo at the end 🦔💚 @bbcspringwatch.bsky.social
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Matt Lazell-Fairman @mfairma.bsky.social · 08/04/2025
It’s been five years since John Prine died of COVID-19. If you’re so inclined (and able — it’s long), here’s an essay I wrote about how his songs helped me accept a life with the debilitating, deeply marginalized chronic illness ME/CFS. 1/3
m-lazell-fairman.medium.com
How Singer-Songwriter John Prine Helped Me Accept A Life of Illness
It’s been a year since Prine died of COVID-19. His death made me reflect on what it means to be sick and how his songs helped me learn to…
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Helen Morgan MP @helenmorganlibdem.bsky.social · 19/02/2025
My piece in today's @thetimes.com. Here in North Shropshire alone many people are crying out for more support as they suffer from ME. The Government must do more.
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George Monbiot @georgemonbiot.bsky.social · 29/01/2025
This is deeply shocking and disturbing, the opposite of scientific good practice. As I see it, a group of diehards promoting a discredited treatment (exercise "therapy" for ME/CFS patients) are seeking to stifle medical progress - to protect their reputations. And Cochrane has kowtowed to them. 🧵
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Kate Bradbury @katebradbury.bsky.social · 28/01/2025
New Substack! On how to do winter jobs without harming wildlife: open.substack.com/pub/katebrad...
open.substack.com
How to do winter jobs without harming wildlife
Leaving our gardens and other growing spaces alone in winter is often impractical, so how do we get stuff done without causing harm?
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