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Sarah H

@sazzi91.bsky.social
402 followers 1K following 12 posts

creativity, baking👩‍🍳 tv 💻 nature 🌷 chronically ill; ME/CFS since 2002 🐌 🇪🇺 IG: @sazzi_crafts #MillionsMissing

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Reposted by Sarah H
Tessa Munt MP 🔶 @tessamunt.bsky.social · 24/09/2026
Thank you so much, George! Your conclusion speaks volumes, reflecting so much that I hear from #pwME.
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Frances Ryan @francesryan.bsky.social · 24/09/2026
As I lay in bed with PEM, always grateful to my colleague @georgemonbiot.bsky.social for helping bring M.E. into mainstream attention. The way people with M.E. are ignored and actively harmed by medics who have been trusted to help them is a hidden scandal. 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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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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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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George Monbiot @georgemonbiot.bsky.social · 21/09/2026
Thanks so much everyone for a massive response. I've now had as many emails as I can cope with, so no more please - thank you. They paint a really grim and heatbreaking picture. The neglect and abuse of patients goes on and on. I hope to try to do the issue justice. #ME/CFS
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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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Lizzy @hopefullizzy.bsky.social · 31/08/2026
Clean hair is just the best feeling!!! If you’ve never had to go longer than 2weeks without having your hair washed, I can only explain to you the soreness, horrendous itch, the smell of grease, and the build up of dead skin (particularly if it’s been 4-8weeks+ so to feel it clean again is HUGE 🙌🏼
Exhausted but clean hair and scalp is the best feeling! Clean, dry hair! Laying across bed, with head over commode hole, bucket underneath, so my head is supported and mum can wash it through the hole. Kylee sheets are essential for absorbing water spills!
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Lizzy @hopefullizzy.bsky.social · 26/08/2026
The next APPG (All Party Parliamentary Group) for M.E is on 2nd September. If you haven’t already, it’s worth asking your MP to attend.
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Lizzy @hopefullizzy.bsky.social · 20/08/2026
www.actionforme.org.uk/wp-content/u... One of the most necessary and accurate (to my and many others’ experiences) reports I’ve ever seen. I wish all friends, family and certainly medical teams would read it. 1/7
actionforme.org.uk
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The Sick Times @thesicktimes.org · 27/07/2026
"The quiet normalization of COVID-19 in our society has come at the great expense of school-age children and adolescents." thesicktimes.org/2026/07/24/t...
ID: Collage graphic with two dark silhouettes, one of a young man and one of a young woman, against a background photo of a school hallway, with linoleum walls and red lockers on either side of the image. The text reads, “The Sick Times. The (sick) kids aren’t alright: Observations from a teacher with Long COVID. We must help students by addressing Long COVID and advocating for clean air in schools. By Flynn Lovelace.” If we want kids to have the opportunity to learn, to grow, to be, then we must do what we can to keep them alive and well. To quote Madeline Lane-McKinley from her book Solidarity with Children, “We cannot allow ourselves or each other to surrender the future.”

- Flynn Lovelace, The (sick) kids aren’t alright: Observations from a teacher with Long COVID
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Emma Mitchell @silverpebble2.bsky.social · 27/07/2026
I learned a lovely thing yesterday: a group of brittle stars (either fossilised or dancing very slowly in a Devon rockpool) is called …a galaxy:
A group of fossilised brittle stars
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Germaine Hypher - Crafting A Path Through Illness @germainehypher.bsky.social · 30/06/2026
This project, by an anonymous ME patient, uses the voices of people with Severe ME for everyone with ME who often has to make themselves worse just trying to access healthcare. nicecollages.portfoliobox.net/the-collages #mecfs #ME/CFS #chronicillness #invisibleillness #art #collage #CraftSky
nicecollages.portfoliobox.net
NICE Collages for ME-informed Healthcare
A creative project raising the voices of people with Severe ME, highlighting that the NHS has not implemented NICE Guidance of 2021 (NG206)
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 29/05/2026
Me Time is a series of online activities for carers in Wales. June's activities include: Book Club (1st); Lineart Workshop (3rd); Mindfulness (9th); Finding Support (11th); Alzheimer's society (16th) tinyurl.com/36seh36y
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Lizzy @hopefullizzy.bsky.social · 02/06/2026
Can’t believe it’s a whole year ago that the #Mirrorbox visited its first location,Troopers Hill in Bristol. What a humbling experience to have had so many people turn out to stand or sit in the Mirrorbox, 1 by 1, to hear my message, my voice. Both people I’ve known a long time, & total strangers.
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Dr Nicola Clague-Baker @claguenjc36.bsky.social · 12/05/2026
It took 7 years but we have managed to publish an article in the physiotherapy frontline magazine "Do no harm". Thank you to the @thecsp for publishing. Over 65,000 UK physios will see this important message about #pwme @physiosforme.bsky.social
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Lizzy @hopefullizzy.bsky.social · 12/05/2026
As always, I will repost this today #MEawarenessday #MECFS #millionsmissing The irony is, that in comparison to now, I was well when I wrote this. And yet in comparison to healthy, I was so so far from being ‘well.’ inews.co.uk/news/health/...
inews.co.uk
Living with chronic fatigue syndrome: 'I used to climb mountains, now I need a stair lift'
Lizzy Horn was enjoying being a teenager until she was struck down with an illness she has never recovered from. She tells Paul Gallagher how daily life has become such a struggle
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Lucibee @lucibee.bsky.social · 03/03/2026
I'm going to do a thread 🧵 here on the questions asked in UK Parliament about the #MEDeliveryPlan specifically and ME in general since November 2025. Due to the vagaries of threads in BSky 🙄, this might not work as planned, but let's give it a go...
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Paul Hennell @hennell.bsky.social · 03/03/2026
With the sad news that Richard Osman is leaving Richard Osman's House of Games I've been coming up with replacement shows #replacingRichard
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Adam @abrokenbattery.bsky.social · 17/02/2026
TW: Update on Savannah via GoFundMe: Donations have now funded legal action. Sonya Chowdhury (CEO Action for ME) has briefed a solicitor as well as Savannah’s MP. I’ve donated again. Also includes a diary style update of her experience in hospital. www.gofundme.com/f/severemerg...
gofundme.com
Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce
Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital
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Lizzy @hopefullizzy.bsky.social · 09/02/2026
My consultants are talking with my MP today about #SevereME provision etc because many of our situations are so desperate, there is nothing on offer, no guidance for them, no treatments for us. @wesstreeting It HAS to change. Funding research, and funding a specialist service will save lives.
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Lizzy @hopefullizzy.bsky.social · 07/02/2026
Ok so, update after an incredibly tough week (& months!) which I’m not ready to go into. IV fluids have been reinstated. My consultant(s) have been really good this week, particularly one, who came in from home during sudden personal leave to see me with mum, with another consultant.
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Lizzy @hopefullizzy.bsky.social · 10/01/2026
I saw the moon this morning. Have been in hospital 7weeks now almost. It’s tough. I am forever amazed by my courage, my bravery, but it takes a lot. 47days since I breathed outside air from a window or door. 7weeks since I felt the cold on my face. Thinking of you all. Keep going.
Pale blue sky, with a crisp half moon
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Paul Hennell @hennell.bsky.social · 11/10/2025
In case you're wondering why I'm posting monkeys - I'm taking part in Orangetober. Whenever I see something orange this October, I'm taking a photo and asking you to consider donating to Jenny's urgent neurosurgeries. gofundme.com/savejenny
gofundme.com
Donate to Jenny Can’t Be Left Like This, organized by Jenny Rowbory
We never expected to be here again, asking for help. The craniocervical fusion surgery… Jenny Rowbory needs your support for Jenny Can’t Be Left Like This
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Paul Hennell @hennell.bsky.social · 11/10/2025
I've been terrible at spotting orange things for @jennyrowbory.bsky.social 's #orangetober so figured I'd bring a friend out with me today!
An orange monkey standing on the pavement.
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George Monbiot @georgemonbiot.bsky.social · 08/10/2025
ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long. There's a huge BUT coming ...🧵 www.theguardian.com/society/2025...
theguardian.com
Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome
Research could offer hope for ME patients – but some experts urge caution and say more studies needed
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sarah boothby @swastrosarah.bsky.social · 31/07/2025
Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear. #MEKills #HumanRights
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ThereForME @thereforme.bsky.social · 22/07/2025
After 3+ years of waiting the Final Delivery Plan for ME is being released today. Our comment 👇
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@doublewhammied @doublewhammied.bsky.social · 09/07/2025
This seems big. "By studying bioenergetic characteristics of immune cells in healthy controls + #ME/#CFS & #longcovid patients, we find lymphocytes from ppl w/ME/CFS & LC exhibit elevated oxidative stress. Due 2 excess oxidative stress & consequent mitochondrial ..." 1/2 #IDSky #CanSky #MedSky
pnas.org
Oxidative stress is a shared characteristic of ME/CFS and Long COVID | PNAS
Over 65 million individuals worldwide are estimated to have Long COVID (LC), a complex multisystemic condition marked by fatigue, post-exertional m...
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Private Eye Magazine @privateeyenews.bsky.social · 27/06/2025
Real photo of the week From the new Private Eye, out now.
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mookpixie @mookpixie.bsky.social · 18/06/2025
A picture from the day I mention in my message for the mirrorbox. I am so happy it’s another blue sky and sunshine day today. You can listen to my message here: www.iwouldbehereificould.com/message/glas...
A photo from 2001 of a group of people in their 20s laying on the grass at the top of Glastonbury Tor. The sky is a beautiful blue and the sun is shining. St Michael’s Tower is partially visible in the background.
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Adam @abrokenbattery.bsky.social · 29/05/2025
TW: Highlights BBC Radio Bristol - Alison Larkman talks about the Mirrorbox Project which shares the voices of people with #MECFS & #LongCovid — including the severe who are not seen: bedbound, tube-fed, living in darkness.
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Rob Acton-Campbell @robcrewshole.bsky.social · 01/06/2025
Troopers Hill chimney reflected in the Mirror Box earlier today. People coming out were visibly moved by Lizzy's - @hopefullizzy.bsky.social - message. Next Ashton Court, then Glastonbury Tor. www.iwouldbehereificould.com/mirrorbox-jo...
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Lizzy @hopefullizzy.bsky.social · 02/06/2025
Yesterday was phenomenal! 160+ people came out and battled the wind to stand in a #mirrorbox to listen to my message, while looking at a place I love, & for many, that they do too. I’ve been wiped out today from the messages & hype, it was so lovely having my family come home & tell me about it all
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Hannah @pipsminitwee.bsky.social · 12/05/2025
I have been missing from life since 2000. So many #PwME are just existing, not living. It is a much misunderstood, cruel, often mocked illness. #MEawarenessDay #LearnFromME #BelieveME #MyalgicE #PwME #MillionsMissing #StillTheSaME #WorldMEday #MEawarenessWeek #MEnotCFS
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Something Chronic @somethingchronic.bsky.social · 12/05/2025
ME is one of the cruellest diseases you can possibly have. Most people think it’s as insignificant as having a cold. #May12 #MEAwarenessDay #StillTheSaME #StillSickStillFighting #ME #MECFS #SevereME #LongCovid #EndMEcfs #MEAction #MillionsMissing #GreatestMEdicalScandal #ThereForME #BerlinBuyers
Pink background with bright blue text saying: I haven’t been able to get downstairs in my own house for 2 years #SevereME
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Julie Houston @julesahouston.bsky.social · 12/05/2025
Nothing new to say this #MEAwarenessDay. My brain’s wrecked, my body’s broken, and after 27 years, nothing has changed: no progress, no treatments, no cure. It's #StillTheSaME and the fury burns. Sending love & solidarity to you all. #LeftToRot
Square text box with blue background. Text in white saying Nothing new to say this #MEAwarenessDay. My brain’s wrecked, my body’s broken, and after 27 years, nothing has changed: no  progress, no treatments, no cure.  It's #StillTheSaME and the fury burns. Sending love & solidarity to you all. #LeftToRot
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Tessa Munt MP 🔶 @tessamunt.bsky.social · 17/04/2025
As Lizzy illustrates so powerfully, PIP is vital for so many #pwME #pwLC. With so much concern at proposed welfare reforms, it’s been good to start work with @joplatt.bsky.social and @actionforme.bsky.social to better understand issues, and how to mitigate, with joint APPG ME/LC meeting next week.
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Tessa Munt MP 🔶 @tessamunt.bsky.social · 08/05/2025
So delighted that all 72 LibDem MPs signed this letter to @rthonwesstreeting.bsky.social @ashleydaltonmp.bsky.social asking the govt to back the ME/CFS Delivery Plan with the resources it deserves. May this be a huge encouragement to the ME community and the start of meaningful change. #WorldMEDay
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Emily Sturgess @emilysturge.bsky.social · 12/05/2025
This World ME day, things need to change.
A joint statement for World ME day- I can't copy the text from the image, but it's available at the link in the quoted post.
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Patient Safety Learning @patientsafetylearning.org · 12/05/2025
Today is #WorldMEDay. In this blog, shared on our patient safety platform the hub earlier this year, @thereforme.bsky.social look at the barriers that impact access to NHS care for people with ME and Long Covid. www.pslhub.org/learn/improv... #MEAwarenessDay
pslhub.org
Exploring the barriers that impact access to NHS care for people with ME and Long Covid
#ThereForME explores the barriers that impact access to NHS care for people with ME and Long Covid, and encourages the patient community to share their experiences
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ThereForME @thereforme.bsky.social · 12/05/2025
On #WorldMEDay the UK ME community faces a twofold threat: the loss of critical welfare benefits, and a lack of meaningful treatments to pave their way back to work. This must change. We’re asking the government to back the new ME Delivery Plan with the resources it deserves.
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Emma Mitchell @silverpebble2.bsky.social · 25/04/2025
My new workshop:small museums for mental health, is now live. I'll teach you how creating small museums alters brain biochemistry to improve mental health & we'll make small museums together 24 May,zoom, recording available afterwards Open to anyone,anywhere workshops.emmamitchell.uk/courses/smal...
Collection of small spring nature findsCollection of spring nature finds in antique typesetter's trayCollection of finds from Old Hunstanton beach made in 2019Collection of small autumnal finds
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Lizzy @hopefullizzy.bsky.social · 31/03/2025
@teamlabouruk.bsky.social These are a FEW of the things I use my PIP for… Stair lift, recliner, hot waterbottles for pain relief & warmth, adapted cushion, portable toilet, medical devices to help drs assess, noise cancelling headphones, adaptive clothes/coats, wash bowls/cloths
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Radio Lento @radiolento.bsky.social · 28/01/2025
Need a longer listen to help you drift off? Here are a few of our longer *sleep safe* episodes to try.
radiolento.wordpress.com
Longer sleep safe episodes
Longer Radio Lento episodes to listen to while resting or trying to get to sleep.
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Paula Knight 🎨✒️♿ @paulaknight.bsky.social · 28/01/2025
Once again please: Online/ virtual/ social media are the ONLY ways many can be involved in the public sphere and connect to other human beings. If, after 5 yrs' pandemic, you think that in-person is superior, you need to take a deeper look at who isn't at your table/ is excluded. #disability #EDI
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Alexis Gilbert @alexisme.bsky.social · 15/01/2025
Despite being severely unwell @katiamek.bsky.social spent her precious energy to speak out about this negligent treatment she’s been through in an effort to stop others experiencing the same. time.com/7206080/long...
A screenshot of the article with the text: Katiana Mekka, a 26-year-old Long COVID patient from Greece, says education is especially needed outside the U.S. Last fall, she says, she was involuntarily committed to a psychiatric ward and held for three days, until she passed a thorough screening test for mental-health disorders. The ordeal worsened her already severe illness, leaving her virtually unable to eat, move, or talk for days after.
"These illnesses are so mistreated and misdiagnosed," Mekka says, adding that so few doctors in Greece know about Long COVID that she has been forced to seek
virtual support from specialists in other countries. "The patients that I know, we all have so much will to live and so many
dreams. This is not a mental issue. We have severe symptoms."
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Carl Bovis @carlbovisnature.bsky.social · 06/01/2025
My seed, keep away!! 😁 A male Chaffinch and Great Tit at RSPB Greylake in Somerset last week. 😊🐦 #birds 🪶
A male Chaffinch defending a pile of seed from an incoming Great Tit
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Chronically ill Artists Network @chronicallyillart.bsky.social · 11/12/2024
ICYMI visual notes from our networking events this past year, all done by the wonderful Amber Anderson! We'll be sure to have more events in the new year, so follow us and keep an eye out for those announcements :)
A pink and purple page of illustrations on the theme of Navigating & Progressing in the Arts when Chronically Ill, including sections on change in the arts sector, discussions, systems being ableist, finding connection and community, learning to communicate your needs, and believing in the social modelAn orange page of visual notes and illustrations on the theme of Saving up tiny joys and Finding openings for joy in a chronic creative life, including sections on Joy as resistance and a creative force, creative play, joy as a way of pushing through, nurturing your disabled joy, having generosity in access, and reframing what counts
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C.H. Romatowski @romatowski.bsky.social · 25/11/2024
Today’s featured article on Wikipedia’s homepage is the ME/CFS entry! If you’re not familiar with ME/CFS, this is a great overview of a debilitating condition very commonly triggered by Covid. en.wikipedia.org/wiki/Myalgic...
From today's featured article

Graphic showing four icons labeled profound fatigue, worsening from exertion, disrupted sleep and brain fog

Text reads:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling chronic illness. People with ME/CFS experience profound fatigue
Symptoms of ME/CFS that does not go away with rest, sleep issues, and problems with memory or concentration.
The hallmark symptom is a worsening of the illness which starts hours to days after minor physical or mental activity, and lasts from hours to several months.
The cause of the disease is unknown. ME/CFS often starts after an infection, and many people fit the ME/CFS diagnostic criteria after contracting long COVID. Diagnosis is based on symptoms because no diagnostic test is available. The illness can improve or worsen over time, but full recovery is uncommon. No therapies or medications are approved to treat the condition, and management is aimed at relieving symptoms. About a quarter of those affected are unable to leave their bed or home. People with ME/CFS often face stigma in healthcare settings, and care is complicated by controversies around the cause and treatments of the illness. (Full article...)
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