Sarah H

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

An orange monkey standing on the pavement.

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!

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

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...

The Jolly Postman was excellent as well- loved that as a child

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

I’m very youthful, and you have receding/thinning hair with a beard 😂

After 3+ years of waiting the Final Delivery Plan for ME is being released today.

Our comment 👇

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...

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

Real photo of the week

From the new Private Eye, out now.

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.

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...

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

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

Pink background with bright blue text saying: I haven’t been able to get downstairs in my own house for 2 years #SevereME

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

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

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

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.

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

This World ME day, things need to change.

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

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

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.

Collection of small spring nature finds

Collection of spring nature finds in antique typesetter's tray

Collection of finds from Old Hunstanton beach made in 2019

Collection of small autumnal finds

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...

@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

Longer sleep safe episodes Longer Radio Lento episodes to listen to while resting or trying to get to sleep.

Need a longer listen to help you drift off? Here are a few of our longer *sleep safe* episodes to try.

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

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."

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 male Chaffinch defending a pile of seed from an incoming Great Tit

My seed, keep away!! 😁
A male Chaffinch and Great Tit at RSPB Greylake in Somerset last week. 😊🐦
#birds 🪶

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 model

An 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

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 :)

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...)

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...