Sarah H
@sazzi91.bsky.social
creativity, baking👩🍳 tv 💻 nature 🌷 chronically ill; ME/CFS since 2002 🐌 🇪🇺 IG: @sazzi_crafts #MillionsMissing
Reposted by 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
gofundme.com/savejenny
October 11, 2025 at 3:32 PM
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/savejenny
Reposted by Sarah H
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!
October 11, 2025 at 12:24 PM
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!
Reposted by Sarah H
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...
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...
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
www.theguardian.com
October 8, 2025 at 6:09 AM
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...
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...
Reposted by Sarah H
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
#MEKills #HumanRights
July 31, 2025 at 6:45 AM
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
#MEKills #HumanRights
Reposted by Sarah H
After 3+ years of waiting the Final Delivery Plan for ME is being released today.
Our comment 👇
Our comment 👇
July 22, 2025 at 8:09 AM
After 3+ years of waiting the Final Delivery Plan for ME is being released today.
Our comment 👇
Our comment 👇
Reposted by Sarah H
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
"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
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...
www.pnas.org
July 9, 2025 at 2:46 PM
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
"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
Reposted by Sarah H
Real photo of the week
From the new Private Eye, out now.
From the new Private Eye, out now.
June 27, 2025 at 8:16 AM
Real photo of the week
From the new Private Eye, out now.
From the new Private Eye, out now.
Reposted by Sarah H
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.
May 29, 2025 at 5:03 AM
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.
Reposted by Sarah H
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...
People coming out were visibly moved by Lizzy's - @hopefullizzy.bsky.social - message.
Next Ashton Court, then Glastonbury Tor.
www.iwouldbehereificould.com/mirrorbox-jo...
June 1, 2025 at 8:13 PM
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...
People coming out were visibly moved by Lizzy's - @hopefullizzy.bsky.social - message.
Next Ashton Court, then Glastonbury Tor.
www.iwouldbehereificould.com/mirrorbox-jo...
Reposted by Sarah H
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’ve been wiped out today from the messages & hype, it was so lovely having my family come home & tell me about it all
June 2, 2025 at 9:57 PM
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’ve been wiped out today from the messages & hype, it was so lovely having my family come home & tell me about it all
Reposted by Sarah H
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
It is a much misunderstood, cruel, often mocked illness.
#MEawarenessDay #LearnFromME #BelieveME #MyalgicE #PwME #MillionsMissing
#StillTheSaME #WorldMEday #MEawarenessWeek #MEnotCFS
May 11, 2025 at 11:14 PM
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
It is a much misunderstood, cruel, often mocked illness.
#MEawarenessDay #LearnFromME #BelieveME #MyalgicE #PwME #MillionsMissing
#StillTheSaME #WorldMEday #MEawarenessWeek #MEnotCFS
Reposted by Sarah H
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
#May12 #MEAwarenessDay #StillTheSaME #StillSickStillFighting #ME #MECFS #SevereME #LongCovid #EndMEcfs #MEAction #MillionsMissing #GreatestMEdicalScandal #ThereForME #BerlinBuyers
May 12, 2025 at 8:06 AM
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
#May12 #MEAwarenessDay #StillTheSaME #StillSickStillFighting #ME #MECFS #SevereME #LongCovid #EndMEcfs #MEAction #MillionsMissing #GreatestMEdicalScandal #ThereForME #BerlinBuyers
Reposted by Sarah H
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
May 12, 2025 at 8:34 AM
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
Reposted by Sarah H
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.
@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
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
April 17, 2025 at 4:00 PM
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.
Reposted by Sarah H
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
May 8, 2025 at 4:32 PM
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
Reposted by Sarah H
This World ME day, things need to change.
May 12, 2025 at 10:03 AM
This World ME day, things need to change.
Reposted by Sarah H
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
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
www.pslhub.org
May 12, 2025 at 10:53 AM
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
Reposted by Sarah H
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.
This must change.
We’re asking the government to back the new ME Delivery Plan with the resources it deserves.
May 12, 2025 at 8:02 AM
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.
This must change.
We’re asking the government to back the new ME Delivery Plan with the resources it deserves.
Reposted by Sarah H
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...
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...
April 25, 2025 at 11:44 AM
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...
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...
Reposted by Sarah H
@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
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
March 31, 2025 at 1:18 PM
@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
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
Reposted by Sarah H
Need a longer listen to help you drift off? Here are a few of our longer *sleep safe* episodes to try.
Longer sleep safe episodes
Longer Radio Lento episodes to listen to while resting or trying to get to sleep.
radiolento.wordpress.com
January 28, 2025 at 10:15 PM
Need a longer listen to help you drift off? Here are a few of our longer *sleep safe* episodes to try.
Reposted by Sarah H
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
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
January 28, 2025 at 9:08 AM
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
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
Reposted by Sarah H
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...
January 15, 2025 at 11:07 AM
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...