Sarah Barley-McMullen (she/her)
@sarahbarleymc.bsky.social
Ill health retired 😞FHEA🎓Christian. Chair, Pride in Belper 🏳️🌈🏳️⚧️. Volunteer Long Covid SOS. JNC. Married to my Wife. ❤️Long Covid-autoimmune/immunocompromised
Reposted by Sarah Barley-McMullen (she/her)
A huge thank you to our speakers in the last session at today's Winter Symposium, @sarahbarleymc.bsky.social, Dr Cliff Shelton, and Dr Helen J Burdett, who have highlighted the disparities between patients and the workforce by recognising the steps towards improvement.
November 20, 2025 at 5:05 PM
A huge thank you to our speakers in the last session at today's Winter Symposium, @sarahbarleymc.bsky.social, Dr Cliff Shelton, and Dr Helen J Burdett, who have highlighted the disparities between patients and the workforce by recognising the steps towards improvement.
Reposted by Sarah Barley-McMullen (she/her)
RFK Jr. will eliminate as many vaccines as he can.
Every step he takes at the CDC is in service of this aim, as well as undermining public health infrastructure overall.
He cannot tolerate scientists who know more than he does, so they must go.
Another great piece by @melodyschreiber.com.
Every step he takes at the CDC is in service of this aim, as well as undermining public health infrastructure overall.
He cannot tolerate scientists who know more than he does, so they must go.
Another great piece by @melodyschreiber.com.
Threat to US vaccines as CDC staff supporting key advisory panel laid off
Critics say scientists ‘held hostage’ by RFK Jr as changes mean vaccine development and guidance in peril
www.theguardian.com
October 27, 2025 at 2:47 PM
RFK Jr. will eliminate as many vaccines as he can.
Every step he takes at the CDC is in service of this aim, as well as undermining public health infrastructure overall.
He cannot tolerate scientists who know more than he does, so they must go.
Another great piece by @melodyschreiber.com.
Every step he takes at the CDC is in service of this aim, as well as undermining public health infrastructure overall.
He cannot tolerate scientists who know more than he does, so they must go.
Another great piece by @melodyschreiber.com.
Reposted by Sarah Barley-McMullen (she/her)
“We are told by leaders that we are the future. But when it comes to the ongoing pandemic, our present is being stolen right in front of our eyes.”
Incredible speech by Violet Affleck who warned about the ongoing dangers of COVID & Long Covid, & advocated for masks and clean air at the UN today!
Incredible speech by Violet Affleck who warned about the ongoing dangers of COVID & Long Covid, & advocated for masks and clean air at the UN today!
September 23, 2025 at 9:53 PM
“We are told by leaders that we are the future. But when it comes to the ongoing pandemic, our present is being stolen right in front of our eyes.”
Incredible speech by Violet Affleck who warned about the ongoing dangers of COVID & Long Covid, & advocated for masks and clean air at the UN today!
Incredible speech by Violet Affleck who warned about the ongoing dangers of COVID & Long Covid, & advocated for masks and clean air at the UN today!
Reposted by Sarah Barley-McMullen (she/her)
www.theguardian.com/society/2025...
Ondine did such a huge job to get recognition for all with Long Covid👇
Ondine did such a huge job to get recognition for all with Long Covid👇
Ondine Sherwood obituary
Other lives: Founder of a group campaigning for the recognition of Long Covid
www.theguardian.com
June 19, 2025 at 4:40 AM
www.theguardian.com/society/2025...
Ondine did such a huge job to get recognition for all with Long Covid👇
Ondine did such a huge job to get recognition for all with Long Covid👇
Reposted by Sarah Barley-McMullen (she/her)
“This is an existential threat.”
"The #LongCOVID community must band together & resist draconian measures,” the anonymous researcher said. “Advocate for some stability for funding for LC research & care.” — @thesicktimes.bsky.social
thesicktimes.org/2025/03/27/r...
"The #LongCOVID community must band together & resist draconian measures,” the anonymous researcher said. “Advocate for some stability for funding for LC research & care.” — @thesicktimes.bsky.social
thesicktimes.org/2025/03/27/r...
RECOVER grants for Long COVID pathobiology research are among those cut under new NIH directive - The Sick Times
Some grants for Long COVID pathobiology research in the National Institutes of Health’s RECOVER program are among those rescinded by the federal government this week under a new order to cut all fundi...
thesicktimes.org
March 27, 2025 at 9:53 PM
“This is an existential threat.”
"The #LongCOVID community must band together & resist draconian measures,” the anonymous researcher said. “Advocate for some stability for funding for LC research & care.” — @thesicktimes.bsky.social
thesicktimes.org/2025/03/27/r...
"The #LongCOVID community must band together & resist draconian measures,” the anonymous researcher said. “Advocate for some stability for funding for LC research & care.” — @thesicktimes.bsky.social
thesicktimes.org/2025/03/27/r...
Reposted by Sarah Barley-McMullen (she/her)
Thank you so much Sarah for an incredibly impacting address to the clinicians attending the Clinical Post Covid-19 Society Conference in Birmingham yesterday!
#LongCovid
youtube.com/watch?v=VuwT...
#LongCovid
youtube.com/watch?v=VuwT...
Supporting People with Long Covid, and Work
YouTube video by Sarah Barley-McMullen
youtube.com
March 27, 2025 at 9:45 AM
Thank you so much Sarah for an incredibly impacting address to the clinicians attending the Clinical Post Covid-19 Society Conference in Birmingham yesterday!
#LongCovid
youtube.com/watch?v=VuwT...
#LongCovid
youtube.com/watch?v=VuwT...
Good. 👇🏼👇🏾
💥 BREAKING: Walt Disney Company shareholders voted today 99-1 percent to reject an anti-LGBTQ+ proposal, requesting that the company sever its relationship with the Human Rights Campaign and HRC's Corporate Equality Index. Disney Board recommended shareholders vote against the proposal.
March 20, 2025 at 7:13 PM
Good. 👇🏼👇🏾
Somehow, I managed to keep my PIP today…
What a hideous situation to find yourself in - no one chooses to be ill or disabled!
@longcovidsos.bsky.social @longcovidsupport.bsky.social @longcovidkids.bsky.social @longcovidphysio.bsky.social
What a hideous situation to find yourself in - no one chooses to be ill or disabled!
@longcovidsos.bsky.social @longcovidsupport.bsky.social @longcovidkids.bsky.social @longcovidphysio.bsky.social
March 18, 2025 at 6:43 PM
Somehow, I managed to keep my PIP today…
What a hideous situation to find yourself in - no one chooses to be ill or disabled!
@longcovidsos.bsky.social @longcovidsupport.bsky.social @longcovidkids.bsky.social @longcovidphysio.bsky.social
What a hideous situation to find yourself in - no one chooses to be ill or disabled!
@longcovidsos.bsky.social @longcovidsupport.bsky.social @longcovidkids.bsky.social @longcovidphysio.bsky.social
“Ondine was an incredible activist for the Long Covid community and driving force behind our participation in the Inquiry. She is sorely missed.”
@longcovidsos
@longcovidsos
A wonderful article by Jane Ryan on #LongCovid and the #CovidInquiry.
Thank you for your lovely tribute to Ondine:
“Ondine was an incredible activist for the Long Covid community and driving force behind our participation in the Inquiry. She is sorely missed.”
Thank you for your lovely tribute to Ondine:
“Ondine was an incredible activist for the Long Covid community and driving force behind our participation in the Inquiry. She is sorely missed.”
Today’s #ThereForME blog is from Jane Ryan, legal representative for the Long Covid groups at the UK’s Covid inquiry.
As we mark #LongCovidAwarenessDay, Jane reflects on what we’ve seen so far and what we can expect as the inquiry continues to unfold.
www.thereforme.uk/p/probing-an...
As we mark #LongCovidAwarenessDay, Jane reflects on what we’ve seen so far and what we can expect as the inquiry continues to unfold.
www.thereforme.uk/p/probing-an...
March 18, 2025 at 9:51 AM
“Ondine was an incredible activist for the Long Covid community and driving force behind our participation in the Inquiry. She is sorely missed.”
@longcovidsos
@longcovidsos
Reposted by Sarah Barley-McMullen (she/her)
Today’s #ThereForME blog is from Jane Ryan, legal representative for the Long Covid groups at the UK’s Covid inquiry.
As we mark #LongCovidAwarenessDay, Jane reflects on what we’ve seen so far and what we can expect as the inquiry continues to unfold.
www.thereforme.uk/p/probing-an...
As we mark #LongCovidAwarenessDay, Jane reflects on what we’ve seen so far and what we can expect as the inquiry continues to unfold.
www.thereforme.uk/p/probing-an...
March 18, 2025 at 9:15 AM
Today’s #ThereForME blog is from Jane Ryan, legal representative for the Long Covid groups at the UK’s Covid inquiry.
As we mark #LongCovidAwarenessDay, Jane reflects on what we’ve seen so far and what we can expect as the inquiry continues to unfold.
www.thereforme.uk/p/probing-an...
As we mark #LongCovidAwarenessDay, Jane reflects on what we’ve seen so far and what we can expect as the inquiry continues to unfold.
www.thereforme.uk/p/probing-an...
Reposted by Sarah Barley-McMullen (she/her)
“In 2025, Long Covid is the public health crisis no one wants to talk about, taking a wrecking ball to people’s lives, the economy and the health service while those with power pretend there’s nothing to see here.”
www.theguardian.com/commentisfre...
www.theguardian.com/commentisfre...
Long Covid is the pandemic’s dark shadow. Why does no one in power in Britain want to talk about it? | Frances Ryan
Five years after the first lockdown, millions of lives are still being ruined by this debilitating disease. You wouldn’t know it, says Guardian columnist Frances Ryan
www.theguardian.com
March 17, 2025 at 9:47 AM
“In 2025, Long Covid is the public health crisis no one wants to talk about, taking a wrecking ball to people’s lives, the economy and the health service while those with power pretend there’s nothing to see here.”
www.theguardian.com/commentisfre...
www.theguardian.com/commentisfre...
On Tuesday we lost Ondine, the co-founder and CEO of the charity I volunteer for, @longcovidsos.bsky.social
Ondine was a force for GOOD. She was clever, articulate and respected. And she was my friend. ❤️🩹
My heart goes out to her family and friends ❤️
I am a better person because I knew Ondine. ❤️🩹
Ondine was a force for GOOD. She was clever, articulate and respected. And she was my friend. ❤️🩹
My heart goes out to her family and friends ❤️
I am a better person because I knew Ondine. ❤️🩹
March 13, 2025 at 10:43 AM
On Tuesday we lost Ondine, the co-founder and CEO of the charity I volunteer for, @longcovidsos.bsky.social
Ondine was a force for GOOD. She was clever, articulate and respected. And she was my friend. ❤️🩹
My heart goes out to her family and friends ❤️
I am a better person because I knew Ondine. ❤️🩹
Ondine was a force for GOOD. She was clever, articulate and respected. And she was my friend. ❤️🩹
My heart goes out to her family and friends ❤️
I am a better person because I knew Ondine. ❤️🩹
Reposted by Sarah Barley-McMullen (she/her)
(1/3) It needs repeating: in 1994, Ukraine was persuaded to give up its nuclear weapons to Russia in return for the US, the UK, and Russia guaranteeing Ukraine’s sovereignty, security, and territorial integrity.
March 4, 2025 at 5:57 PM
(1/3) It needs repeating: in 1994, Ukraine was persuaded to give up its nuclear weapons to Russia in return for the US, the UK, and Russia guaranteeing Ukraine’s sovereignty, security, and territorial integrity.
Organisations who believe in real fairness and the positive power of diversity - believe in DEI 👇🏼👇🏾
💥 BREAKING: At John Deere's annual shareholders meeting today, shareholders overwhelmingly rejected an anti-DEI proposal brought by the same group that targeted Costco and Apple. An anti-DEI proposal from the NCPPR received less than 1 percent of votes.
Deere shareholders: DEI is in. Bigots are out
Deere shareholders: DEI is in. Bigots are out
February 27, 2025 at 2:49 PM
Organisations who believe in real fairness and the positive power of diversity - believe in DEI 👇🏼👇🏾
Reposted by Sarah Barley-McMullen (she/her)
Brilliant protest. Yosemite National Park workers hung an upside-down American flag — traditionally a symbol of distress or a national threat — thousands of feet off the ground on the side of El Capitan.
February 23, 2025 at 5:57 AM
Brilliant protest. Yosemite National Park workers hung an upside-down American flag — traditionally a symbol of distress or a national threat — thousands of feet off the ground on the side of El Capitan.
Reposted by Sarah Barley-McMullen (she/her)
Reminder of the sale on all of our #LongCovidAwareness fundraising merch continues through Monday 17th - don’t hang around!
Click through to our global store here to get ready for International #LongCovid Awareness Day on 15 March
longcovidsos.myspreadshop.co.uk
Click through to our global store here to get ready for International #LongCovid Awareness Day on 15 March
longcovidsos.myspreadshop.co.uk
February 16, 2025 at 12:35 PM
Reminder of the sale on all of our #LongCovidAwareness fundraising merch continues through Monday 17th - don’t hang around!
Click through to our global store here to get ready for International #LongCovid Awareness Day on 15 March
longcovidsos.myspreadshop.co.uk
Click through to our global store here to get ready for International #LongCovid Awareness Day on 15 March
longcovidsos.myspreadshop.co.uk
Reposted by Sarah Barley-McMullen (she/her)
February 13, 2025 at 7:06 PM
Reposted by Sarah Barley-McMullen (she/her)
This news report only highlights how the economic burden of #LongCovid will continue to grow as clinics are closed and key symptoms are ignored or written off as health anxiety.
We call on the govt & NHS to recognise and treat #pwLC appropriately
Www.longcovidsos.org/bill-of-rights
We call on the govt & NHS to recognise and treat #pwLC appropriately
Www.longcovidsos.org/bill-of-rights
BILL OF RIGHTS | Long Covid SOS
HOME
Www.longcovidsos.org
February 13, 2025 at 6:06 PM
This news report only highlights how the economic burden of #LongCovid will continue to grow as clinics are closed and key symptoms are ignored or written off as health anxiety.
We call on the govt & NHS to recognise and treat #pwLC appropriately
Www.longcovidsos.org/bill-of-rights
We call on the govt & NHS to recognise and treat #pwLC appropriately
Www.longcovidsos.org/bill-of-rights
Reposted by Sarah Barley-McMullen (she/her)
We were shocked by this Sky News report suggesting with little more than anecdotes that increased presentations at A&E by young people with chest pain is due to health anxiety when chest pain & palpitations are common #LongCovid symptoms
Health anxiety - not emergencies - clogging up A&E, doctors warn
Health anxiety - not emergencies - clogging up A&E, doctors warn
Patients are demanding urgent and immediate care when it is not always what they need, doctors say - and it's making the NHS winter crisis worse.
news.sky.com
February 13, 2025 at 6:06 PM
We were shocked by this Sky News report suggesting with little more than anecdotes that increased presentations at A&E by young people with chest pain is due to health anxiety when chest pain & palpitations are common #LongCovid symptoms
Reposted by Sarah Barley-McMullen (she/her)
Roses are red,
Violets are blue,
Long Covid can break your heart,
We’d be lost without you
Happy Valentine’s Day to our incredible #LongCovid community!
Through ups & downs, setbacks and small victories, our community stands strong - offering support, understanding, & hope when it’s needed most.
Violets are blue,
Long Covid can break your heart,
We’d be lost without you
Happy Valentine’s Day to our incredible #LongCovid community!
Through ups & downs, setbacks and small victories, our community stands strong - offering support, understanding, & hope when it’s needed most.
February 14, 2025 at 9:07 AM
Roses are red,
Violets are blue,
Long Covid can break your heart,
We’d be lost without you
Happy Valentine’s Day to our incredible #LongCovid community!
Through ups & downs, setbacks and small victories, our community stands strong - offering support, understanding, & hope when it’s needed most.
Violets are blue,
Long Covid can break your heart,
We’d be lost without you
Happy Valentine’s Day to our incredible #LongCovid community!
Through ups & downs, setbacks and small victories, our community stands strong - offering support, understanding, & hope when it’s needed most.
Reposted by Sarah Barley-McMullen (she/her)
Please sign, send to your MP & share
"Ask your MP to write to the Secretary of State for Work & Pensions re cuts to benefits
Disabled people need security & support to move into work when it is right to do so, not cuts & sanctions." z2k.eaction.org.uk/MP-Secretary...
"Ask your MP to write to the Secretary of State for Work & Pensions re cuts to benefits
Disabled people need security & support to move into work when it is right to do so, not cuts & sanctions." z2k.eaction.org.uk/MP-Secretary...
Ask your MP to write to the Secretary of State for Work and Pensions
z2k.eaction.org.uk
February 6, 2025 at 9:40 AM
Please sign, send to your MP & share
"Ask your MP to write to the Secretary of State for Work & Pensions re cuts to benefits
Disabled people need security & support to move into work when it is right to do so, not cuts & sanctions." z2k.eaction.org.uk/MP-Secretary...
"Ask your MP to write to the Secretary of State for Work & Pensions re cuts to benefits
Disabled people need security & support to move into work when it is right to do so, not cuts & sanctions." z2k.eaction.org.uk/MP-Secretary...
Judge rules Trump’s executive order discriminates against trans people and violates their constitutional rights…
#LGBTQ+
#transrights
@prideinbelper.bsky.social
#LGBTQ+
#transrights
@prideinbelper.bsky.social
US judge temporarily blocks transfer of incarcerated trans women to men’s prisons
Judge rules Trump’s executive order discriminates against trans people and violates their constitutional rights
www.theguardian.com
February 5, 2025 at 10:44 PM
Judge rules Trump’s executive order discriminates against trans people and violates their constitutional rights…
#LGBTQ+
#transrights
@prideinbelper.bsky.social
#LGBTQ+
#transrights
@prideinbelper.bsky.social
This is what faith, courage and allyship look like… 🙏🏼🏳️🌈🏳️⚧️❤️
#LGBTQ+ #WeSeeYou
From 6 mins 30secs.
youtu.be/31ylIPemGlE?...
#LGBTQ+ #WeSeeYou
From 6 mins 30secs.
youtu.be/31ylIPemGlE?...
See moment reverend pleads with Trump to have mercy on immigrants
YouTube video by CNN
youtu.be
January 22, 2025 at 8:30 AM
This is what faith, courage and allyship look like… 🙏🏼🏳️🌈🏳️⚧️❤️
#LGBTQ+ #WeSeeYou
From 6 mins 30secs.
youtu.be/31ylIPemGlE?...
#LGBTQ+ #WeSeeYou
From 6 mins 30secs.
youtu.be/31ylIPemGlE?...