iiinova — where your digital self keeps evolving

Reposted by Long Covid Advocacy Ireland-LCAI

Peter White @mediumwhite.bsky.social · 19/06/2025

Excellent presentation made by Dr @binitakane.bsky.social to the APPGs on ME and #LongCovid. We are fortunate to have a Doctor who understands the problems, sees the need for change and can communicate so well. Also some strong new thinking for #pwME. (1 of 4 short vids)

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Long Covid Kids @longcovidkids.bsky.social · 25/06/2025

"#LongCovid isn’t a problem until we can find no other explanation for why millions.. are unable to work, school performance & children’s health decline in unison, & no one can remember what it feels like not to be sick all of the time" #VioletAffleck yaleglobalhealthreview.com/2025/05/18/a...

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Long Covid UK @longcoviduk.bsky.social · 24/06/2025

🚨1/5. Cutting PIP will: ⚠️ Push people further away from work ⚠️ Increase poverty ⚠️ Drive decline in health & independence See what people said below ⬇️ 📧 Contact your MP today & ask them to oppose the proposed welfare changes!! #LongCovid #TakingThePIP

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Long Covid Advocacy Ireland-LCAI @lcaireland.bsky.social · 19/06/2025

Join us this Sunday for our monthly support meeting online for spouses/partners and carers. #LongCovid

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Long Covid UK @longcoviduk.bsky.social · 17/06/2025

📣 1/2. Minutes available from joint meeting of APPG on #LongCovid & APPG on #ME! 🔴 Stephen Timms MP (DWP) spoke on proposed welfare reforms, with APPGs raising concerns 🔴 Research talks from Prof. Danny Altmann, Dr. Binita Kane, Prof. Chris Ponting & Prof. David Strain Link ⬇️

Black background with logos for the APPG on Long Covid and APPG on Myalgic Encephalomyelitis (ME) across the top. On the right is a photograph of Jo Platt MP. Text consists of a quote saying "I suffered with Long Covid and ME. I wanted nothing more than to work. I was able to be supported back into employment because I managed myself. We've really got to get this bit right. Because you cannot just force people back". Below the quote it says Jo Platt MP Chair of the APPG on Long Covid and APPG on ME.

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Dr. Jen Irwin @drjenirwin.bsky.social · 16/06/2025

JAMA Pediatrics published a patient info page about Long COVID in children… “Long COVID is common, affecting up to 10 to 20 per cent of children with a history of COVID-19. … this is higher than the number of children with asthma…” TY @blakemurdoch.bsky.social ! edmontonjournal.com/opinion/colu...

edmontonjournal.com

Opinion: UCP's COVID vaccine cuts put children at serious risk

A policy of ending pediatric COVID vaccination will disable, hospitalize and even kill Albertan children, leaving blood on Smith’s hands.

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Denis - The COVID Info Guy @thecovidinfoguy.bsky.social · 16/06/2025

Long COVID is Now the Number One Chronic Illness in Children. "So many children are getting Long COVID because COVID causes Long COVID, and children are not “immune” to COVID, they are not becoming healthier with each infection, and the adults around them are doing nothing to mitigate the virus."

thegauntlet.news

Long COVID is Now the Number One Chronic Illness in Children

Repeatedly mass infecting kids with COVID is not a public health strategy. It's a fast pass to declining population health

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ME Association @meassociation.org.uk · 17/06/2025

1/4 📢 The official minutes from the first joint ME and Long Covid APPG meeting are now available! 🔗 appgme.co.uk/meetings/min...

IMAGE DESCRIPTION: The Houses of Parliament and Big Ben with logos of APPG on ME, APPG on Long Covid, Action for ME, Long Covid Support, and the ME Association. A QR code is included. Text reads: “Joint-ME & Long Covid APPG meeting minutes are available.”

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Reposted by Long Covid Advocacy Ireland-LCAI

Tom Kindlon @tomkindlon.bsky.social · 05/06/2025

How pandemics reshape our brain: Common links and targets between long-haul COVID-19, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), oxidative stress, and neurodegeneration Free: onlinelibrary.wiley.com/doi/10.1002/... #LongCovid #MEcfs

Highlights

Fatiguing syndromes affect millions of patients in the United States and globally, but are grossly underserved in the clinic and in the contemplative design of basic research.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex multisystem metabolic-immune-inflammatory disorder. Although research on this condition is in its infancy, it appears to involve the immune system and central nervous system malfunction, with cellular oxidative stress as a predominant feature.

Approximately half of the cases of long-haul coronavirus disease 2019 meet the diagnostic criteria for ME/CFS, burgeoning the number of affected individuals.

Recent strides in neurobiology have yet to transfer the understanding of the neurodegenerative aspects, and potential for neuroprotection, of ME/CFS.

ME/CFS may represent a useful paradigm and research model for the study of the impact of sustained oxidative stress on the central nervous system and the body at large.

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Long Covid Kids @longcovidkids.bsky.social · 27/05/2025

‘Results of this cohort study suggest that symptom patterns were distinguishable across infants/toddlers and preschool-aged children, and from previously studied older children and adults.’ jamanetwork.com/journals/jam... #PaediatricLongCovid #LongCovidKids #Childhood #RECOVER

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Long Covid UK @longcoviduk.bsky.social · 03/06/2025

This #VolunteersWeek we say a huge ‘Thank you!’ to all our fantastic volunteers who have made our charity what it is. Nearly all have #LongCovid themselves or are care givers to someone with Long Covid. Thank you for giving your precious energy to helping so many others. 💖💖💖

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Long Covid UK @longcoviduk.bsky.social · 03/06/2025

👀 We’re keeping track of the amazing George Brill, who is fundraising for our charity by walking Lands End to John o’Groats! Day 72: 108 km in 30 hours Two sunrises & the English 3000s Read more about George’s #LongCovid challenge on the link below! ⬇️ Go George!! 💖 #ForThoseWhoCant

Photo of a lake and surrounding grass. Text on the photo reads georgebrill_ 5h Added to End-to-End 6 Day 72 108km 30 hours, two sunrises, and the English 3000s
Sun and glorious scenery by day
Endless rain and gale force winds by night

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Nicole Filippone, Autistic Advocate & Author @nicolefilippone.bsky.social · 02/06/2025

Just an FYI, if someone tells you they're disabled and they don't look like they are... the chances of them lying about it are way smaller than the chances of you just not understanding how hidden disabilities work. Hope that helps.

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Lydia, 34 @lydiafd.bsky.social · 01/06/2025

Good advice on how to avoid covid during the upcoming surge - predicted to peak the end of June! @cleanairie.bsky.social @hselive.bsky.social @oireachtasnews.bsky.social @irishexaminer.bsky.social @irishtimes.com @intonews.bsky.social @lcaireland.bsky.social @meactnet.bsky.social

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Tania J. Spencer @taniaspencer.bsky.social · 31/05/2025

1/ "In conclusion, this group of articles points to the global impact of long COVID as well as the varied complications from the condition": www.frontiersin.org/journals/med...

frontiersin.org

Frontiers | Editorial: Long COVID: pathogenesis, diagnosis and clinical management

Five years have passed since Coronavirus disease 2019 (COVID-19) rapidly spread worldwide, causing the biggest public health crisis in 21 st Century. 1,2 Whi...

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NB COVID info @nbcovidinfo.bsky.social · 31/05/2025

Registration is over half full, so register soon if you’re thinking about coming on Tuesday!

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Long Covid Advocacy Ireland-LCAI @lcaireland.bsky.social · 25/05/2025

🔔REMINDER - TONIGHT🔔 Join us tonight at 7pm for our monthly online support meeting for spouses/partners & parents. Those on our mailing list will have received the link or you can email us to request it at longcovidadvocacyireland@gmail.com #LongCovid #pwLC #SpeirGorm #SpéirGorm #LongCovidSupport

media.tenor.com

a cartoon of three penguins hugging each other with the words group hug written on the bottom

ALT: a cartoon of three penguins hugging each other with the words group hug written on the bottom

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Solve M.E. @solveme.bsky.social · 20/05/2025

It's National Clinical Trials Day! Click the link below to learn about some of the #MECFS and #LongCovid clinical trials we’re watching now, and consider joining those that are right for you. ow.ly/8jYa50VVSoB #MECFS #LongCovid #ClinicalTrialsDay

A square graphic with a blue background and light yellow text reads: "May 20th is National Clinical Trials Day! ME/CFS and Long Covid Clinical Trials to Watch. Learn more about how you can join! " An illustration depicts a woman in a lab coat holding a clipboard and beaker and surrounded by scientific lab tools including test tubes and a microscope. She is surrounded by images of cells under a microcsope and a DNA double-helix.

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Long Covid Advocacy Ireland-LCAI @lcaireland.bsky.social · 22/05/2025

🔔REMINDER🔔 Online support meeting for spouses/partners & parents is this coming Sunday 25th May at 7pm. Those on our mailing list will receive the link or you can email us to request the link. #LongCovid #pwLC #SpeirGorm #SpéirGorm #LongCovidSupport

media.tenor.com

a cartoon penguin is holding a sign that says you are not alone

Alt: a cartoon penguin is holding a sign that says you are not alone

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Kelly @broadwaybabyto.bsky.social · 21/05/2025

If you can’t afford a respirator, look for a local mask bloc. These are volunteer organizations committed to helping people access the best protection they can. If you CAN afford it, consider donating to them as well! maskbloc.org

maskbloc.org

Worldwide Mask Bloc Directory – Find your local Mask Bloc

MaskBloc.org lists active Mask Blocs around the world. Free high-quality masks, COVID-19 tests and other equipment for your community. Mutual Aid & We Keep Us Safe.

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Canadian Covid Society @covidsociety.ca · 21/05/2025

People facing the fight of their life shouldn’t have to worry about fighting Covid, too. #HealthCareNotHealthCareless

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Clean Air Advocacy Ireland @cleanairie.bsky.social · 20/05/2025

"We have the tools to reduce the number of infections in schools, but we are simply not using them properly, or at all." We have issued this press release in response to the "highly alarming" school absence figures (from 2022-23) released yesterday by the Minister for Education.

Page one of the press release reads as follows:

PRESS RELEASE - FOR IMMEDIATE RELEASE
ISSUED 19/5/2025
by CLEAN AIR ADVOCACY IRELAND
~ BEGINS ~
Clean Air in Schools could boost Attendance
● Illness is the leading cause of School Absence in Ireland
● Fall in Attendance Shows Need for Urgent Action on Clean Air in
Schools
The recent School Attendance report from Tusla shows a dramatic increase in school
absence, and is an urgent warning sign which should not be ignored by the Department of
Education. The high level of absenteeism is being driven by illness, and this should trigger
immediate action to improve indoor air quality in schools to reduce the spread of common
airborne infections such as flu, RSV, and Covid-19.
Illness consistently accounts for around 60% of absences in schools, and that remains the
case in the latest report for the 2022/23 school year, with illness accounting for 61% of
known absences from Primary Schools and 59% of known absences from Secondary
Schools.
In the 2022/23 school year, absences from Primary Schools were 46% higher than the
18-year average from 2003 to 2019. Absences of longer than 20 days are 128% higher than
the same 18-year average in Primary Schools, and 43% higher in Post-Primary Schools.
Clean Air Advocacy Ireland is calling on the Department of Education to implement
guidelines for schools to manage the air quality in indoor spaces such as classrooms,
canteens, staff rooms, and toilets. Improving indoor air quality through monitoring, ventilation
and filtration has been shown to effectively reduce the transmission of common airborne

Page 2 of the press release reads as follows:

...illnesses. We have the tools to minimise airborne pathogens and reduce the number of
infections, through mechanical ventilation and air filtration, but we are simply not using them
properly, or at all.
There is also existing legislation in Ireland which governs indoor air quality in workplaces,
and schools are places of work for teachers, assistants, and other support staff. Employers,
including school boards, have a legal obligation to monitor indoor air quality and to
implement changes where the air quality is below acceptable levels.
Kieran Ryan, a member of Clean Air Advocacy Ireland, says the Tusla school attendance
report indicates that something is going badly wrong in terms of sickness levels in Irish
schools.
“If we’re talking about increased absences in schools then we need to address the elephant
in the room, which is an overall increase in illness at a population level. As well as common
illnesses such as RSV and seasonal flu, Covid-19 has now added to the burden of illness
faced by students, parents, and teachers.”
“We know that many of these illnesses are spread via airborne transmission, so when
children are packed into poorly-ventilated classrooms sickness spreads like wildfire. Infected
children then bring the illness back to their own homes, and this seeds the further spread of
illness within the community. If we can reduce transmission in schools, then we can reduce
the overall burden of disease within our communities. It’s a win-win.”
“It is not the duty of school principals or teachers to be their own public health experts or
ventilation engineers: They must be given effective guidance & resources by the Department
of Education to ensure that the indoor air quality in schools is safe. The Department is failing
school employees and students by not issuing such guidance or resources.”
~ ENDS ~

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Long Covid Advocacy Ireland-LCAI @lcaireland.bsky.social · 20/05/2025

🎯 A powerful statement from @cleanairie.bsky.social - it’s time for the Dept. Of Education to implement the tools we have and promote clean air in #schools #SpeirGorm #SpéirGorm #cleanairireland #longcovid #publichealth

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Lydia, 34 @lydiafd.bsky.social · 19/05/2025

An incredibly poor "opinion piece" that should not have been published by @bmj.com. Repackaging CBT and GET again as treatment is harmful and detrimental to ME/CFS patients. @paulgarnerwoof.bsky.social propagating his dubious beliefs does nothing but undermine the ME/CFS and Long Covid community.

bmj.com

Patients with severe ME/CFS need hope and expert multidisciplinary care

Reframing beliefs about illness, along with specialist rehabilitation, can help recovery in people with severe ME/CFS, write Alastair Miller, Fiona Symington, Paul Garner, and Maria Pedersen Myalgic...

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Tom Kindlon @tomkindlon.bsky.social · 17/05/2025

Thanks to my mum for getting everything ready for our family #TeaPartyForME2025 on #BlueSunday (tomorrow) 👍 We’re doing it in aid of @irishmecfsassoc.bsky.social www.idonate.ie/event/BlueSu... but other worthy charities are available (see: the-slow-lane.com/donation-pag... ) #MEcfs #CFS #PwME

Photo of a table decorated and ready for a tea party

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ME Association @meassociation.org.uk · 18/05/2025

Show us what you've been doing for Blue Sunday! Share with us your Blue Sunday par-teas; whether you're planning to wear blue pyjamas, make a blue cake, or simply have a cup of tea in your fanciest mug! #BlueSunday2025 #MeAssociation #MEAwareness #pwME #MECFS #Fundraising #TeaPartyForME

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Andrea Fighting for #MECFS Diagnostic Biomarkers @mecfsnanoneedle.bsky.social · 18/05/2025

Today is Blue Sunday for #MECFS Support #MECFS Biomarker projects directly. Please donate to the largest ME/CFS Biomarker study Help make a ME/CFS diagnostic test a reality tinyurl.com/BlueOMFBioQu... #pwME #MillionsMissing #BlueSunday

This Blue Sunday for ME/CFS
Support ME/CFS Biomarker Projects

Picture of blue and white teapot and cup and saucer

Donate OMF BioQuest
1200 Samples (600 ME/CFS Samples)
Analyzing 10,000 Proteins and Metabolites

https://tinyurl.com/BlueOMFBioQuest

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Ahimsa @ahimsa-pdx.disabled.social.ap.brid.gy · 14/05/2025

💙 Blue Sunday - 2025 💙 the-slow-lane.com/blue-sunday-2025 On Sunday, May 18, join this fundraiser for ME/CFS charities. Suggestions: * Wear something blue and have a virtual tea party. * Post photos on social media. * Donate the price you'd pay […] [Original post on disabled.social]

Blue Sunday, The Tea Party for M.E.
18th May 2025

- Wear something blue (pyjamas count!)
and/or

- Dig out your best cups and saucers
and/or

- Bake or buy your favorite cake
and/or

- Post a photo of your tea party set-up to social media
and/or

- Invite others to enjoy tea and cake with you in person, via video call, or by sharing photos
and/or

- Donate the price you'd pay in a cafe to an M.E. charity
and/or

- Connect with others online who are doing the same by commenting on their posts.

Do one, a few, or all, to show your support for the M.E. community.

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Reposted by Long Covid Advocacy Ireland-LCAI

Katharina 🦋🍋🍀 @katha1970.bsky.social · 13/05/2025

“Long Covid and ME/CFS cost the German society more than all natural disasters in Germany of the past years combined - every year!” Joerg Heydecke from the ME/CFS Research Foundation @mecfsresearch.bsky.social at the #MECFSSymposium2025

Chart from a talk by Joerg Heydecke from the ME/CFS Research Foundation at the ME/CFS Symposium 2025, title: “Long Covid and ME/CFS cost [the German] society more than all natural disasters in Germany combined - every year!”

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 13/05/2025

“It can be predicted that 30,000 people will be newly diagnosed with #MECFS in Germany this year.” Joerg Heydecke from the ME/CFS Research Foundation @mecfsresearch.bsky.social at the #MECFSSymposium2025

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Long Covid Advocacy Ireland-LCAI @lcaireland.bsky.social · 12/05/2025

💙 Blue Sunday, Sunday May 18. Help this fundraiser for Irish ME/CFS Association if you can - for Information, Support & Research. #pwME #pwLC #SpeirGorm #SpéirGorm #MEAwarenessDay #MEAction #Ireland #longCovid #PEM #MEFundraiser @irishmecfsassoc.bsky.social #MedSky #LCSky

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Tom Kindlon @tomkindlon.bsky.social · 11/05/2025

I actually deteriorated over time, through following exercise, like many others with #MyalgicEncephalomyelitis. Improving or even stabilising is not the only possible outcome following an infection. Plenty of research shows a significant % of those with #LongCovid satisfy ME/CFS criteria 1/

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Emerge Australia @emergeaustralia.bsky.social · 12/05/2025

Powerful moment at Sir Bob Geldof's event: Belinda & Brooke Nickeas (ME/CFS community) shared a letter outlining the history of ME/CFS. Touched by their courage, he shared these words 💙 On #MECFS Awareness Day, their act is a gift. You are seen. You matter.

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Naomi Harvey PhD @naomidharvey.bsky.social · 12/05/2025

This is my SOS 🆘 I’ve had ME/CFS since I was 15 and since 2022 I have been Severe, in the 25% who are house or bedbound. It’s frightening and awful and we have no help or dedicated medical care. We need help, this is my SOS 🆘 #DisabilitySOS #MillionsMissing @meactnet.bsky.social

An SOS drawn with a finger on a white background using a paint App on a phone with an image saying #MillionsMissing udnerneath

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Long Covid Advocacy Ireland-LCAI @lcaireland.bsky.social · 12/05/2025

Q: How can #ME be diagnosed? A: The ME International Consensus Criteria, see the #MEICC poster below for more details 👇 #MEAwarenessDay #MECFS #pwME #pwLC #SpeirGorm #SpéirGorm #MEAction #LongCovid #PEM #MEawareness

ME International Consensus Criteria 2011 - how to diagnose ME

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Long Covid Advocacy Ireland-LCAI @lcaireland.bsky.social · 12/05/2025

Our lovely team has created some gorgeous posters for #MEawarenessday today. Let’s spread the word! #ME/CFS #PEM #SpeirGorm #SpéirGorm #pwME #pwLC #PublicHealth #LongCovid

ME Awareness Day 12th May. Long Covid Advocacy Ireland stands in solidarity with everyone living with Myalgic Encephalomyelitis (ME)

What is ME? Poster includes definition of Myalgic Encephalomyelitis and list of symptoms such as extreme fatigue, cognitive issues etc.

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Long Covid Advocacy @longcovidadvoc.com · 12/05/2025

Today is #MEAwarenessDay 🐋 Let's take a deep dive into what ME is and 😇 Why allyship is so important 1/15

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Long Covid Advocacy Ireland-LCAI @lcaireland.bsky.social · 12/05/2025

🔔 Reminder Tonight 7pm 🔔 Very aptly on this #MEAwarenessDay 💙 we’re hosting our online support meeting for patients (& parents), 7pm via zoom. If you're not on our mailing list, pls contact us at longcovidadvocacyireland@gmail.com to receive link. #LongCovid #pwLC #Ireland #SpeirGorm #SpéirGorm

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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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Irish ME/CFS Association @irishmecfsassoc.bsky.social · 10/05/2025

10/ May is #MyalgicEncephalomyelitis (M.E.) Awareness Month. You can help by sharing this documentary, "Invisible". It's a 60-minute documentary made in 2009 (but is timeless) [Skip forward to 14:50 to go to the start of "Invisible" proper] cctv.org/watch-tv/pro... Day 10 #MEcfs #PwME

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Esther @elhopkins.bsky.social · 10/05/2025

petition.parliament.uk/petitions/70... Please can you sign and RT this petition. We urgently need improved indoor air quality to protect vulnerable & all patients and staff in healthcare & care home settings. Remember many aren’t able to be vaccinated due to health conditions & many unable to 🧵

petition.parliament.uk

Petition: Introduce new air quality and PPE rules for health and social care settings

We want the Government to set new rules on air quality and infection control in health and social care settings, to prevent and control airborne infections, with new ventilation and filtration require...

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