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Katie As

@katieas.bsky.social
439 followers 875 following 407 posts

🏳️‍🌈💙pw/ME #LwiththeT arty activist MyalgicE -Still Masking 😷 (I have left the other place permanently, please interact with me here!)

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Reposted by Katie As
Dr Nicola Clague-Baker @claguenjc36.bsky.social · 19h
Talks to university physio courses about #ME/CFS and #LC now include: Liverpool, Northumbria, Sheffield and next week Central Lancashire. Added a discussion about the difference between ME, LC and FND. MSc and BSc students and next advanced practitioners. @physiosforme.bsky.social
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Prof Ros Gleadow FAA 💙💚 @rgleadow.bsky.social · 01/10/2026
Has anyone ever followed up a link between Cardiolipin antibodies and ME? They are found on mitochondrial membranes. Wikipedia refers to 2009 paper showing 95% of CFS patients have anti-cardiolipin antibodies. Link in first comment. #MEcfs #cardiolipin en.wikipedia.org/wiki/Cardiol...
en.wikipedia.org
Cardiolipin - Wikipedia
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Lucibee @lucibee.bsky.social · 24/09/2026
Basically, the ME/CFS clinics that do exist are a law unto themselves. There is no accountability. No checks to make sure they are sticking to the guidelines (which are the bare minimum anyway). That's how clinics like North Bristol still get away with offering GET under the auspices of "rehab":
nbt.nhs.uk
M.E./CFS Rehabilitation Checklist | North Bristol NHS Trust
What is rehabilitation? The World Health Organisation has defined rehabilitation as: “A process aimed at enabling people to reach and maintain their optimal physical, sensory, intellectual, psychologi...
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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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Alem Matthees @alemmatthees.bsky.social · 23/09/2026
For the love of the universe and the sake of millions of people with #MECFS and #LongCOVID can some funding body please fund the rest of #SequenceME / LC already?! WGS is one of the greatest crowning achievements of science and has enormous potential for pointing the compass in the right direction.
actionforme.org.uk
Sequence ME & Long Covid
SequenceME & Long Covid is a major new whole-genome sequencing study to understand ME and Long Covid.
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George Monbiot @georgemonbiot.bsky.social · 24/09/2026
With great thanks to the hundreds of people who gave me their testimonies. If I hadn't said "stop" after a few hours, it might have been thousands. The sheer scale of this scandal is hard to get your head around. 2/2
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Katie As @katieas.bsky.social · 24/09/2026
Good to see a post by Alem. I have never been as very severe as he has, but sort of this applies to moderate-severe as well. The impact over decades makes it a very particular cumulative experience that cannot be accessed for a day or even a year.
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Katie As @katieas.bsky.social · 24/09/2026
George has done it again. Thank you @georgemonbiot.bsky.social
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Katie As @katieas.bsky.social · 22/09/2026
When will things change?! #SevereME
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Reposted by Katie As
Steve Fifield @stevefifield.bsky.social · 19/09/2026
I’ve just donated to Justice4ME. Over a year since the ‘Final Delivery’ plan for ME was published yet still: - Most NHS think we’re just a bit tired - We aren’t getting better - No treatments - Services cut - No public awareness - Barely funded - Severe ME patients still being harmed justice4me.uk
crowdjustice.com
NHS care for ME now
Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.
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Steve Fifield @stevefifield.bsky.social · 30/08/2026
A great loss 😢 “Her research was not restricted to arthritis – it ranged far and wide on conditions such as Duchenne muscular dystrophy, and when she died she was investigating the origins of myalgic encephalomyelitis (ME/CFS)” 🙏💙🙏💙🙏 #pwME #pwLC
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Dr Noor Bari @njbbari3.bsky.social · 29/08/2026
Holy …. www.cidrap.umn.edu/covid-19/1-4...
cidrap.umn.edu
1 in 4 infected UK healthcare workers developed long COVID, report shows
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🔬🔭🧭👨‍💻🏞️👾🤖🌡️ @dcrinyyc.bsky.social · 30/08/2026
It's a pretty grim report.
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Mirja Nicolas @privilegienschreck.bsky.social · 16/08/2026
"So habe ich meine ME/CFS geheilt."
 … Wie ich irreführende und schädliche Genesungsgeschichten gesellschafts- und machtkritisch einordne und warum diese keinen Widerspruch zur Forderung, Erfahrungswissen anzuerkennen, darstellen, jetzt auf dem Blog:
gratis-3958020.webador.de
Wie geht man mit missionierenden Recoverees um? / Artikel | Waldmeer | ME/CFS
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Jess O'Thomson @jessothomson.co.uk · 15/08/2026
We are writing to the Prime Minister, and the Culture Secretary Lisa Nandy, calling for an immediate public inquiry into the British press, following the tragic death of Jason Arday. Sign here 👇
goodlaw.social
Jason Arday Letter | Good Law Project
Commission an immediate public inquiry into how to ensure a responsible press given its contribution to Dr Arday’s tragic death.
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Katie As @katieas.bsky.social · 15/08/2026
Sharing but disagree it’s just the right wing press. Racism (and ableism) is everywhere and we do not need the Left sanitising that.
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Reposted by Katie As
ME Research UK @meresearchuk.bsky.social · 04/08/2026
A team of researchers recently published a manuscript in Nature Communications highlighting that muscle problems in long COVID and ME/CFS cannot be explained by prolonged inactivity. Press release: tinyurl.com/3zrppbuw ME Research UK is acknowledged as one of the funders.
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Germaine Hypher - Crafting A Path Through Illness @germainehypher.bsky.social · 11/08/2026
My contribution to the Forget M.E. Not collective quilt project. I had to keep the embroidery to a minimum as I’m not currently able to sew much so I incorporated appliqué into my design. #embroidery #handsewing #appliqué #CraftSky #invisibleillness #mecfs #ME/CFS #chronicillness #chronicfatigue
On blue fabric, a STOP road sign is depicted using red appliquéd fabric in an octagon shape with white backstitching for the border and lettering. Next to this are two embroidered pale blue forget-me-not flowers. Black text reads:

The stop sign represents all the times throughout my life, since childhood, M.E has stopped me from doing things - the dreams it has a put a stop to, the daily activities it has stopped me from doing, and the hours of every day that I have to stop and lie flat with eyes shut. It also asks healthy people looking at this design to stop for a moment to appreciate their abilities and to understand a little more about this often
misunderstood condition.Black text reads:

The forget-me-nots growing around the sign ask the world not to forget that so many of us are here, doing our best to live with a severe illness that needs better research and understanding. They also represent my personality, calling out from underneath the symptoms to not be forgotten when this illness often hides who I feel myself to be.
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sarah boothby @swastrosarah.bsky.social · 10/08/2026
petitions.senedd.wales/signatures/2... Please sign and share. You do not have to be resident in Wales to show your support. #pwME #LongCovidME
petitions.senedd.wales
Petition: Take urgent action so those with Severe Myalgic Encephalomyelitis in Wales are no longer left without vital medical care
Service provision for people with Myalgic Encephalomyelitis (ME) remains inconsistent across Wales. In particular, major concerns persist regarding access for those with the severe form of the conditi...
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Adam @abrokenbattery.bsky.social · 09/08/2026
Forward ME has published proposals for urgent improvements to the care of people with very severe #MECFS. It highlights two Prevention of Future Deaths reports and that delays to do not remove the need to address immediate patient safety risks. #SevereMEAwarenessWeek
• Introduce a patient safety improvement programme aimed at eradicating preventable harms, ensuring
that avoidable deaths become ‘never events’ (see 3.1.1 for details);
• Develop comprehensive national guidance for the management of very severe ME, including nutritional
failure, applicable to both hospital and community settings. If requested by the DHSC, Forward ME can
convene an expert panel of clinicians to commence this work;
• Establish a national NHS clinical support group on very severe ME, consisting of clinicians who have
experience of working with people with very severe ME, to provide an escalation pathway for complex
cases and to support national care quality improvements (see 3.1.3 for details);
• Ensure that the template service specification under development includes robust advice for ICBs on
caring for people with very severe ME and that ICBs are strongly encouraged to put these measures in
place (see 3.1.4 for details); and
• Establish workforce education measures to improve the uptake of NHS e-learning modules among
medical staff caring for people with very severe ME.
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Lucibee @lucibee.bsky.social · 08/08/2026
Just seen this posted on MEA's FB page: A Message from the Chair of Forward ME - 8 August 2026 forward-me.co.uk/a-message-fr...
forward-me.co.uk
A Message from the Chair of Forward ME – Forward ME
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Katie As @katieas.bsky.social · 08/08/2026
Great report. It must be seen widely and we need people within all systems to join us in demanding actual services for safe medical and social care (and education). #DoYouSeeMENow
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Katie As @katieas.bsky.social · 07/08/2026
itsmadeforme.wordpress.com I came across this blog about adapted and suitable clothing for people with #SevereME
itsmadeforme.wordpress.com
itsmadeforme
Visit the post for more.
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Reposted by Katie As
World Health Network @thewhn.bsky.social · 06/08/2026
COVID levels may be lower right now, but this is exactly when prevention can make the biggest difference. Wastewater data shows that COVID often follows a pattern of major seasonal waves. By layering protections early, wearing N95s, improving indoor air, (...)
White World Health Network campaign graphic with bold black and yellow text. Top left: “whn.global.” Top right: “World Health Network — Science for a safer, healthier world.” Main headline: “A summer COVID wave isn’t inevitable.” Supporting text: “Early precautions can prevent or reduce the impact of a summer surge.” A yellow banner reads: “Don’t make waves campaign.” A yellow circle with a simple wave icon appears at the bottom right.White World Health Network campaign graphic with bold black and yellow text. Top left: “whn.global.” Top right: “World Health Network — Science for a safer, healthier world.” Main text: “Prevention strategies that work, especially when you apply them together:” Six yellow boxes list: “Wearing N95s,” “Opening windows,” “Running HEPA filters,” “Testing regularly,” “Getting vaccinated,” and “Staying home when sick.” A yellow circle with a simple wave icon appears at the bottom right.
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World Health Network @thewhn.bsky.social · 06/08/2026
(...) testing, and staying home when sick, we can help slow a summer surge before it builds. Join WHN’s Don’t Make Waves campaign and help spread the message: take precautions now to protect your community later. whn.global/dont-make-wa... #COVID #PublicHealth #Wastewater
whn.global
Don’t Make Waves: Why Now is an Important Time to Take Precautions - WHN
You might have heard that daily COVID infection rates are currently lower than during other parts of the year. Did you know that wastewater data tells us that we typically experience two large waves o...
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Frances Ryan @francesryan.bsky.social · 03/08/2026
I’m very much on the “don’t speak ill of the dead” side of civility but that doesn’t mean distorting what someone did with their life, particularly if they used their position to hurt others. Liddle was not a brilliant provocateur. He used misinformation to whip up hate against bedbound people.
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Frances Ryan @francesryan.bsky.social · 03/08/2026
As Rod Liddle has died, I notice this column I wrote in 2019 about his attacks on people with M.E. is on the most read again. Rebekah Brooks, of News UK, described Liddle today as “provocative”. In reality, he spread lies about very sick people for cash. www.theguardian.com/commentisfre...
theguardian.com
Rod Liddle vilifies disabled people. I’m tired of the hate. We all should be | Frances Ryan
Whether it is ME patients or another target, huge swathes of the media have normalised hatred of minorities for years, says Guardian columnist Frances Ryan
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Long Covid Advocacy @longcovidadvoc.com · 29/07/2026
101: Visual Summary for The Biopsychosocial Model
Infographic titled Visual 101: The Biopsychosocial Model by Long Covid Advocacy. It explains that the biopsychosocial (BPS) model considers biological, psychological and social factors in illness but argues it has often overemphasised psychological explanations. A diagram shows biology, psychology and social factors interacting. Another panel summarises George Engel's 1977 origins of the model. A flow chart describes how the model shifted from a broad framework to an explanatory model, leading to greater emphasis on psychological factors, behavioural treatments such as CBT and mindfulness, and potential patient harm. It contrasts rehabilitation-led multidisciplinary care with specialist medical care. Final panels outline why the model became popular, key criticisms (vagueness, prioritising psychology, legitimising harmful treatments and psychogenic explanations), and proposed alternatives: evidence-based biomedicine, transparency about uncertainty, more biological research, and supportive mental healthcare without blame.
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Long Covid Advocacy @longcovidadvoc.com · 29/07/2026
No.03 in our 101 series covers The Biopsychosocial Model. A vital topic as much of our clinical care is BPS. Lack of progress in care, research & treatment rests on this theory. Yet, it's a complex topic, so we have created an accessible article AND a 1-page visual summary. Link 👇
Cover image for a series titled "101: 03. The Biopsychosocial Model." Against a textured background in shades of yellow, orange and ochre, a large cracked surface dominates the image, with deep black fissures radiating from a central break, suggesting fracture or instability. In the upper left stands an engraved-style illustration of Lady Justice, blindfolded and holding a sword in one hand and balanced scales in the other. In the lower right is a small line drawing of a human head in profile with the brain illustrated in intricate detail. The title appears in dark blue text over the orange centre of the image. The overall design evokes themes of justice, critical examination and a model under strain.
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Lia Pas @liapas.bsky.social · 14/07/2026
What if movement didn't have to be big to matter? Unbound is a film woven from 20 bodies, 20 stories, and 1 thread of connection. Join us for the premiere on July 29th at 6:30 PM ET. www.eventbrite.com/e/unbound-gl... A reflection on my process for this film on my blog: liapas.com/2026/07/11/u...
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Dr Kate Cushing @drkatecushing.bsky.social · 18/07/2026
& why I wish our government & @england.nhs.uk could ‘find’ the funds to install ventilation systems to provide #CleanAir in health care settings (education settings would be ideal too). Reducing deaths & morbidity of healthcare professionals, patients & carers- & Future Proof against next pandemic!
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David Eldredge @citlan.bsky.social · 30/11/2024
Video compiled by Maarten De Cock -- @mdc_martinus on Twitter from the UK Covid-19 Inquiry. covid19.public-inquiry.uk Thank you Maarten creating/editing this video! @mariesnyder.bsky.social thank you for placing this on Youtube #COVIDisAirborne youtu.be/H3Pf-l2unKk?...
youtu.be
Abundant Evidence Covid Was Airborne from the Beginning
YouTube video by Marie Snyder
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David Eldredge @citlan.bsky.social · 05/07/2026
𝗬𝗼𝘂 𝗰𝗮𝗻𝗻𝗼𝘁 𝘀𝗲𝗲 𝘀𝗵𝗮𝗿𝗲𝗱 𝗮𝗶𝗿. #Aranet4
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Andrew Gifford @andrewgiffordphoto.bsky.social · 15/07/2026
From my ME/CFS photo project ALT: colour photo of a domestic textured ceiling, where a gaggle of flies idly spiral beneath a white ceiling spot light cluster glass.photo/andrewgiffor... #MECFS #LongCovid #pwME #ChronicIllness #Photography #Heatwave #PippingHot
glass.photo
Andrew Gifford on Glass Photography Community
Andrew Gifford on Glass
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Eleanor Fielding @meownersclub.bsky.social · 15/07/2026
laughing with my daughter about #ME #ThereForME @theguardian.com #ME #Chronicillness #LC #PEM #POTS #LivesWeCannotLive #MissingMillions @meassociation.org.uk @longcovidsupport.bsky.social @nhsengland.bsky.social @thelancet.com @rcgpt.bsky.social @cgatist.bsky.social
The cartoon series is called - This Week in Disbelief

There are four boxes

Box one - two women are talking. The one of the left is asking
‘How's the brain fog!’
The woman on the right replies ‘It's a whole new world’

Box two - the women are silent - the woman on the left right looks puzzled

Box three - the woman on the right is asking ‘Are we waiting for any other thoughts....?’

Box four - both women are laughing and the one on the right is saying ‘I can't even remember what we were talking about!’

The cartoon maker is  
#FanningTheFlames
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cbme-mark.bsky.social @cbme-mark.bsky.social · 13/07/2026
Isn’t it good to know that there are people fighting on our behalf? If you have severe or very severe ME, this is urgent. If you have moderate or mild ME, it’s about your future. www.crowdjustice.com/case/justice...
crowdjustice.com
NHS care for ME now
Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.
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cbme-mark.bsky.social @cbme-mark.bsky.social · 16/07/2026
Full letter: cambridgeme.org.uk/wp-content/u...
cambridgeme.org.uk
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Katie As @katieas.bsky.social · 16/07/2026
Excellent letter!
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Katz FAFO @katgab.bsky.social · 14/07/2026
#longcovid #chronicillness are real
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Katie As @katieas.bsky.social · 02/07/2026
Is this an AI spoof?! WTF?!
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Gillian Martin @gillmartin.bsky.social · 02/07/2026
Lloyds debanks The Canary with no explanation and are currently withholding their funds. This sets a very dangerous precedent and attack on Independent media. Journalism is NOT a crime Lloyds debank UK-based media group the Canary share.google/2DymHoDyDy7j...
share.google
BREAKING: Canary debanked by Lloyds
BREAKING: Lloyds have debanked the Canary with no warning or explanation, putting the outlet in severe financial crisis
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Clinically Vulnerable Families 💙💜💗 @cvcev.bsky.social · 01/07/2026
🚨 WARNING: As of Monday, wearing a mask at a protest is a criminal offence in England & Wales. This is now the law. 🧵 on what this means for Clinically Vulnerable people... 1/ #ProtectVulnerableProtesters
Image of a masked protester

#ProtectVulnerableProtesters
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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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ME/CFS Research Foundation @mecfsresearch.bsky.social · 23/06/2026
2025 update: For the first time, ME/CFS causes higher societal costs than Long COVID. 32.8bn € ME/CFS, 31.6bn € Long COVID. The reason: many Long COVID patients develop ME/CFS, and recovery rates are extremely low. Report: t.ly/QeMez
The image displays text describing the shift in annual societal costs between ME/CFS and Long COVID for 2025, with a breakdown of the cost figures.
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Katie As @katieas.bsky.social · 26/06/2026
This is so useful! Thanks to the creator for including vascular compressions! I feel seen 👍🏼
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Chris Ponting @cgatist.bsky.social · 05/06/2026
Final #DecodeME analysis has been stalled since 22 April when UK Biobank removed access to its compute for all users. Yesterday, they wrote again but without a timetable for re-opening, just saying that this timetable would be available in June. We will complete our analyses asap thereafter. #MEcfs
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sarah boothby @swastrosarah.bsky.social · 20/06/2026
Imho, having been part of this process since it was announced in 2022, it is far worse than a failed government initiative, though of course that is bad. Things are worse now than they were before it began.
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Long Covid Advocacy @longcovidadvoc.com · 14/06/2026
🎙️Audio version for accessibility. open.substack.com/pub/longcovi...
open.substack.com
Long Covid Advocacy at the Royal College of Psychiatrists Congress - Now!
LIVE at Congress and take part in the social media outreach
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Long Covid Advocacy @longcovidadvoc.com · 14/06/2026
www.longcovidadvoc.com/post/open-le...
longcovidadvoc.com
Open Letter: Solidarity, Engagement, and Next Steps
The response has been extraordinary. To date, the letter has received 1,200 individual signatories and the support of 58 organisations, including clinicians, researchers, patient advocates, and…
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Katie As @katieas.bsky.social · 15/06/2026
#HearOurVoices #RCPsychIC
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