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Katie As

@katieas.bsky.social
443 followers 878 following 409 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
Clinically Vulnerable Families 💙💜💗 @cvcev.bsky.social · 14/10/2026
🚨Our NEW upgraded website is live - and our new style CVF newsletter launches today! Explore our resources on cheaper private vaccines, clean air, and schools, plus reports and our Covid Inquiry work. Visit, subscribe & share: www.clinicallyvulnerable.org?from=x-launch #ClinicallyVulnerable
clinicallyvulnerable.org
Clinically Vulnerable Families – UK support and advocacy
Clinically Vulnerable Families supports, informs and speaks up for Clinically Vulnerable households across the UK with evidence, campaigns and practical help.
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Long Covid Advocacy @longcovidadvoc.com · 14/10/2026
Therapy vs Persuasion - excellent analysis from Chronic Living Therapy about that Norwegian paper on manufacturing hope. chroniclivingtherapy.com/therapy-v-pe...
chroniclivingtherapy.com
Therapy v Persuasion
When Therapy Becomes Persuasion: The Ethical Dangers of Manufacturing Hope in ME/CFS A recent study from Norway looked at healthcare professionals using "psychologically and behaviourally informed…
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Esther @elhopkins.bsky.social · 14/10/2026
This is the type of messaging we need in the UK. #Covidisairborne
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Esther @elhopkins.bsky.social · 14/10/2026
I hope my old thread below might make some folks watch the covid inquiry on YouTube. Protect yourselves! Wear a respirator - ffp2/3 Open windows, Clean the air! 🧵
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Reposted by Katie As
George Monbiot @georgemonbiot.bsky.social · 14/10/2026
Palantir didn't have to evade the UK's controls on lobbyists to get astonishing, unminuted access to government ministers and officials, or even to hire them to lobby their colleagues. Why not? Because there aren't any. My column. www.theguardian.com/commentisfre...
theguardian.com
Palantir is worming its way into the British state – it’s time to curb this controversial US company’s influence | George Monbiot
Tom Watson has said ‘mob rule’ must not decide public contracts. Perhaps he should take a look at his new employer, says Guardian columnist George Monbiot
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Tom Cadwallender @tomcadwallender.bsky.social · 14/10/2026
Brambling, a winterer from Fennoscandia on the Northumberland coast near Alnmouth.
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Katie As @katieas.bsky.social · 14/10/2026
The term Fennoscandia was first used in 1898 by Finnish geologist Wilhelm Ramsay… Well, it’s about time I heard it then! (Gorgeous Brambling)
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Katie As @katieas.bsky.social · 14/10/2026
Can’t wait for this.
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Tatiana Trifan #FBLC @tatianatrifan.bsky.social · 14/10/2026
"This predisposition to double down is not unique to these clinicians, we also saw two researchers in psychosomatic medicine and invested in the BPS model, Kupferschmitt and Köllner, publish an article in Springer Nature that called: "some patients with fatigue [were] combative and reproachful""
longcovidadvoc.com
Psychologisation 101 Update
The Psychologisation Infographic is out! This was our first article in the 101 series, and you can read the updated version here, as we have since finalised our infographic process. We thought it woul...
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Reposted by Katie As
Miles W. Griffis @mileswgriffis.bsky.social · 12/10/2026
"It might be more accurate to view Long COVID not as a single disease episode but as a long term condition, punctuated by periods of remission and relapse." A BMJ opinion by Charlie Dennis and @nisreenalwan.bsky.social on defining Long COVID "recovery". www.bmj.com/content/393/...
A screen shot of a BMJ print article, reading, "Opinion: Charlie Dennis and NIsreen A. Alwan. 

If you have long covid, how can you tell if you have fully recovered? Six years of evidence and collective lived experience show us that this is not an easy question to answer. Yet if we do not define recovery, we cannot properly count the number of people living with long covid, and its present and future impact on the population’s wellbeing, economic productivity, and health systems.

Long covid remains a substantial global health problem. A recent report estimated that this condition will cost countries in the Organisation for Economic Cooperation and Development (OECD) $11bn (£8.3bn; €9.6bn) a year in healthcare costs over the next decade. The projected economic costs are $135bn a year.1

Since the start of the pandemic, clinicians, researchers, and health organisations have devoted substantial effort to defining and measuring long covid. In 2020, one of us (NAA) proposed that long covid be defined largely by what it is not: recovery from acute covid-19.2 This approach was reflected later in the World Health Organization’s definition, which describes long covid (post-covid-19 condition) as a condition following confirmed or probable SARS-CoV2 infection with symptoms that persist for at least two months, and cannot be explained by alternative diagnoses.3

Seven years into this pandemic, however, a critical question remains largely underexplored: what does it mean to be recovered from long covid?

Initially, recovery seems self-evident: a person’s eventual return to their pre-infection health status, albeit months or years later than expected. Yet the lived experiences of people with long covid challenge this assumption. Long covid is characterised by fluctuations, relapses, new symptoms developing, and periods of apparent improvement, all of which make it far harder to distinguish genuine recovery from temporary remission.456

A striking feature of the literature on lo…fails to differentiate between relatively brief symptom remittance and true long term recovery. This lack of precision matters. If we can’t separate people experiencing a temporary remission from those who’ve fully recovered, then public health estimates of disease burden will become unstable and difficult to interpret. It also obscures the lived reality of patients whose health might cycle unpredictably between improvement, the hope of recovery, and the return of symptoms.

Moreover, as we move into an age of research being done in partnership with patients rather than just on them, it is important to examine patients’ perspectives on recovery. Through this lens we can better understand the way changes in a person’s experience of symptoms can affect their sense of self. When people who consider themselves recovered from long covid were asked how long they were symptom-free before reaching that conclusion, their answers ranged from a few weeks to over six months.4 Such variation likely reflects the cumulative experience of relapse and people’s answers may be dependent on the overall duration of their illness: people who had long covid for longer may learn not to trust short periods of improvement and therefore recalibrate what “recovered” means to them.

One response might be to formalise recovery by using a standardised minimum duration of symptom absence. Yet even this approach runs into difficulty when reinfection is considered. Evidence from a patient led survey suggests that a majority of people who thought they had recovered from long covid experienced a return of symptoms after subsequent SARS-CoV-2 infections.10 In such cases, it might be more accurate to view long covid not as a single disease episode but as a long term condition, punctuated by periods of remission and relapse.

This raises important questions. Should we adopt the language of remission rather than recovery, as is common in other chronic conditions? This could improve conceptual clarity, but…
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RSPB @rspb.bsky.social · 14/10/2026
Today’s Autumn Arrival Spotlight is the Redpoll! 🍂 These tiny finches add a pop of colour with their red crowns and lively calls as they forage in flocks among birch and alder trees. A winter treat from the north!
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RSPB @rspb.bsky.social · 10/10/2026
On #WorldMigratoryBirdDay, today’s Autumn Arrival Spotlight is the Grey Plover! These impressive fliers migrate from the Arctic, capable of non-stop flights of 6,500 km to reach UK coastlines. Some stay for winter while others continue their journey to western Africa.
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Katie As @katieas.bsky.social · 04/10/2026
Yes test us all!
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Katie As @katieas.bsky.social · 04/10/2026
Top work.
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Dr Nicola Clague-Baker @claguenjc36.bsky.social · 04/10/2026
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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Katie As @katieas.bsky.social · 04/10/2026
Ooh, looks interesting.
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Katie As @katieas.bsky.social · 04/10/2026
That’s good too! Thank you so much and good luck with it.
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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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Katie As @katieas.bsky.social · 28/09/2026
Are there any updates on this project? It’s so very much needed.
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Katie As @katieas.bsky.social · 24/09/2026
Thank you Natasha! It helps to have people who are not in the community like you and George speak up. Rare gems, the both of you!
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Katie As @katieas.bsky.social · 24/09/2026
Yes and an uneconomical one, at that.
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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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Katie As @katieas.bsky.social · 22/09/2026
“Dysregulation” sounds ok but I’d still be wary of how they plan to address this. It could easily be unevidenced nervous system focussed behavioural stuff.
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Katie As @katieas.bsky.social · 22/09/2026
Then you click through to another page and they say “only kidding!” So they can’t even be consistent.
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Katie As @katieas.bsky.social · 22/09/2026
We just got a smart meter and this is how we were left as well! It has been sorted now.
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Katie As @katieas.bsky.social · 22/09/2026
Oh yes. I’d like to read that explicitly spelled out, for sure.
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Katie As @katieas.bsky.social · 22/09/2026
Not sure what “capital” means here. Institutional/government finance?
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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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Katie As @katieas.bsky.social · 16/08/2026
Thanks. I will.
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Katie As @katieas.bsky.social · 16/08/2026
Thanks. It is another layer of complicated especially with severe ME. I’m eating ok atm which is giving me some breathing space but it’s still worrying re the future.
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Katie As @katieas.bsky.social · 16/08/2026
Oh thanks. I’ve not heard of that clinic. I assume it’s a very long way from me! I’ll go look into it xx
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Katie As @katieas.bsky.social · 16/08/2026
Median Arcuate Ligament Syndrome. It’s a vascular compression that I have (though diagnosis is being withheld until another test also confirms it).
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Katie As @katieas.bsky.social · 16/08/2026
Sarah- Does this include discussion of MALS?
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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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Katie As @katieas.bsky.social · 16/08/2026
Not sure I have the space tbh. Sighhhh
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Katie As @katieas.bsky.social · 16/08/2026
I don’t think the bps model in its current form has a lot of use, but in an ideal form, maybe.
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Katie As @katieas.bsky.social · 16/08/2026
I’ll have a watch when I can.
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Katie As @katieas.bsky.social · 16/08/2026
That makes a lot of sense. I’m kind of confused as to why environmental factors are not bigger in chronic illness research, particularly ME. The timing of the boom in cases plus some of the Sx (chemical intolerance/mould sensitivity, family disposition etc) seem to be ignored. But, what do I know!
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Katie As @katieas.bsky.social · 16/08/2026
An opposite “trend”
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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 · 16/08/2026
That’s a sad backdrop to a good article by Chris Ponting. Our history is now so long and complex that so much is getting lost. Thanks for sharing. I’d be interested to know what he’s doing now. Probably nothing for us, like so many that move on or get “taken” by the usual bps nonsense.
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