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Long Covid Advocacy

@longcovidadvoc.com

16K followers 5.3K following 1.6K posts

A non-profit social enterprise dedicated to people with Long Covid + ME. Shifting the paradigm one step at a time... 💙📚Home to the #pedanticzebra book club. https://www.longcovidadvoc.com/ 🛍️ https://longcovidadvoc.shop/

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Long Covid Advocacy @longcovidadvoc.com · Apr 22

👋 Welcome to our Master Thread 🧵
We’re here to shift the paradigm for #LongCovid + #ME 🖖
This is our low down in what we do, what we offer and why it matters.

Our 1st principles:
⚖️ Legislate
🔍 Investigate
💨 Ventilate
📚 Educate

Let’s go 👇 1/18

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Long Covid Advocacy @longcovidadvoc.com · 7h

Thank you for highlighting this. It is genuinely chilling & demonstrates how pervasive the denial of children's reality of complications with COVID was/is at the highest levels of influence.

Appalling

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Long Covid Advocacy @longcovidadvoc.com · 7h

TW - distressing

But it shows the level of hubris, privilege, denial & fabrication that exists in the higher echelons of power

The Royal Colleges have been historically deeply problematic with ME

To witness the same with vulnerable children to Covid is on form but v disturbing
@rcpch.bsky.social

Clinically Vulnerable Families 💙💜💗 @cvcev.bsky.social · 11h

Professor Steve Turner, President of the Royal College of Paediatrics and Child Health (@RCPCHtweets) @SteveTurnerABDN.

"children, mercifully, were spared from the harm of that came from Covid. Even my most sick patients .... it was their parents who were unwell...."

1/

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Long Covid Advocacy @longcovidadvoc.com · 15h

⚡ Important thread by fearless community champion George Monbiot!

Highlighting the very real consequences of Simon Wessely's campaign to deny vulnerable people care.

Neurodiverse people are now in the firing line 😕

👀 One to read

George Monbiot @georgemonbiot.bsky.social · 22h

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...

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

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Long Covid Advocacy @longcovidadvoc.com · 15h

Thank you George for your advocacy 🙏

Wessely is wheeled out ad infinitum by governments to save them money.

In 1989 he was a founder member of 'The Campaign Against Health Fraud' that opposed unnecessary treatments for 'non-existent diseases'.

It's devastating to see neurodiverse people targeted

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Long Covid Advocacy @longcovidadvoc.com · 16h

Science Media Centre can't resist poisoning the well with pulling CFS overlord Alistair Miller from retirement 😐
www.sciencemediacentre.org/expert-react...

expert reaction to study of blood based diagnostic biomarkers for ME/CFS | Science Media Centre

www.sciencemediacentre.org

Long Covid Advocacy @longcovidadvoc.com · 16h

Sky news - please don't use CFS as a headline!!!

news.sky.com/story/scient...

Scientists develop first-ever blood test to diagnose chronic fatigue syndrome

CFS is a disabling illness characterised by extreme fatigue that is not relieved by rest.

news.sky.com

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Long Covid Advocacy @longcovidadvoc.com · 16h

The Guardians take:

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

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Long Covid Advocacy @longcovidadvoc.com · 16h

This is a proof of concept study, which the authors state.

The PR machine is on full flow though!

It's good to see media pick up as it shifts to a biological narrative & that the news is interested.

It's early days though!

Will link the media 👇 /8

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Long Covid Advocacy @longcovidadvoc.com · 16h

One issue is that EpiSwitch® is a proprietary platform.

The licence, training & accessibility needs to be opened to be reproducible in independent labs & for clinical translation. /7

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Long Covid Advocacy @longcovidadvoc.com · 16h

Clarifying whether this is machine learning over fitting is needed.

It's a very high dimensional relative to a small sample size, 200+ marker panel from 850K+ tested sites /6

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Long Covid Advocacy @longcovidadvoc.com · 16h

Pathways that have shown up in previous research are highlighted,
IL-2, TNF/NF-κB, TLR, JAK/STAT,

but so far this could be correlation not causation.

It's a potential signal though for a biomarker & treatment /5

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Long Covid Advocacy @longcovidadvoc.com · 16h

The test needs external validation, as the 'independent validation' is internal to the study.

So, we need a larger independent lab to take on replication.

Replication is vital to ascertain a biomarker. /4

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Long Covid Advocacy @longcovidadvoc.com · 16h

This sick vs healthy case control needs fine tuning to see if the test stands out against other fatiguing & inflammatory conditions like MS & Lupus.

It needs a differential diagnosis test.
/3

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Long Covid Advocacy @longcovidadvoc.com · 16h

It's a very small sample
- 47 severe #pwME, 61 controls
It's great to see severe patients included but next step is to include a more diverse cohort that's representative of the ME population.
/2

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Long Covid Advocacy @longcovidadvoc.com · 16h

Media flurry about the biomarker test for ME. 🧪

It's a promising discovery stage study but what needs to be done to turn this into a validated biomarker?! 🧵
🖇️
translational-medicine.biomedcentral.com/articles/10....

Infographic titled “ME Biomarker Claims” with a header “Latest Research.” Image shows test tubes, one filled with red liquid as a pipette adds a drop, symbolizing biomedical testing. Text summarises: researchers using EpiSwitch® found immune-linked chromatin markers distinguishing ME/CFS patients from controls, but small sample size and limited validation make biomarker claims premature. Footer credits Long Covid Advocacy and cites Hunter et al., Translational Medicine (2025).

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Long Covid Advocacy @longcovidadvoc.com · 18h

The pressure is working. Labour MPs calling for a rapid review of JCVI's Covid vaccine eligibility

Write to your MP with CEV's easy template 👇
www.clinicallyvulnerable.org/post/labour-...

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Long Covid Advocacy @longcovidadvoc.com · 1d

In Elsevier's textbook 'The Scientific Basis of Fatigue' this inaugural chapter is a meaningful step forward academically for #ME

Co-authored by @exceedhergrasp1.bsky.social & folk from @batemanhornecenter.bsky.social it brings in the new paradigm we need in medical education.

👏👏👏 Well done all!

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Reposted by Long Covid Advocacy

Adam @abrokenbattery.bsky.social · 3d

On LBC, callers Ann and Annie told Natasha Devon that the rise in long-term sickness is linked to long Covid — and compared the lack of support to what people with #MECFS have faced for decades (10 mins)

youtu.be/BoVpKmsTNFY?...

Natasha Devon - Long-term sickness call in

YouTube video by Broken Battery

youtu.be

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Long Covid Advocacy @longcovidadvoc.com · 5d

💙📚 Our autumn read is 'Awakened' by @tinywriterlaura.bsky.social

Elliot shows her dedication to ME representation by including it on page 1 with this cracking quote.

One that many of us can relate too 🖤

#pedanticzebra #booksky

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Long Covid Advocacy @longcovidadvoc.com · 5d

😷 Amazing @specsaversuk.bsky.social ! Booked an at home eye test - requested to be told if anyone was symptomatic.

A lovely lady said the opticians carry masks & OFFERED that they mask!

In shock!
Respect • Protection • Validation
It's not that hard!

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Long Covid Advocacy @longcovidadvoc.com · 5d

Having the engagement, support & time of the front bench would certainly help!
👉 So children, families and all are protected from the serious ongoing effects of infection.

👋🌊
@ashleydaltonmp.bsky.social
@rthonwesstreeting.bsky.social

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Long Covid Advocacy @longcovidadvoc.com · 5d

🙌 It was reassuring to be part of a National Stakeholder Meeting with @johnmcdonnellmp.bsky.social today with a:
👉 full, fabulous room of brilliant advocates
👉 expertly led by Dr Rae Duncan.

Key issue - how do we overcome the bureaucratic refusal to act on reducing the risks of Covid?

💡Ideas?!

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Long Covid Advocacy @longcovidadvoc.com · 6d

*on the ground!

Long Covid Advocacy @longcovidadvoc.com · 6d

Simon Wessely doing what he does best:

👉 Saving the government money by giving authority to manipulating diagnoses so benefits, care & responsibility can be avoided.

The reality of the ground of trying to get dx/care for ADHD/ASD is a nightmare

www.pslhub.org/blogs/entry/...

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Long Covid Advocacy @longcovidadvoc.com · 6d

Thank you too Lara Wong for modelling a quality mask to keep you and others safe.

She was clearly heard(no mumbling!), advocated brilliantly & represented the normalisation of 😷 in a place of authority.

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