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Long Covid Advocacy 💙 Profile picture
@LongCovidAdvoc
Aug 22, 2022 • 8 tweets • 7 min read • Read on X
Scrolly
📻 🧵 on #LongCovid on @BBCScotland
🎙️Super interview with @K8Stott @DeansKevin & @drclairetaylor
Points on #microclots, lack of Long Covid Clinics in Scotland, Katie's trip to Germany, need for Rapid Treatment Trials for #LongCovid
1/6
With @DeansKevin
Reassuring to hear interest in #microclot research in the UK 💙
/2
@drclairetaylor talking about her #LongCovidClinic in Scotland 🙏
Dr Taylor is an incredible #LongCovid ally (esp through her Twitter account too)
/3
@drclairetaylor on #POTS & #MCAS in #LongCovid
-we really need more awareness of these conditions so 👏
/4
YES - we really do need Rapid Treatment Trials for #LongCovid like there was for Covid
/5
Full Interview here 👇📻
/6
Here is the BBC article on @K8Stott trip to Germany.
Good luck Kate 🤞
🏴󠁧󠁢󠁳󠁣󠁴󠁿Thank you to @Fionasstalker & @BBCScotland for covering #LongCovid so well
🏴󠁧󠁢󠁳󠁣󠁴󠁿Interviewing the right experts
🏴󠁧󠁢󠁳󠁣󠁴󠁿Highlighting the fact that #pwLC in Scotland are struggling to obtain care and treatment.

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More from @LongCovidAdvoc

Long Covid Advocacy 💙 Profile picture
Jun 1
🧵OF KEY CONCERNS

We've now read Alan Levinovitz's WIRED piece on Long Covid.

Our concern isn't that it discusses psychological theories.

Our concern is that it repeatedly conflates criticism of evidence with creating a "climate of fear".

Those are not the same thing. /1
1️⃣ CONFUSING VALIDATION WITH EVIDENCE

The article repeatedly blurs two separate claims:

👉 Patients are genuinely ill and deserve to be believed
👉 A specific treatment is effective.

These are different questions requiring different standards of evidence. /2
Believing patients is not the same thing as endorsing treatment claims.

And demanding evidence for treatment claims is not the same thing as denying illness.

Conflating stigma helps no one in the community. /3
Read 22 tweets
Long Covid Advocacy 💙 Profile picture
Feb 24
How many fallacies can we spot in this?
Clue: ( a lot)

The equation “Pain + meaning = suffering” sounds neat.
But when applied to MEand Long C0vid it rests on multiple logical fallacies.

Let’s name them: 🧵 1/
2/ False Premise
The argument assumes:
Premorbid pain/fatigue = Illness pain/fatigue.
That is false.
Post-exertional malaise (PEM) is biologically distinct from normal exertional fatigue. The premise collapses before the equation even starts.
3/ False Equivalence
“High performers used to push through pain, now they don’t.”
Training fatigue ≠ PEM.
Ordinary soreness ≠ immune-metabolic crash.
Treating them as equivalent is a category error.
Read 11 tweets
Long Covid Advocacy 💙 Profile picture
Jan 19
1/ In response to Emily Mendenhall’s recent Substack on critiques of her book Invisible Illness by the community & Wessely's legal threats.

Anthropology is often open to dialogue & critique, so let’s situate this moment historically & structurally. 🧵
open.substack.com/pub/emilymende…
2/ First, psychologisation has never meant “imagined” or “not real" or "mentally pure". Historically (hysteria: wandering wombs, reflex theory, animal spirits), mind–body integration was how suffering without visible pathology was contained & often delegitimised.
3/ Critics raising concerns about psychologising aren’t insisting on dualism. They’re pointing to how integrated models have been used to manage uncertainty & dissent, rather than actually resolve the biology of the illness.
Read 14 tweets
Long Covid Advocacy 💙 Profile picture
Dec 6, 2025
1️⃣ Visible Health has launched a local clinical trial feature. One of the first surfacing to users is an ACT (Acceptance & Commitment Therapy) trial led by Trudie Chalder, a researcher whose work has been highly controversial in ME. This raises important patient-safety concerns.
2️⃣ Chronic illness patients, especially ME and Long Covid, have a long history of harm from behavioural framing, invalidation, and psychological treatment paradigms being presented as disease-modifying. For many, this is not theoretical. It is lived trauma.
3️⃣ Visible currently pulls trials automatically from & displays them directly in the app without contextual notes. Ethics-board approval is not a guarantee of clinical appropriateness for a vulnerable illness population

User experience (UX) design mattersclinicaltrials.gov
Read 14 tweets
Long Covid Advocacy 💙 Profile picture
Dec 3, 2025
It's International Day of Persons with Disabilities.

To mark this we are looking at ways to help those house-bound or bed-bound with Long Covid or chronic illness with vital screening & testing. /1
🧵👇
Cervical cancer screening via self-sampling is coming soon to England’s national programme: people overdue for smear may receive a kit in the post allowing HPV testing at home. /2
🖇️
gov.uk/government/new…
HPV Testing is available from some private providers already. /3
🖇️
onlinedoctor.asda.com/uk/hpv-test-ki…
Read 14 tweets
Long Covid Advocacy 💙 Profile picture
Nov 26, 2025
🧵1️⃣ It’s UK Budget Day - so here’s a budget #RachelReeves hasn’t announced: a proper Long Covid Budget. We've estimated the real economic burden of Long Covid at £12-15 BILLION A YEAR.

At a £ a minute that puts us back in 26,500 BC - the Late Upper Paleolithic 😳
#Budget2026
2️⃣ 📈 According to the European Journal of Health Economics (2025), around 2 million people in the UK report Long Covid - c. 3% of the population.
link.springer.com/article/10.100…
3️⃣ 👩‍🔧 LOST EARNINGS
NIHR summary: Long Covid has caused an average drop in earnings of £10,929 per person among people referred to specialist clinics.
evidence.nihr.ac.uk/alert/how-much…
Read 15 tweets

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