Share this page!

Enter URL or ID to Unroll

You can paste full URL like: https://x.com/threadreaderapp/status/1644127596119195649
or just the ID like: 1644127596119195649

How to get URL link on X (Twitter) App

  1. On the Twitter thread, click on or icon on the bottom
  2. Click again on or Share Via icon
  3. Click on Copy Link to Tweet
  4. Paste it above and click "Unroll Thread"!
  5. More info at Twitter Help
Long Covid Advocacy 💙 Profile picture
@LongCovidAdvoc
Jan 16, 2023 • 10 tweets • 6 min read • Read on X
Scrolly
🧵Still marvelling at the wonder of the @Nature #LongCovid paper.
A few gems:
1. To see fatigue have ACTUAL pathologies listed 😲 Image
2. The ONE sentence that could prevent so much harm and waste of 💰
WHY doesn't everyone know this 🤷‍♀️ Image
3. Widespread lack of knowledge about post viral and Misformation
👀 Looking at you BPS #WesselySchool Image
4. The problem of the cross over of dysautonomia and anxiety
This confuses MANY researchers and clinicians - STOP IT! Image
5. Current #LongCovid research is NOT up to par. Image
6. We need MIXED COHORT research studies yesterday with a firm basis in #MECFS research Image
7. Profound Educational change is needed for Post Acute Viral Illness
#MECFS #LongCovid Image
8. The shock of seeing SO much pathology and biomedical detail 🤯 Image
9. This paper should be sent and read by ALL health professionals, policy makers and politicians especially GPs.
#MedTwitter
@wesstreeting @SteveBarclay
@NICEComms @DrAmirKhanGP
@bmj_latest @SamRobertsNHS
nature.com/articles/s4157…
10. Lastly - Validation
There is SO much biologically wrong with someone with #LongCovid
We deserve better Image

• • •

Missing some Tweet in this thread? You can try to force a refresh
　

Keep Current with Long Covid Advocacy 💙

Long Covid Advocacy 💙 Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!

PDF

Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

More from @LongCovidAdvoc

Long Covid Advocacy 💙 Profile picture
Dec 6
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
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
🧵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
Long Covid Advocacy 💙 Profile picture
Nov 25
🧵#CLoCK Update
New paper released on #longcovid paediatric fatigue that demonstrates UK research culture has not made the vital steps needed to meet need or understand the disease.
Let's critically assess the issues:
/1
They found that 61.6% met the CFQ (Chalder Fatigue Scale 😳) case-ness.
🔹35% at 3 months
🔹40% at 24 months
Higher risk = female, older c.15yrs, reported learning difficulty

This demonstrates that #longcovid research predominantly risks misrepresentation for young women.Why?/2
The key issue is the persistent use of the term fatigue. THERE IS NOT ONE MENTION OF PEM.

Fatigue as an umbrella term is misleading. It is a heterogeneous term that enables other issues to be conflated into Long Covid. /3
Read 17 tweets
Long Covid Advocacy 💙 Profile picture
Nov 13
1/ 🧵 New perspective: Maybe all those yoga classes aren’t fixing fatigue… turns out, in ME/CFS & Long COVID, we may not be stuck in fight/flight at all. 🧘‍♀️

Cort Johnson summarises a new model suggesting low brain norepinephrine (NE) is central to symptoms.
2/ In this view by David Goldstein & Lilian Aregawi: The sympathetic nervous system isn’t overactive - it’s struggling. Low NE vesicle levels in the locus coeruleus → high neural “firing” but low output → “wired but tired”. 😵‍💫
3/ Symptoms line up: alertness and anxiety (“wired”) yet low energy, poor recovery, orthostatic intolerance - exactly the “high noise / low gain” scenario described. 🛌
healthrising.org/blog/2025/11/1…
Read 13 tweets
Long Covid Advocacy 💙 Profile picture
Nov 10
Thread:
🚨 Long Covid and ME voices are being quietly hidden on X.
Let’s talk about what’s happening - and what we can do together to push back. 🧵
1️⃣ Over the past months, many advocacy accounts have seen posts vanish from feeds, searches, or hashtags. Follows have dived.
This isn’t a glitch - the algorithm de-prioritises health and advocacy content, especially when it includes links or repeated hashtags.
2️⃣ For a small non-profit or disabled advocate, that means hours of work can reach only a handful of people.
While misinformation spreads easily, lived experience and evidence-based advocacy are quietly filtered out.
Read 15 tweets

Did Thread Reader help you today?

Support us! We are indie developers!

This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Don't want to be a Premium member but still want to support us?

Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal

Or Donate anonymously using crypto!

Ethereum

0xfe58350B80634f60Fa6Dc149a72b4DFbc17D341E copy

Bitcoin

3ATGMxNzCUFzxpMCHL5sWSt4DVtS8UqXpi copy

Thank you for your support!

Follow Us!

Send Email!

:(