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Long Covid Advocacy 💙 ✓

@LongCovidAdvoc · 🇬🇧 · joined 18 Jul 2021

A non-profit social enterprise dedicated to people with #LongCovid + #ME. 💙📚 Home to the #cripademia book club. 🛍️ https://t.co/8JlRWqy8Id

14 603Followers
13 267Following
23 503Posts total
17.6KViews on collected posts

Latest posts

Long Covid Advocacy 💙 ✓@LongCovidAdvoc
Exciting news! We will be talking to Amanda Leduc about her book 'Disfigured: On Fairy Tales, Disability & Making Space.' Particularly pertinent seeing that so many books about Long Covid rely on the 'magic cure' trope. Live: 18th Sept 7pm BST on X • Youtube • FB Recording http
Event flyer for "Cripacademia Pod Bookclub with Amanda Leduc" titled "06. On Fairy Tales." Features a photo of author Amanda Leduc, her book cover "Disfigured: On Fairy Tales, Disability, and Making Space," and event details: Livestream on Friday, 18th Sept at 7pm, broadcast on Long Covid Advocacy YouTube, X, and Facebook.
314 views · 2 likes · 1 reposts · 0 replies Open on X →
Long Covid Advocacy 💙 ✓@LongCovidAdvoc
@LongCovidAdvoc These people, from Wessely on, ignore the giant problem with their "influencer" theory. Many of us became sick long before the internet and didn't hear about ME until years after we became ill. But let's not let facts get in the way of a good theory. 231 views · 23 likes · 3 reposts · 2 replies Open on X →
Long Covid Advocacy 💙 ✓@LongCovidAdvoc
3/3 We deserve better than internalised misogyny that invalidates & demonises women in response to a forgotten pandemic. https://t.co/QgszqNgQXF
Women with poorly understood illnesses have a long history of having their physical symptoms dismissed as psychological. We should be asking why patients aren't being believed, diagnosed and treated — not finding ever more sophisticated ways to blame them. To have female doctors & journalists display this internalised misogyny should cause reflection on their part. This matters particularly now, as disabled people are increasingly being blamed for “economic inactivity” and welfare spending. The old medical dismissal is being repackaged for a new political moment. Disabled people are not the problem. And “psychosomatic” should never become the answer simply because medicine doesn't yet have all the answers.
614 views · 90 likes · 22 reposts · 0 replies Open on X →
Long Covid Advocacy 💙 ✓@LongCovidAdvoc
2/3 Suzanne O'Sullivan - The Ultimate Sickfluencer https://t.co/iyBLYmTOO1
If they become knowledgeable about their condition, they're “too attached” to their diagnosis. If they speak publicly about their illness, they're “attention-seeking”. Almost any patient response can be turned into evidence for the theory. And there is an uncomfortable irony in repeatedly accusing others of seeking attention while becoming a prominent public figure through telling people that their physical symptoms may actually be psychological. Perhaps if we're going to talk about “sickfluencers”, we should also examine who is rewarded with platforms, media attention, books and professional status for promoting these narratives. O'Sullivan has become the ultimate sickfluencer, fulfilling what she criticises others for.
831 views · 95 likes · 27 reposts · 1 replies Open on X →
Long Covid Advocacy 💙 ✓@LongCovidAdvoc
Our statement in response to The Telegraph article: 'How having a disability became cool' Young women, named 'sickfluencers', are turning chronic illness into a lifestyle trend & entrenching a culture of economic inactivity.' by Poppy Coburn https://t.co/gdibG1htY4
It is disheartening & predictable to see Suzanne O’Sullivan once again given a platform to promote psychosomatic explanations for chronic illness — this time in a Telegraph article attacking disabled people as influenced by social media, identity and attention. There is a fundamental problem with this framework: it creates a self-reinforcing evidential trap. If patients accept a psychosomatic explanation, it confirms the theory. If they reject it, their distress is interpreted as evidence that they are psychologically invested in being ill. If they seek support from other patients, that's “social reinforcement”.
6.6K views · 357 likes · 138 reposts · 9 replies Open on X →
Long Covid Advocacy 💙 ✓@LongCovidAdvoc
👋 Hello all Just a quick note to say that we are back from our August break and easing our way back into advocacy. If there's anything you think needs our attention please just drop a comment. 💙 Solidarity as ever 1.2K views · 75 likes · 3 reposts · 5 replies Open on X →
Long Covid Advocacy 💙 ✓@LongCovidAdvoc
@LongCovidAdvoc @nee_massey Stuart has done quite a few excellent interviews about the book. He was kind enough to talk to me as it was coming out and Long Covid featured as part of our discussion. https://t.co/TXUHN0pSfA 132 views · 3 likes · 1 reposts · 1 replies Open on X →
Long Covid Advocacy 💙 ✓@LongCovidAdvoc
@nee_massey We are still technically on break till Sept but just posting to give people time to prep for our autumn book club! 121 views · 2 likes · 0 reposts · 0 replies Open on X →
Long Covid Advocacy 💙 ✓@LongCovidAdvoc
@nee_massey Join us here: https://t.co/X2IaIQkI5Y 173 views · 1 likes · 1 reposts · 1 replies Open on X →
Long Covid Advocacy 💙 ✓@LongCovidAdvoc
Our autumn book club has been voted in! 'Nodody's Empire' by Stuart Murdoch @nee_massey Starting on Sept 1st on Fable or follow #cripademiabookclub hashtag. 📚💙 #booksky 🖇️👇 https://t.co/unKaxdCbtn
Book club graphic featuring Stuart Murdoch’s Nobody’s Empire, with vintage photo of a young man, autumn book club details, and Belle & Sebastian sticker.
5K views · 7 likes · 2 reposts · 2 replies Open on X →
Long Covid Advocacy 💙 ✓@LongCovidAdvoc
58 organisations. 1,200 individuals We're incredibly grateful to everyone who supported our open letter to the Royal College of Psychiatrists. This coalition brings us together from across the community. A powerful reminder of what solidarity can achieve. Update & full 💌👇🎙️ ht
Open Letter update graphic featuring a black-and-white photograph of two hands gently clasped in support. Large white text reads: “Open Letter Update: Solidarity, Engagement, and Next Steps.” Smaller text below states: “58 orgs & 1200 individuals sign regarding the framing of Long Covid in the Royal College of Psychiatrists 2026 International Congress.” The website “LONGCOVIDADVOCACY.SUBSTACK.COM” appears at the bottom. The image conveys solidarity, collective action, patient advocacy, Long Covid awareness, disability rights, and community engagement.
2.3K views · 72 likes · 20 reposts · 1 replies Open on X →

Against accounts of the same size

10 posts from the last 90 days, next to the 10K–100K follower range. ordinary reach for its size, stronger reaction than most.

Median views464this account924median for 10K–100K
Reach, %3.18%this account3.62%median for 10K–100K
Engagement, %5.33%this account1.52%median for 10K–100K
MetricThis accountMedian for 10K–100KRatio
Median views per post4649240.50×
Reach (views ÷ followers)3.18%3.62%0.88×
Engagement rate5.33%1.52%3.50×

Others in this range →   Compare with another account →   How these benchmarks are built →

Growth & engagement

How the posts we collected actually performed: views and reaction rate post by post, what the audience did with them, and where the follower count goes.

Views per post

2.3K4 Jun
5K21 Aug
173
121
132
1.2K5 Sep
6.6K6 Sep
831
614
231
31411 Sep

Last 11 collected posts, oldest on the left. The scale is logarithmic: one post can outrun the rest a hundred times over.

Engagement rate per post

4.01%4 Jun
0.22%21 Aug
1.73%
1.65%
3.79%
6.87%5 Sep
7.59%6 Sep
14.80%
18.24%
12.12%
0.96%11 Sep

Reactions — likes, reposts, replies and quotes — divided by views. Median for 10K–100K accounts is 1.52%.

What the audience does

Likes71.6%727 in total
Reposts21.5%218 in total
Replies2.2%22 in total
Bookmarks4.8%49 in total

Share of every reaction we collected for this account. Replies mean argument, reposts mean endorsement, bookmarks mean the post was worth keeping.

The follower curve appears once this account has two daily snapshots — we take one a day, and this one is on its first.

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