Long Covid Advocacy

@longcovidadvoc.com

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A non-profit social enterprise dedicated to people with Long Covid + ME. Shifting the paradigm one step at a time...

💙📚Home to the #cripademia book club.

https://www.longcovidadvoc.com/

🛍️ https://longcovidadvoc.shop/

@davetuller1.bsky.social Oct 10, 2026, 6:16 PMReposted by @longcovidadvoc.com

WTF, Springer Nature? Removing offensive language about patients being "combative" and "reproachful" is not enough. You need to explain why the language was there in the first place. virology.ws/2026/10/10/t...

virology.wsTrial By Error: Springer Nature Removes Description of "Fatigue" Patients as "Combative" and "Reproachful" | Virology BlogBy David Tuller, DrPH A month after publishing a German-language article about chronic fatigue syndrome as part of a larger project, Springer Nature has rem ...

@longcovidadvoc.com Oct 9, 2026, 4:30 PM

Without paywall
archive.ph/ZSxyY

@longcovidadvoc.com Oct 9, 2026, 4:30 PM

Article. Without paywall link in next comment.
www.newscientist.com/article/2591...

@longcovidadvoc.com Oct 9, 2026, 4:27 PM

🧠Not related to #LC but fascinating article in The New Scientist about how pressure on the shin bone eases traumatic brain injury through the bone-brain axis. And how it might be beneficial for those who can't exercise.
🖇️👇

Microscopic view of bones from frontispiece of article in The New Scientist Compressing bones releases molecules that ease traumatic brain injuries.

@abrokenbattery.bsky.social Oct 6, 2026, 7:07 AMReposted by @longcovidadvoc.com

“The harm you have done is incalculable. It’s not me who has been spreading great harm around the world. It’s you, mate.”

George Monbiot on being accused by Prof Michael Sharpe of “spreading” #LongCovid by writing about it and why he started writing about the #MECFS scandal.

@longcovidadvoc.com Oct 6, 2026, 1:44 PM

Link to paper:
www.sciencedirect.com/science/arti...

@longcovidadvoc.com Oct 6, 2026, 1:43 PM

Outstanding. Thank you for your work, time, energy & dedication on this article.

@longcovidadvoc.com Oct 6, 2026, 1:42 PM

Extraordinary article about ME - its history, controversialisation & how medical ignorance is systemically maintained. Clear & thorough 💫 Brilliant 🧵by Chloe 👇

@longcovidadvoc.com Oct 5, 2026, 3:27 PM

With pneumonic plague threatening, it reminds us that we are in a worse place if another pandemic strikes: 🔸Mitigations has been minimised 🔸Masks are political 🔸'Normal' has been pushed at all cost 🔸Compliance with public health is lower 🔸Disinformation is prominent AND the immune damage from Cvid

@longcovidadvoc.com Oct 2, 2026, 1:26 PM

We have taken part in the Government consultation on fireworks and pyrotechnics, with the view that #pwME & Long Covid are at risk of deterioration & PEM due to the noise & sensory risk of fireworks.

Consultation closes: 7th Oct.
Details 👇
www.gov.uk/government/c...

@thereforme.bsky.social Oct 1, 2026, 6:35 PMReposted by @longcovidadvoc.com

The Guardian has published our letter responding to George Monbiot's article about how people with ME are abandoned, dismissed and gaslighted.

We point out the inadequate political attention, and call for action from the Health & Social Care Select Committee.

www.theguardian.com/society/2026...

George Monbiot is right to draw attention to the “shocking social crisis playing out behind closed doors” for people living with ME. Not only is ME a devastating condition, but too often those affected are failed by the very systems meant to care for them.

The level of political attention the issue has received is nowhere close to the scale of the problem. The government’s strategy on ME, published over a year ago, lacked both substantive funding and outcome targets. Its key action for those affected by the most severe form of ME – “exploring” whether a specialised service could be commissioned – is now delayed until April 2027. We hope that, as a first step, the health and social care select committee will take up this critical issue as a matter of urgency.
Karen Hargrave and Emma Gore-Lloyd
Co-founders, ThereForME charity

@karambales.bsky.social Sep 28, 2026, 6:50 AMReposted by @longcovidadvoc.com

Why is discussing lack of
Covid vaccine access taboo in
the UK?

Guardian article criticises RFK JR while
ignoring greater restrictions in the UK

Other ignored issues includes IPC Guidance, Long Covid, clean air
counterdisinformationproject.substack.com/p/why-is-dis...

@cgatist.bsky.social Sep 28, 2026, 8:20 AMReposted by @longcovidadvoc.com

The 2026 PRIME symposium kicks off with reflections from Kelly McLellan on the importance of Patient and Public Involvement in ME/CFS research. #Prime26 #pwME #mecfs

@alemmatthees.bsky.social Sep 28, 2026, 10:10 AMReposted by @longcovidadvoc.com

(1/12) No. The painful truth about #LongCOVID is not the alleged suppression of brain retraining, but that the scale of the pandemic and aftermath were preventable. Systemic and collective failures emerged from a chain of poor decisions. Millions dead. Millions of lives ruined. Trillions $ lost.

@longcovidadvoc.com Sep 27, 2026, 12:05 PM

Also on your favourite podcast platform, just search Cripademia!

Full interview:
www.youtube.com/live/N0VOLdc...

@longcovidadvoc.com Sep 27, 2026, 12:05 PM

We spoke to Amanda Leduc for our Cripademia book club.

Here she talks about the idea of complex embodiment a disability model between the social & medical models.

It's particularly important for those with #LC & #ME

Full 🖇️👇