Long Covid Advocacy

👋 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

Protest tomorrow in front of Norwegian parliament over issues related to the upcoming national guidelines for "long-term fatigue": virology.ws/2026/10/27/t...

#LongCovid #ME

A brilliant example of advocacy with a difference: literary, witty, incisive and deeply human. ‘Dobbin and Goodburn: A Tale of Two Cities’ challenges us to ask why people with ME continue to fight so hard to be heard, believed and properly supported. Well worth reading. #ME #MEadvocacy

Awesome letter from @longcovidadvoc.com to UK PM Andy Burnham, pleading him to take real action for ME/CFS and LongCOVID. A small step in the right direction is being requested. This would be real hope, not the false hope of 2010s rehabilitation clinics. www.longcovidadvoc.com/post/dobbin-...

Fantastic information from @ukpots.bsky.social on #PoTSAwarenessDay Many of our #LongCovid members suffer with this debilitating condition Educational resources for both patients and HCWs on their website potsuk.org

We’re really pleased that our MP email template has been supported by wider ME organisations via Forward ME 🫶 If you have the energy, you can help support @bethdobbin.bsky.social in her call for ME research funding by writing to your MP. More here 👇

“It’s a fluctuating illness, and you can’t just take a snapshot of it and think that’s what the person’s like all the time.” Jane Colby explains why #MECFS can be so easily misunderstood on the BBC Politics Show in 2009.

We're happy to share that we now have an MP briefing live (joint with @actionforme.bsky.social) which you can send to your MP to give them all the info they need to support Beth Dobbin in her campaign for increased ME research funding. The briefing and our template are linked below👇

Beth Dobbin has clearly responded on X & IG to the inadequate response to her letter to Andy Burnham. We completely agree. It is inadequate and pitiful. SequenceME needs FULL funding not a partial pittance. We cannot make progress with this approach. @yvettecooper-mp.bsky.social

💌 Excellent letter by Beth Dobbin to @andyburnham.bsky.social Her post received 1.2 million viewson IG! Andy we urgently need: 1) NHS commissioned care 2) Select committee inquiry 3) National clinical lead/Tsar 4) Research funding +

In case you hadn't seen it, yet: #CDC has created a new survey that removed #LongCOVID and #MECFS, both of which have previously been measured. There are other disability- and chronic-illness-related questions missing, too. You can leave a comment here: 🧵 www.regulations.gov/commenton/CD...

Medicine needs to do A LOT better. The speed at which child protection referrals are made for complex illnesses medicine doesn't understand is terrifying.

📢 Please join us for a special online screening of the People’s Emergency Briefing on the climate and nature crisis on Saturday 24th October at 4pm. The film features Chris Packham alongside leading scientists, celebrities, and a host of ordinary Brits. 1/

📺 Quality interview with Beth Dobbins on @BBCSport Thank you Beth for your precious energy for this. We understand the impact this can have.

Outstanding website from Clinically Vulnerable Families with excellent resources & info 👇

Therapy vs Persuasion - excellent analysis from Chronic Living Therapy about that Norwegian paper on manufacturing hope. chroniclivingtherapy.com/therapy-v-pe...

They should be concerned. It's the key diagnostic question: what happens when effective biological treatment is found? Their whole model collapses & the reality that they are gaslighting patients will be clear.

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...

“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.

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

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...

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...

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...

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