Today’s #ThereForME blog is from Jane Ryan, legal representative for the Long Covid groups at the UK’s Covid inquiry. As we mark #LongCovidAwarenessDay, Jane reflects on what we’ve seen so far and what we can expect as the inquiry continues to unfold. www.thereforme.uk/p/probing-an...

A wonderful article by Jane Ryan on #LongCovid and the #CovidInquiry. Thank you for your lovely tribute to Ondine: “Ondine was an incredible activist for the Long Covid community and driving force behind our participation in the Inquiry. She is sorely missed.”

The Swiss government will soon decide if it should recommend that parliament approves a motion demanding a national strategy on #longcovid #mecfs myalgic encephalomyelitis #postvac. @swisslc-kids.bsky.social @sgme.bsky.social ME/CFS Schweiz and @longcovidch.bsky.social support the strategy.

"As a nurse I struggled to get my head around this. These people were severely ill. Yet they were being dismissed by the NHS, despite usually having been active and healthy prior to getting sick. Why would they not be believed?" Love this piece from Rebecca Logan 👇🏻 #ThereForME

Really well done piece out today from Rebecca Logan, telling her story and how it led to campaigning for better care👇

"As a medical practitioner myself, I thought that those working in healthcare were mostly understanding, empathetic and equipped to help their patients. ... I have experienced a lack of understanding, interest and care" It shatters the illusion, but its not just ME and Long Covid.

Petition update: More publicity Cochrane won't want to see from the British Medical Journal and George Monbiot Examining Cochrane's other reason for abandoning the replacement review & thanks to the 15k supporters from 85 different countries, & 79 organisations www.change.org/p/cochrane-w...

📣 Save the date: 15 March 2025, 2-4pm. Event & community strategy launch - come together, reflect on our progress & shape what's next. Also featuring the first exhibit of the Long Covid Support banner! 📍Online & In-Person at Lyric Theatre, Hammersmith. More details soon! #LongCovid

If I may, the press: Do not write "Trump blamed DEI." Spell out what he's saying. "Trump blamed women, black people, and other minorities for the mid-air collision." Follow that up with: "He did not specify which black people or women."

My piece for this week’s #WIPWednesday is for @longcovidsupport.bsky.social Long Covid Banner. Those numbers are my lowest & highest recorded heart rates since I started wearing an armband monitor this year. A slightly rushed freehand piece because of the deadline. I’m using coton a broder thread

How has #ME stopped you accessing healthcare you need or made you suffer severe PEM? We #pwME need to be able to get healthcare safely. Answers to post below. 👇

Excellent piece by @lewisbaston.bsky.social on the decline of two-party politics, why it matters, and why democrats should pay more attention to Australia. samf.substack.com/p/can-the-de...

This from @francesryan.bsky.social is achingly familiar. My husband is completely bedbound w/ v severe ME. He cannot meet any basic needs without help. I’ve lost count of the times I’ve had to justify why he can’t be left alone without care. It’s exhausting. www.theguardian.com/commentisfre...

🆕For healthcare to be safe it needs to be accessible. But what does this look like for people with ME and Long Covid? This blog from @thereforme.bsky.social explores the barriers that impact access to NHS care for people with ME and Long Covid www.pslhub.org/learn/improv... #ThereForME

Really great to collaborate with @patientsafetylearning.org on this blog looking accessibility of NHS care for #PwME #PwLC! We’re collecting community experiences and would love to hear from you 👇

📣 Some of the work we do is in #LongCovid research. Several of our charity members have been involved in an array of research and have co-authored many significant papers. Take a look at some of them on our website - Link below! ⬇️ #ResearchLongCovid

#ThereForME has collaborated with @patientsafetylearning.org on this blog looking at accessibility of NHS care for people with ME and Long Covid. We’re collecting community experiences and would love to hear from you. Details below 👇

This is deeply shocking and disturbing, the opposite of scientific good practice. As I see it, a group of diehards promoting a discredited treatment (exercise "therapy" for ME/CFS patients) are seeking to stifle medical progress - to protect their reputations. And Cochrane has kowtowed to them. 🧵

Impressive report by @crunchme.bsky.social This will be useful for advocacy to increase research funding. 👇 crunchme.notion.site/homepage

Great to see @karenlhargrave.bsky.social sharing this feedback at the National T&F Group today. Another good meeting, but gov and DHSE have a MAMMOTH task ahead to deliver. Very promising discussions, let’s hope it can translate to meaningful action and change for people with #ME 🤞🏽

Very excited to say that @crunchme.bsky.social's first report is out and about 🙌 The Future is a Policy Choice: Addressing Infection-Associated Chronic Conditions Our goal here is to bring together the key info needed to make the case for taking action *now*! drive.google.com/file/d/17fgU...

A big thanks to everyone who shared their feedback and ideas with us 🙏💡 It was great to hear many of our priorities for the delivery plan resonated - but also to have some fresh insights from the community!

Today’s #ThereForME blog is from David Tuller, reflecting on a decade spent debunking the PACE Trial. @davetuller1.bsky.social explains what went wrong with PACE, how its findings became orthodoxy and the template was transferred to Long Covid. More here 👇 www.thereforme.uk/p/when-bad-s...

Forever thankful to David Tuller for all his hard work debunking the myth that my illness isn’t a real biological condition

New @thereforme.bsky.social blog post today by David Tuller @davetuller1.bsky.social : "When bad science becomes orthodoxy: Reflections from a decade of debunking the PACE trial" www.thereforme.uk/p/when-bad-s... #MEcfs #LongCovid #PACEtrial

We saw some requests for transparency re: who is involved in the Task & Finish group for the new Delivery Plan for ME/CFS. We raised this with DHSC who have kindly given us permission to share the list. On our new Delivery Plan explainer here 👇 www.thereforme.uk/p/about-the-...

In today’s #ThereForME substack we share some of the feedback we received from the community about your priorities for the new Delivery Plan for ME/CFS. 6 things you’d like to see in the delivery plan 👇 www.thereforme.uk/p/six-things...

Wow. Hope by doing. Change by acting. @thereforme.bsky.social leading the way. Thank you 🥹 www.thereforme.uk/p/six-things...

📣 Are you designing/conducting research on #LongCovid? Our Research Involvement Consultancy is here to help! Including: 🔴 Promoting studies for recruitment 🔴 Protocol & proposal design 🔴 Providing PPI on studies Link: tinyurl.com/longcovidRIC #NothingAboutUsWithoutUs

🚨1/5. Some findings from the 2024 National GP Patient Survey: ⚠️ 4.6% of people have #LongCovid ⚠️ In addition, 9.4% were not sure if they have Long Covid ⚠️ And 1.2% preferred not to say (Question asked of 692,751 patients) #CovidIsNotOver Link⬇️

'Fatigue and fog: Navigating Nigeria’s long COVID crisis' 'The COVID-19 pandemic may have subsided, but the battle is far from over for millions. In the shadows of recovery lies a new epidemic: long COVID, a silent storm reshaping lives...' www.devex.com/news/fatigue...

1) New German preprint where researchers took autoantibodies of Long Covid patients and healthy controls and used them to stimulate monocyte cell lines. They found distinct cytokine responses induced by the patient antibodies that suggested vascular and immune dysfunction.

‼️UK Covid Inquiry Mod 4 starts today. #LongCovid Groups were refused as Core Participant. “shows massive inequality of arms between ordinary members of the public seeking accountability for long term damage to their health from #Covid19 & the Government” - Jane Ryan, Bhatt Murphy Solicitors Link ⬇️

@karenlhargrave.bsky.social and I have written a blog on our hopes for the government’s Final Delivery Plan for ME and other Infection Associated Chronic Conditions like Long COVID ⬇️

Six things #ThereForME wants to see in the Delivery Plan for ME 👇🏼 By @karenlhargrave.bsky.social and @binitakane.bsky.social

Unsurprising, but useful. #MECFS #MDD

🌟 Voices of M.E. 🌟 Have you or someone you love been affected by #MECFS or #LongCOVID? Share your story on OMF’s Voices of ME web portal. Patients, caregivers, family members, and friends are all welcome to contribute. Share your story today 👉 ow.ly/no2A50UFkq8

the recording of the 1st int meeting on pediatric #longcovid are FREELY available online (youtube & substack). The 1st meeting where the scientific community clearly talked of LC in kids as a real organic disease needing urgent treatments danilobuonsenso.substack.com/p/presentati... 1/

New short overview piece with links "What is myalgic encephalomyelitis?" by @thesicktimes.bsky.social & @longcovidjustice.bsky.social ( @mileswgriffis.bsky.social , @betsyladyzhets.bsky.social & @sunsopeningband.bsky.social ) longcovidjustice.org/what-is-me/ #MyalgicEncephalomyelitis #PwME

A big thank you to Theres Luthi for this highly insightful article about #ME and #LongCovid. It highlights the stigma & misattribution of psychological causes for ME, the harms of graded exercise therapy, and the far-reaching impact of this misunderstanding on those now living with Long Covid.

1/3 I’m excited to share that my story has been included as a chapter in the 2024 edition of #FindingLightInTheDarkness, curated by Jon Key. Link here: amazon.co.uk/dp/B0DQ8VHBZ

An audacious PR campaign from the Ketamine marketing board.

📣 1/3 We're off to a great start with the Long Covid Support Banner! A big thank you to everyone who has sent fabric, shared on social media, or submitted responses through our form. Still plenty of time to get involved! Link: tinyurl.com/LCSBanner #LongCovid

"This is an extinction-level event for the idea of objective truth on social media – an organism that was already on life support, but was clinging on in part because Meta was willing to fund independent factchecking organisations". www.theguardian.com/commentisfre...

I’ve written about a tiny portion of Sophia’s daily existence to bring very severe ME out of the darkness and onto the radar of those in a position to instigate change 🙏

Also looking for feedback for where our focus should be in 2025!? ▶️ In-depth articles ▶️ Social media presence ▶️ Building resources (what kind?) ▶️ Educational materials Any other ideas?

“The fact that the medical community is confounded by it is not an excuse for dismissing and neglecting sufferers.” #pwME #MECFS

Sophia's mum - @tenaciousmumma.bsky.social - has written a piece for @thereforme.bsky.social about Soph, the difficulties in caring for her, and how fatigue and other #MECFS have been wrongly stigmatised as "just being tired". #severeME #MECFS #pwME #caring www.thereforme.uk/p/this-is-no...

We’ve got a hard hitting #ThereForME substack out today from Karen Galpin, writing about caring for her daughter Sophia, who has very severe ME. Karen describes their daily reality, responding to narratives that downplay the impact of #ME www.thereforme.uk/p/this-is-no...