Oonagh Cousins

“Instead of accepting long-term ill-health and disability, the government could have approached decisions to ease restrictions armed with data on the impact of long-term morbidity.” Jane Ryan. Legal representative for Long Covid Groups at the Covid inquiry.

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.

More publicity Cochrane won't want to see The public response to Cochrane's 17th December announcement of the abandonment of the replacement review process has been building and all of it has been critical. We share some of the responses here...

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...

White background with two large green half circle ribbons in the top left and bottom right corners. In the top left ribbon is black text reading Long Covid Support Community Strategy Launch. In the bottom right ribbon there is black text reading Save the date Saturday 15 March 2025. There is a black and white long Covid Support logo in the bottom left hand corner.

📣 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."

A black linen fabric piece 30cm by 6cm. Two felt pink hearts are pinned onto it, with the numbers 41 and 211 stitched on them in red. In the centre of the piece is some unfinished stitched lettering and a needle and thread.

A black linen fabric piece 30cm by 6cm on a table. Two felt pink hearts are pinned onto it, with the numbers 41 and 211 stitched on them in red. In the centre of the piece is some unfinished stitched lettering and a needle and thread. Also in the table are sewing accessories and embroidery threads in different colours

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. 👇

Can the decline of two-party politics be reversed? Why electoral systems can change how much faith people have in democracy

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...

A reader with a terminal illness emailed in despair. What she told me should shock us all | Frances Ryan Rosy is unable to move, breathe or eat unassisted. Yet NHS assessors think it’s fine to leave her alone for hours at a time, says Guardian columnist Frances Ryan

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...

Exploring the barriers that impact access to NHS care for people with ME and Long Covid #ThereForME explores the barriers that impact access to NHS care for people with ME and Long Covid, and encourages the patient community to share their experiences

🆕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 👇

Dark background. Long Covid Support logo in top left. Graphics include blue quote marks, red star, newspaper with the word research, hand holding red jigsaw piece. Headed Co-Authored Research. 7 white boxes contain research titles. "Long Covid: a global health issue - a prospective, cohort study set in four continents", "Pathophysiological Mechanisms in Long COVID A Mixed Method Systematic Review", "Impact of Long COVID on productivity and informal caregiving", "Prevalence of orthostatic intolerance in long covid clinic patients and healthy volunteers: A multicenter study", "When you can't find the words: Using body mapping to communicate patients' experiences of Long Covid", "A Core Outcome Measurement Set for Research and Clinical Practice in Post COVID-19 Condition (Long COVID) in Adults: An International Delphi Consensus Study" and "Long COVID and Health Inequalities: What's Next for Research and Policy Advocacy?". Text at the bottom says Find more on our website www.longcovid.org

📣 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. 🧵

CrunchME The evidence and insight base to crunch infection-associated chronic illnesses.

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

#ThereForME When bad science becomes orthodoxy Reflections from a decade of debunking the PACE trial Emma Gore-Lloyd and Karen Hargrave Jan 21, 2025 Today’s guest post is from David Tuller. David Tuller, DrPH, is a senior fellow in public health and journalism at the University of California, Berkeley. Since 2015, his Trial by Error project has investigated scientific, methodological and ethical problems with research in the field of ME/CFS and, more recently, Long Covid. His position at Berkeley is supported by crowdfunded donations to the university, largely from patients and advocates.

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

About the Delivery Plan for ME/CFS In March 2025 the Department of Health and Social Care (DHSC) will publish a cross-government delivery plan for ME/CFS, aiming to improve attitudes, bolster research and better lives.

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-...

Six things you’d like to see in the Delivery Plan for ME Sharing feedback from our readers about their priorities for the Delivery Plan

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...

Six things you’d like to see in the Delivery Plan for ME Sharing feedback from our readers about their priorities for the Delivery Plan

Wow. Hope by doing. Change by acting. @thereforme.bsky.social leading the way. Thank you 🥹

www.thereforme.uk/p/six-things...

Top part of image shows several white jigsaw pieces fitted together on which it says Research. There is one space remaining over which is a red jigsaw piece saying Patient Voice. There is a red strip below this that says Research Involvement Consultancy, and the Long Covid Support logo and website address www.longcovid.org. Text below reads: Welcome to the RIC! • Protocol & proposal design and development • Promoting study recruitment • Steering & Governance of ongoing work • Public engagement • PPI training • And more! www.tinyurl.com/longcovidRIC research@longcovid.org There is a QR code for our website and a quote saying "I have been working in PPI for 17 years and have never had the pleasure of working with such a dynamic, passionate and knowledgable group as yourselves." Amy Rebane, Patient & Public Involvement, Engagement & Participation Lead, NIHR Leeds Biomedical Research Centre. At the very bottom it says Long Covid Support is a registered charity in England and Wales 1198938.

📣 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

Slide with text saying Did patients have 'long COVID'? Five per cent (4.6%) described themselves as having "long COVID". The majority (84.8%) said that they did not have "long COVID". Around one in ten (9.4%) patients were not sure and 1.2% said they would prefer not to say. Base: asked of all patients: 2024 (692,751). Ipsos GPPS National Report July 2024 Version 1 Public

🚨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⬇️