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Oonagh Cousins

@oonaghcousins.bsky.social
1.3K followers 207 following 18 posts
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Reposted by Oonagh Cousins
ThereForME @thereforme.bsky.social · 18/03/2025
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...
“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.
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Long Covid SOS @longcovidsos.bsky.social · 18/03/2025
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.”
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Chantal Britt @chantalbritt.bsky.social · 09/02/2025
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.
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Oonagh Cousins @oonaghcousins.bsky.social · 04/02/2025
"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
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Karen Hargrave @karenlhargrave.bsky.social · 04/02/2025
Really well done piece out today from Rebecca Logan, telling her story and how it led to campaigning for better care👇
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Paul Keeble ME/LC @paulkeeble.co.uk · 04/02/2025
"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.
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Reposted by Oonagh Cousins
Science for ME (S4ME) @s4me.info · 02/02/2025
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...
change.org
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...
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Long Covid UK @longcoviduk.bsky.social · 02/02/2025
📣 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
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.
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Dan Murphy @bungdan.bsky.social · 30/01/2025
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."
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Janey Colbourne @janeycog.bsky.social · 22/01/2025
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
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
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Reposted by Oonagh Cousins
Carole Bruce @cabruce.bsky.social · 30/01/2025
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. 👇
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Robert Saunders @robertsaunders.bsky.social · 30/01/2025
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...
samf.substack.com
Can the decline of two-party politics be reversed?
Why electoral systems can change how much faith people have in democracy
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Karen Hargrave @karenlhargrave.bsky.social · 28/01/2025
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...
theguardian.com
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
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Reposted by Oonagh Cousins
Patient Safety Learning @patientsafetylearning.org · 30/01/2025
🆕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
pslhub.org
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
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Karen Hargrave @karenlhargrave.bsky.social · 30/01/2025
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 👇
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Long Covid UK @longcoviduk.bsky.social · 30/01/2025
📣 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
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
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Oonagh Cousins @oonaghcousins.bsky.social · 30/01/2025
#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 👇
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George Monbiot @georgemonbiot.bsky.social · 29/01/2025
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. 🧵
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ME/CFS Science @mecfsscience.org · 28/01/2025
Impressive report by @crunchme.bsky.social This will be useful for advocacy to increase research funding. 👇 crunchme.notion.site/homepage
crunchme.notion.site
CrunchME
The evidence and insight base to crunch infection-associated chronic illnesses.
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Binita Kane @binitakane.bsky.social · 28/01/2025
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 🤞🏽
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Ror Preston @rorpreston.bsky.social · 27/01/2025
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...
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Karen Hargrave @karenlhargrave.bsky.social · 28/01/2025
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!
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ThereForME @thereforme.bsky.social · 21/01/2025
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...
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TeasetMonster @teasetmonster.bsky.social · 21/01/2025
Forever thankful to David Tuller for all his hard work debunking the myth that my illness isn’t a real biological condition
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Tom Kindlon @tomkindlon.bsky.social · 21/01/2025
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
#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.
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ThereForME @thereforme.bsky.social · 23/01/2025
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-...
thereforme.uk
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.
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ThereForME @thereforme.bsky.social · 28/01/2025
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...
thereforme.uk
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
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Didier @medidier.bsky.social · 28/01/2025
Wow. Hope by doing. Change by acting. @thereforme.bsky.social leading the way. Thank you 🥹 www.thereforme.uk/p/six-things...
thereforme.uk
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
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Long Covid UK @longcoviduk.bsky.social · 23/01/2025
📣 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
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.
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Long Covid UK @longcoviduk.bsky.social · 20/01/2025
🚨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⬇️
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
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Billy Hanlon @bhanlon15.bsky.social · 16/01/2025
'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...
devex.com
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, economies, and health...
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ME/CFS Science @mecfsscience.org · 14/01/2025
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.
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Long Covid UK @longcoviduk.bsky.social · 14/01/2025
uk.style.yahoo.com/charities-do...
uk.style.yahoo.com
Charities and doctors are 'livid' the COVID-19 Inquiry has excluded representatives from Long Covid Groups
Leading doctors and charities in the UK are “livid” that Baroness Heather Hallett has excluded representatives from Long Covid Groups in Module 4 of the COVID-19 Inquiry.
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Long Covid UK @longcoviduk.bsky.social · 14/01/2025
‼️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 ⬇️
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Binita Kane @binitakane.bsky.social · 14/01/2025
@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 ⬇️
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Oonagh Cousins @oonaghcousins.bsky.social · 14/01/2025
Six things #ThereForME wants to see in the Delivery Plan for ME 👇🏼 By @karenlhargrave.bsky.social and @binitakane.bsky.social
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 13/01/2025
Unsurprising, but useful. #MECFS #MDD
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Open Medicine Foundation (OMF) @openmedf.bsky.social · 13/01/2025
🌟 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 image is a collage with four photographs surrounding a central circle that reads "Tell Us Your Story - Voices of M.E. Top Left: A person crouching next to a dog in an outdoor setting with trees in the background. Top Right: A person climbing a steep, foggy path with railings, possibly on a hike. Bottom Left: A smiling person with long hair, set against a dark background. Bottom Right: A person holding a black puppy, indoors with wooden walls visible.
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Danilo Buonsenso @buonsenso.bsky.social · 12/01/2025
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/
danilobuonsenso.substack.com
Presentations of the International Meeting on Long Covid in Children
Dear All
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Tom Kindlon @tomkindlon.bsky.social · 11/01/2025
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
What is myalgic encephalomyelitis?
from LONG COVID ESSENTIALS
a resources series by The Sick Times x Long COVID Justice

Myalgic encephalomyelitis
Myalgic encephalomyelitis (ME)*, is an umbrella term for a debilitating, multi-systemic disease often triggered by an infection. It can range in severity from mild to very severe and cause people to be home-bound or fully bed-bound. The disease is life-changing, even when mild.
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Oonagh Cousins @oonaghcousins.bsky.social · 11/01/2025
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.
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Oonagh Cousins @oonaghcousins.bsky.social · 09/01/2025
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
amazon.co.uk
Finding Light in the Darkness - New Edition (2024): How businesses, organisations and teams adapted to the pandemic, and lessons for other challenges and crises (Lessons from the pandemic Book 6)
Finding Light in the Darkness - New Edition (2024): How businesses, organisations and teams adapted to the pandemic, and lessons for other challenges and crises (Lessons from the pandemic Book 6) eBook : Key, Jon: Amazon.co.uk: Kindle Store
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Sam Freedman @samfr.bsky.social · 08/01/2025
An audacious PR campaign from the Ketamine marketing board.
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Long Covid UK @longcoviduk.bsky.social · 08/01/2025
📣 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
Teal background with yellow grid lines. Rectangular navy piece of fabric. Fabric has 'HELP US' cut out of it, showing light blue and white patterned fabric underneath. Red stitching outlines the letters.Pink piece of rectangular fabric. Made of several different pieces in different shades of pink and white embroidered together using yellow thread.Dark piece of rectangular fabric. 'This is HARD....' written across it in white pen.Rectangular piece of white fabric. 'CURE LONG COVID' written across it in red pen.
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Valerie Eliot Smith @valerieeliotsmith.bsky.social · 07/01/2025
"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...
theguardian.com
A new era of lies: Mark Zuckerberg has just ushered in an extinction-level event for truth on social media | Chris Stokel-Walker
The Meta boss’s decision to get rid of the platform’s 40,000 moderators has set the stage for a fact-free four years online, says author Chris Stokel-Walker
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KarenG @tenaciousmumma.bsky.social · 07/01/2025
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 🙏
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Long Covid Advocacy @longcovidadvoc.com · 07/01/2025
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?
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lifeatthewindow.bsky.social @lifeatthewindow.bsky.social · 07/01/2025
“The fact that the medical community is confounded by it is not an excuse for dismissing and neglecting sufferers.” #pwME #MECFS
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Daniel Padfield @padpadpadpad.bsky.social · 07/01/2025
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...
thereforme.uk
“This is not about not trying hard enough”
A glimpse into daily life with very severe ME
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ThereForME @thereforme.bsky.social · 07/01/2025
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...
thereforme.uk
“This is not about not trying hard enough”
A glimpse into daily life with very severe ME
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