Oonagh Cousins
@oonaghcousins.bsky.social
Reposted by Oonagh Cousins
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...
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...
March 18, 2025 at 9:15 AM
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...
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...
Reposted by Oonagh Cousins
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.”
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.”
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...
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...
March 18, 2025 at 9:45 AM
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.”
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.”
Reposted by Oonagh Cousins
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.
Lorenz Hess hat eine Motion für eine Nationale Strategie zu #MECFS #LongCovid #PostVac eingereicht. Jetzt entscheidet der Bundesrat, ob er die Motion dem Parlament zur Annahme empfiehlt. BR Baume Schneider hat signalisiert, dass sie das Thema ernst nimmt. @sgme.bsky.social @swisslc-kids.bsky.social
February 9, 2025 at 1:58 PM
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
Love this piece from Rebecca Logan 👇🏻
#ThereForME
We've got a great #ThereForME post today from Rebecca Logan.
Rebecca is a former nurse who shares her experiences of #LongCovid, learning about ME and her work campaigning with Hope 4 ME & Fibro NI
www.thereforme.uk/p/too-ill-to...
Rebecca is a former nurse who shares her experiences of #LongCovid, learning about ME and her work campaigning with Hope 4 ME & Fibro NI
www.thereforme.uk/p/too-ill-to...
Too ill to treat?
A former nurse shares her experiences campaigning for better care in Northern Ireland
www.thereforme.uk
February 4, 2025 at 9:28 AM
"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
Love this piece from Rebecca Logan 👇🏻
#ThereForME
Reposted by Oonagh Cousins
Really well done piece out today from Rebecca Logan, telling her story and how it led to campaigning for better care👇
We've got a great #ThereForME post today from Rebecca Logan.
Rebecca is a former nurse who shares her experiences of #LongCovid, learning about ME and her work campaigning with Hope 4 ME & Fibro NI
www.thereforme.uk/p/too-ill-to...
Rebecca is a former nurse who shares her experiences of #LongCovid, learning about ME and her work campaigning with Hope 4 ME & Fibro NI
www.thereforme.uk/p/too-ill-to...
Too ill to treat?
A former nurse shares her experiences campaigning for better care in Northern Ireland
www.thereforme.uk
February 4, 2025 at 9:20 AM
Really well done piece out today from Rebecca Logan, telling her story and how it led to campaigning for better care👇
Reposted by Oonagh Cousins
"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.
It shatters the illusion, but its not just ME and Long Covid.
We've got a great #ThereForME post today from Rebecca Logan.
Rebecca is a former nurse who shares her experiences of #LongCovid, learning about ME and her work campaigning with Hope 4 ME & Fibro NI
www.thereforme.uk/p/too-ill-to...
Rebecca is a former nurse who shares her experiences of #LongCovid, learning about ME and her work campaigning with Hope 4 ME & Fibro NI
www.thereforme.uk/p/too-ill-to...
Too ill to treat?
A former nurse shares her experiences campaigning for better care in Northern Ireland
www.thereforme.uk
February 4, 2025 at 9:20 AM
"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.
It shatters the illusion, but its not just ME and Long Covid.
Reposted by Oonagh Cousins
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...
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...
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...
www.change.org
February 2, 2025 at 6:04 PM
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...
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...
Reposted by Oonagh Cousins
📣 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
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
February 2, 2025 at 3:19 PM
📣 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
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
Reposted by Oonagh Cousins
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."
January 30, 2025 at 5:04 PM
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."
Reposted by Oonagh Cousins
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
January 22, 2025 at 2:22 AM
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
Reposted by Oonagh Cousins
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. 👇
We #pwME need to be able to get healthcare safely. Answers to post below. 👇
📣 New blog from @karenlhargrave.bsky.social with @patientsafetylearning.org - exploring accessibility issues in NHS care for people with ME and Long Covid
We want to hear from you! Read on to the next post for how you can share your experiences.
www.pslhub.org/learn/improv...
We want to hear from you! Read on to the next post for how you can share your experiences.
www.pslhub.org/learn/improv...
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
www.pslhub.org
January 30, 2025 at 11:54 AM
Reposted by Oonagh Cousins
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/p/can-the-de...
Can the decline of two-party politics be reversed?
Why electoral systems can change how much faith people have in democracy
samf.substack.com
January 30, 2025 at 8:50 AM
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/p/can-the-de...
Reposted by Oonagh Cousins
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...
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...
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
www.theguardian.com
January 28, 2025 at 10:31 PM
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...
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...
Reposted by Oonagh Cousins
🆕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
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
www.pslhub.org
January 30, 2025 at 8:54 AM
🆕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
Reposted by Oonagh Cousins
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 👇
We’re collecting community experiences and would love to hear from you 👇
📣 New blog from @karenlhargrave.bsky.social with @patientsafetylearning.org - exploring accessibility issues in NHS care for people with ME and Long Covid
We want to hear from you! Read on to the next post for how you can share your experiences.
www.pslhub.org/learn/improv...
We want to hear from you! Read on to the next post for how you can share your experiences.
www.pslhub.org/learn/improv...
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
www.pslhub.org
January 30, 2025 at 9:29 AM
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 👇
We’re collecting community experiences and would love to hear from you 👇
Reposted by Oonagh Cousins
📣 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
#ResearchLongCovid
January 30, 2025 at 9:10 AM
📣 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
#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 👇
We’re collecting community experiences and would love to hear from you. Details below 👇
📣 New blog from @karenlhargrave.bsky.social with @patientsafetylearning.org - exploring accessibility issues in NHS care for people with ME and Long Covid
We want to hear from you! Read on to the next post for how you can share your experiences.
www.pslhub.org/learn/improv...
We want to hear from you! Read on to the next post for how you can share your experiences.
www.pslhub.org/learn/improv...
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
www.pslhub.org
January 30, 2025 at 9:57 AM
#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 👇
We’re collecting community experiences and would love to hear from you. Details below 👇
Reposted by Oonagh Cousins
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. 🧵
I never thought a day would come when I would write a post this critical about the Cochrane Collaboration. But today was that day:
absolutelymaybe.plos.org/2025/01/24/w...
#mecfs
absolutelymaybe.plos.org/2025/01/24/w...
#mecfs
When Journal, Scientific Society, and Community Values Clash - Absolutely Maybe
A process I’ve been involved with at a journal recently exploded. It was meant to resolve a controversy about a publication, not…
absolutelymaybe.plos.org
January 29, 2025 at 8:57 AM
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. 🧵
Reposted by Oonagh Cousins
Impressive report by @crunchme.bsky.social
This will be useful for advocacy to increase research funding. 👇
crunchme.notion.site/homepage
This will be useful for advocacy to increase research funding. 👇
crunchme.notion.site/homepage
CrunchME
The evidence and insight base to crunch infection-associated chronic illnesses.
crunchme.notion.site
January 28, 2025 at 7:25 PM
Impressive report by @crunchme.bsky.social
This will be useful for advocacy to increase research funding. 👇
crunchme.notion.site/homepage
This will be useful for advocacy to increase research funding. 👇
crunchme.notion.site/homepage
Reposted by Oonagh Cousins
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 promising discussions, let’s hope it can translate to meaningful action and change for people with #ME 🤞🏽
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...
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
www.thereforme.uk
January 28, 2025 at 7:17 PM
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 promising discussions, let’s hope it can translate to meaningful action and change for people with #ME 🤞🏽
Reposted by Oonagh Cousins
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...
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...
January 27, 2025 at 2:11 PM
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...
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...
Reposted by Oonagh Cousins
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!
It was great to hear many of our priorities for the delivery plan resonated - but also to have some fresh insights from the community!
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...
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
www.thereforme.uk
January 28, 2025 at 10:33 AM
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!
It was great to hear many of our priorities for the delivery plan resonated - but also to have some fresh insights from the community!
Reposted by Oonagh Cousins
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...
@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...
January 21, 2025 at 9:32 AM
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...
@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...
Reposted by Oonagh Cousins
Forever thankful to David Tuller for all his hard work debunking the myth that my illness isn’t a real biological condition
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...
@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...
January 21, 2025 at 11:41 AM
Forever thankful to David Tuller for all his hard work debunking the myth that my illness isn’t a real biological condition
Reposted by Oonagh Cousins
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
"When bad science becomes orthodoxy: Reflections from a decade of debunking the PACE trial"
www.thereforme.uk/p/when-bad-s...
#MEcfs #LongCovid #PACEtrial
January 21, 2025 at 5:48 PM
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
"When bad science becomes orthodoxy: Reflections from a decade of debunking the PACE trial"
www.thereforme.uk/p/when-bad-s...
#MEcfs #LongCovid #PACEtrial