We’ve already had over 2000 responses - thank you to everyone who’s taken part so far 🧡
Take part, read our FAQs, and find out more here: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/
We’ve already had over 2000 responses - thank you to everyone who’s taken part so far 🧡
Take part, read our FAQs, and find out more here: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/
🧵
🧵
Find out how @kacheston.bsky.social, from our Department of Sociology and @durhamimh.bsky.social, is collaborating with @actionforme.bsky.social to understand the impact of this condition: www.durham.ac.uk/news-events/...
Find out how @kacheston.bsky.social, from our Department of Sociology and @durhamimh.bsky.social, is collaborating with @actionforme.bsky.social to understand the impact of this condition: www.durham.ac.uk/news-events/...
It has been such a privilege to get to work on this with such a wonderful, inspiring team at @actionforme.bsky.social, including our brilliant Patient and Public Involvement Group, made up of people with lived experience of ME and Long Covid.
For more information, our FAQs, and to take part, head to our web page: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/
Thank you for supporting our research💙
🤝in collaboration with
@durhamimh.bsky.social @kacheston.bsky.social
It has been such a privilege to get to work on this with such a wonderful, inspiring team at @actionforme.bsky.social, including our brilliant Patient and Public Involvement Group, made up of people with lived experience of ME and Long Covid.
The 5 yearly survey of people in the UK with ME/CFS will open on Monday 13th October. It has been developed by AfME in collaboration with @kacheston.bsky.social Dr Katherine Cheston at Durham University.
www.actionforme.org.uk/research-cam...
#MEcfs #PwME #CFS
The 5 yearly survey of people in the UK with ME/CFS will open on Monday 13th October. It has been developed by AfME in collaboration with @kacheston.bsky.social Dr Katherine Cheston at Durham University.
www.actionforme.org.uk/research-cam...
#MEcfs #PwME #CFS
"I have spent the vast majority of my 20s in bed and alone in the darkness and silence"
"I have spent the vast majority of my 20s in bed and alone in the darkness and silence"
📅Opens 10am, Monday 13th October - 27th January 2026
📅Opens 10am, Monday 13th October - 27th January 2026
For now, this reflective post explains my motivations - and what I believe a collaborative, cross-sector approach can achieve.
thepolyphony.org/2025/10/09/p...
For now, this reflective post explains my motivations - and what I believe a collaborative, cross-sector approach can achieve.
*Gardening as currently consists of negotiating the obstacle course around giant overgrown fig tree I have failed to work out how to prune for the second year running…
*Gardening as currently consists of negotiating the obstacle course around giant overgrown fig tree I have failed to work out how to prune for the second year running…
www.bmj.com/content/389/...
www.bmj.com/content/389/...
www.bmj.com/content/389/...
#LongCovid
#ME
#LongCovid
#ME
The article discusses the importance of government investment in ME research and features Action for ME Chief Executive, Sonya.
You can read the full article (paywalled) here 👇
www.thetimes.com/article/cc88...
The article discusses the importance of government investment in ME research and features Action for ME Chief Executive, Sonya.
You can read the full article (paywalled) here 👇
www.thetimes.com/article/cc88...
thepolyphony.org/2025/04/24/p...
thepolyphony.org/2025/04/24/p...
The case of ME/CFS evidences, I believe, how health research can fail - illuminating the (all-too-human) barriers to curiosity-driven research, & how story can override science.
Please sign here: organise.network/s/5fe85dfdc26e to show your support, & share widely!
The case of ME/CFS evidences, I believe, how health research can fail - illuminating the (all-too-human) barriers to curiosity-driven research, & how story can override science.
'I will never forget stumbling out of that appointment feeling manipulated, humiliated and traumatised [...] It has left scars; I avoid the NHS as far as humanly possible and struggle to trust clinicians.'
'I will never forget stumbling out of that appointment feeling manipulated, humiliated and traumatised [...] It has left scars; I avoid the NHS as far as humanly possible and struggle to trust clinicians.'
Comment submitted on the Cochrane review: hbprojecttalk.wordpress.com/2025/03/13/i...
Submission to the Cochrane Library Editorial Board: hbprojecttalk.wordpress.com/2025/03/13/i...
...
Comment submitted on the Cochrane review: hbprojecttalk.wordpress.com/2025/03/13/i...
Submission to the Cochrane Library Editorial Board: hbprojecttalk.wordpress.com/2025/03/13/i...
...
One example, from this weekend in Newbury: www.bbc.co.uk/news/article...
One example, from this weekend in Newbury: www.bbc.co.uk/news/article...
The presentation was a personal reflection on our family's experience of ME and the harm that dogmatic beliefs about the condition can cause.
uwe-repository.worktribe.com/output/13780...
The presentation was a personal reflection on our family's experience of ME and the harm that dogmatic beliefs about the condition can cause.
uwe-repository.worktribe.com/output/13780...
📧 kathryn.bromwich@observer.co.uk
#journorequest #longcovid @longcovidsupport.bsky.social @longcovidadvoc.bsky.social
📧 kathryn.bromwich@observer.co.uk
#journorequest #longcovid @longcovidsupport.bsky.social @longcovidadvoc.bsky.social
Hilda's excellent blog post explains the context.
Hilda's excellent blog post explains the context.