Dialogues ME/CFS
@dialoguesmecfs.bsky.social
https://www.dialogues-mecfs.co.uk Website with videos created by Natalie Boulton & Josh Biggs with a Wellcome Public Engagement Fund Award. Professionals and patients explain key aspects of #ME/CFS and a longer film explores the wider context and history.
Thank you Anil, for speaking up for such terribly ill young people and I am so very sorry you have been more ill.
May 12, 2025 at 3:55 PM
Thank you Anil, for speaking up for such terribly ill young people and I am so very sorry you have been more ill.
Reposted by Dialogues ME/CFS
The Clinical Care Guide for #MECFS, #LongCOVID & IACCs is here! Download, share, and use it to support better care. BHC's approach is now freely available—designed to help providers manage complex conditions with clarity & compassion. Download it. Share it. Use it. bit.ly/432YdzF
May 9, 2025 at 7:56 PM
The Clinical Care Guide for #MECFS, #LongCOVID & IACCs is here! Download, share, and use it to support better care. BHC's approach is now freely available—designed to help providers manage complex conditions with clarity & compassion. Download it. Share it. Use it. bit.ly/432YdzF
Reposted by Dialogues ME/CFS
This #WorldMEday we want to take a pause & recognise the challenges, stigma & neglect that many #pwME face. We hope that #DecodeME can pave the way forward in accelerating research into M.E./CFS & will help to set a standard in research to include voices of pw lived experiences.
May 12, 2025 at 12:43 PM
This #WorldMEday we want to take a pause & recognise the challenges, stigma & neglect that many #pwME face. We hope that #DecodeME can pave the way forward in accelerating research into M.E./CFS & will help to set a standard in research to include voices of pw lived experiences.
Reposted by Dialogues ME/CFS
Just a minute long and achingly beautiful.
I return to the poem “Spring” by Lilan Patri every year. Wonderful. Also relatable, unfortunately.
#MEcfs #spring
(Apologies to those too ill to watch or listen.)
youtu.be/55HpMb9bF_I?...
#MEcfs #spring
(Apologies to those too ill to watch or listen.)
youtu.be/55HpMb9bF_I?...
#BedFest 2017: Lilan Patri (Berlin, Germany)
YouTube video by The ME Action Network
youtu.be
May 3, 2025 at 12:50 PM
Just a minute long and achingly beautiful.
Reposted by Dialogues ME/CFS
Want to use UK Biobank data to study ME/CFS? Can't decide which of the 5,354 UKB participants with evidence of ME/CFS to choose as cases? In this preprint, we consider what case/control definitions to apply. openresearch.nihr.ac.uk/articles/5-3... #pwME #mecfs
NIHR Open Research Article: Defining a High-Quality Myalgic Encephalomyelitis/Chronic Fatigue Syndrome cohort in UK Biobank.
Read the latest article version by Gemma L. Samms, Chris P. Ponting, at NIHR Open Research.
openresearch.nihr.ac.uk
April 28, 2025 at 9:52 AM
Want to use UK Biobank data to study ME/CFS? Can't decide which of the 5,354 UKB participants with evidence of ME/CFS to choose as cases? In this preprint, we consider what case/control definitions to apply. openresearch.nihr.ac.uk/articles/5-3... #pwME #mecfs
I just signed the petition urging the Government to invest in research to help those suffering from Long Covid. Will you sign too? you.38degrees.org.uk/petitions/in...
Invest in Long Covid & M.E. Research: Thousands of Children DISABLED, DISCHARGED, & HIDDEN FROM VIEW
• Five years after the start of the Covid pandemic, thousands remain severely ill - Many housebound or often bedbound, unable to attend school, work, or take part in daily life. Disabled, discha...
you.38degrees.org.uk
March 27, 2025 at 7:27 PM
I just signed the petition urging the Government to invest in research to help those suffering from Long Covid. Will you sign too? you.38degrees.org.uk/petitions/in...
Sadly the man who once spoke up for severely ill ME patients, now seems intent on helping to destroy many of them. He used to seem honourable and well intentioned, but at 38 I suspect he is guided by a desire to please seniors around him, rather than by humane principles. He's lost my vote.
Jeez. Treasury Secretary Darren Jones compares Labour's welfare cuts to cutting his kids' pocket money when explaining the Government's impact assessment
"I'm going to cut your pocket money by £10 a week but you have to go and get a Saturday job"
"I'm going to cut your pocket money by £10 a week but you have to go and get a Saturday job"
March 27, 2025 at 4:16 PM
Sadly the man who once spoke up for severely ill ME patients, now seems intent on helping to destroy many of them. He used to seem honourable and well intentioned, but at 38 I suspect he is guided by a desire to please seniors around him, rather than by humane principles. He's lost my vote.
Reposted by Dialogues ME/CFS
DWP is using a sleight of hand in its disability benefit cuts impact assessment: Actual increase in poverty is closer to 400,000, not the 250,000 in the impact assessment.
Quick thread explaining why. 🧵1/7
Quick thread explaining why. 🧵1/7
March 26, 2025 at 5:06 PM
DWP is using a sleight of hand in its disability benefit cuts impact assessment: Actual increase in poverty is closer to 400,000, not the 250,000 in the impact assessment.
Quick thread explaining why. 🧵1/7
Quick thread explaining why. 🧵1/7
www.youtube.com/watch?v=A2CE... A simple honest and touching short video highlighting the wilful ignorance that has abandoned so many patients to lives of isolation and ill health. How courageous of these two women to have used their limited energy to educate patients, nurses and doctors.
Two Lives, One Story
YouTube video by Hope4MEFibroNI
www.youtube.com
March 14, 2025 at 5:31 PM
www.youtube.com/watch?v=A2CE... A simple honest and touching short video highlighting the wilful ignorance that has abandoned so many patients to lives of isolation and ill health. How courageous of these two women to have used their limited energy to educate patients, nurses and doctors.
Reposted by Dialogues ME/CFS
Mary Dimmock and Todd Davenport, two members of the team designated by @cochranecollab to write a new protocol and review of exercise therapy for ME/CFS, have written to Cochrane and also to the ME/CFS community. www.facebook.com/david.tuller...
David Tuller
Two members of the author group designated by Cochrane to write a new protocol and review of exercise therapies for ME/CFS have sent a formal letter to Cochrane about their shock and dismay at the...
www.facebook.com
March 12, 2025 at 12:27 PM
Mary Dimmock and Todd Davenport, two members of the team designated by @cochranecollab to write a new protocol and review of exercise therapy for ME/CFS, have written to Cochrane and also to the ME/CFS community. www.facebook.com/david.tuller...
Reposted by Dialogues ME/CFS
Todd and I also wrote an open letter to the #MECFS community to:
a) share the final version of the draft protocol for the ME/CFS exercise review as submitted to Cochrane in Feb 2023
b) solicit comments as originally promised (2/2)
@sunsopeningband.bsky.social
drive.google.com/file/d/1JK06...
a) share the final version of the draft protocol for the ME/CFS exercise review as submitted to Cochrane in Feb 2023
b) solicit comments as originally promised (2/2)
@sunsopeningband.bsky.social
drive.google.com/file/d/1JK06...
Community Letter re Cochrane Mar 2025.pdf
drive.google.com
March 12, 2025 at 1:08 PM
Todd and I also wrote an open letter to the #MECFS community to:
a) share the final version of the draft protocol for the ME/CFS exercise review as submitted to Cochrane in Feb 2023
b) solicit comments as originally promised (2/2)
@sunsopeningband.bsky.social
drive.google.com/file/d/1JK06...
a) share the final version of the draft protocol for the ME/CFS exercise review as submitted to Cochrane in Feb 2023
b) solicit comments as originally promised (2/2)
@sunsopeningband.bsky.social
drive.google.com/file/d/1JK06...
Reposted by Dialogues ME/CFS
Todd Davenport and I were on Cochrane's author team for a full update of their #MECFS exercise review. We wrote this open letter to them, critical of their decision to disband the effort, called for withdrawal of current review
@sunsopeningband.bsky.social (1/2)
drive.google.com/file/d/12__3...
@sunsopeningband.bsky.social (1/2)
drive.google.com/file/d/12__3...
Author Open Letter to Cochrane Mar 2025.pdf
drive.google.com
March 12, 2025 at 1:00 PM
Todd Davenport and I were on Cochrane's author team for a full update of their #MECFS exercise review. We wrote this open letter to them, critical of their decision to disband the effort, called for withdrawal of current review
@sunsopeningband.bsky.social (1/2)
drive.google.com/file/d/12__3...
@sunsopeningband.bsky.social (1/2)
drive.google.com/file/d/12__3...
Reposted by Dialogues ME/CFS
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 24, 2025 at 5:17 AM
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
www.dialogues-mecfs.co.uk
I'm afraid the Dialogues website has been off-line for a couple of days - not caused by us. It should all be OK now.
I'm afraid the Dialogues website has been off-line for a couple of days - not caused by us. It should all be OK now.
Dialogues for a neglected illness - Dialogues
www.dialogues-mecfs.co.uk
January 19, 2025 at 1:24 PM
www.dialogues-mecfs.co.uk
I'm afraid the Dialogues website has been off-line for a couple of days - not caused by us. It should all be OK now.
I'm afraid the Dialogues website has been off-line for a couple of days - not caused by us. It should all be OK now.
Reposted by Dialogues ME/CFS
Cochrane, by dropping their planned review of exercise for #MECFS, disrespects the energy and time of those involved in that review AND leaves the existing review supporting exercise for ME/CFS and #LongCovid.
Our petition calls for its withdrawal,
www.change.org/p/cochrane-w...
Our petition calls for its withdrawal,
www.change.org/p/cochrane-w...
Sign the Petition
Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
www.change.org
December 17, 2024 at 10:30 AM
Cochrane, by dropping their planned review of exercise for #MECFS, disrespects the energy and time of those involved in that review AND leaves the existing review supporting exercise for ME/CFS and #LongCovid.
Our petition calls for its withdrawal,
www.change.org/p/cochrane-w...
Our petition calls for its withdrawal,
www.change.org/p/cochrane-w...
Reposted by Dialogues ME/CFS
1/2
🚨 SequenceME
A groundbreaking partnership has launched today, bringing together experts from Action for ME, Oxford Nanopore Technologies & the University of Edinburgh.
Read more 👇
www.actionforme.org.uk/news/sequenc...
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #MEResearch
🚨 SequenceME
A groundbreaking partnership has launched today, bringing together experts from Action for ME, Oxford Nanopore Technologies & the University of Edinburgh.
Read more 👇
www.actionforme.org.uk/news/sequenc...
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #MEResearch
December 16, 2024 at 9:30 AM
1/2
🚨 SequenceME
A groundbreaking partnership has launched today, bringing together experts from Action for ME, Oxford Nanopore Technologies & the University of Edinburgh.
Read more 👇
www.actionforme.org.uk/news/sequenc...
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #MEResearch
🚨 SequenceME
A groundbreaking partnership has launched today, bringing together experts from Action for ME, Oxford Nanopore Technologies & the University of Edinburgh.
Read more 👇
www.actionforme.org.uk/news/sequenc...
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #MEResearch
www.dialogues-mecfs.co.uk/films/the-ta...
'The Tangled Story of ME/CFS', one of the 'Dialogues for a neglected illness' films, now has German subtitles, translated by ME-AKTUELL.DE as well as English subtitles.
'The Tangled Story of ME/CFS', one of the 'Dialogues for a neglected illness' films, now has German subtitles, translated by ME-AKTUELL.DE as well as English subtitles.
The Tangled Story of ME/CFS
www.dialogues-mecfs.co.uk
December 12, 2024 at 7:43 PM
www.dialogues-mecfs.co.uk/films/the-ta...
'The Tangled Story of ME/CFS', one of the 'Dialogues for a neglected illness' films, now has German subtitles, translated by ME-AKTUELL.DE as well as English subtitles.
'The Tangled Story of ME/CFS', one of the 'Dialogues for a neglected illness' films, now has German subtitles, translated by ME-AKTUELL.DE as well as English subtitles.
Reposted by Dialogues ME/CFS
📷 Beautiful & emotive photo exhibition with testimony at The Wellcome Collection of #pwME by Jeremy Jeffs
Will let the photos do the talking in this 🧵
wellcomecollection.org/stories/livi...
Will let the photos do the talking in this 🧵
wellcomecollection.org/stories/livi...
Living with ME
Nine people with ME reveal their unremitting struggles as they negotiate life with their illness, including their battles to be believed, diagnosed and supported.
wellcomecollection.org
November 28, 2024 at 2:47 PM
📷 Beautiful & emotive photo exhibition with testimony at The Wellcome Collection of #pwME by Jeremy Jeffs
Will let the photos do the talking in this 🧵
wellcomecollection.org/stories/livi...
Will let the photos do the talking in this 🧵
wellcomecollection.org/stories/livi...
Reposted by Dialogues ME/CFS
ME/CFS Scandal Explainer
www.youtube.com/watch?v=RiwX...
Description from Science for ME:
An excellent & informative video by forum member Adam pwme containing all the important details in the history of ME & what has become "the greatest medical scandal of the 21st-century"
#MEcfs #CFS
www.youtube.com/watch?v=RiwX...
Description from Science for ME:
An excellent & informative video by forum member Adam pwme containing all the important details in the history of ME & what has become "the greatest medical scandal of the 21st-century"
#MEcfs #CFS
ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
YouTube video by Broken Battery
www.youtube.com
November 24, 2024 at 1:47 PM
ME/CFS Scandal Explainer
www.youtube.com/watch?v=RiwX...
Description from Science for ME:
An excellent & informative video by forum member Adam pwme containing all the important details in the history of ME & what has become "the greatest medical scandal of the 21st-century"
#MEcfs #CFS
www.youtube.com/watch?v=RiwX...
Description from Science for ME:
An excellent & informative video by forum member Adam pwme containing all the important details in the history of ME & what has become "the greatest medical scandal of the 21st-century"
#MEcfs #CFS
Reposted by Dialogues ME/CFS
My submission on the new Canadian draft recommendations for Long Covid
#LongCovid #MECFS #pwME @exceedhergrasp1.bsky.social @donoharmbc.bsky.social
thesciencebit.net/2024/11/21/m...
#LongCovid #MECFS #pwME @exceedhergrasp1.bsky.social @donoharmbc.bsky.social
thesciencebit.net/2024/11/21/m...
My submission on the new Canadian draft recommendations for Long Covid
From Jaime Seltzer over on Bluesky: Please call for this one, guys, this is a horrific turn. There is something at the core of these folks that cannot accept patient narrative as a source of real data...
thesciencebit.net
November 21, 2024 at 11:42 PM
My submission on the new Canadian draft recommendations for Long Covid
#LongCovid #MECFS #pwME @exceedhergrasp1.bsky.social @donoharmbc.bsky.social
thesciencebit.net/2024/11/21/m...
#LongCovid #MECFS #pwME @exceedhergrasp1.bsky.social @donoharmbc.bsky.social
thesciencebit.net/2024/11/21/m...
This is moving and so interesting and shocking to hear Prof Chris Ponting speak of his more recent experiences with ME research, his previous lack of involvement in ME research and the background and response to his recent article in The Conversation www.youtube.com/watch?v=npbH...
Interview with Professor Chris Ponting of the University of Edinburgh
YouTube video by David M Tuller
www.youtube.com
November 20, 2024 at 5:15 PM
This is moving and so interesting and shocking to hear Prof Chris Ponting speak of his more recent experiences with ME research, his previous lack of involvement in ME research and the background and response to his recent article in The Conversation www.youtube.com/watch?v=npbH...
Reposted by Dialogues ME/CFS
Real-world #MEcfs data from Norway highlighting the employment & welfare problems that the UK (& other) Governments need to face up to, and not *ignore* or misrepresent. @gwynnemp.bsky.social
November 15, 2024 at 2:33 PM
Real-world #MEcfs data from Norway highlighting the employment & welfare problems that the UK (& other) Governments need to face up to, and not *ignore* or misrepresent. @gwynnemp.bsky.social
For new followers, our 2011 film on Vimeo. “If I could make everyone in the world see just one film, this would be the film I’d choose. It’s my film of the year. It’ll be my film of the decade.”Scott Jordan Harris Chicago Sun-Times
voicesfromtheshadowsfilm.co.uk Free on Vimeo use promo code VOICES
voicesfromtheshadowsfilm.co.uk Free on Vimeo use promo code VOICES
Voices from the Shadows
\'Voices from the Shadows\'. Welcome to the website for the documentary - \'Voices from the Shadows\' released in 2011. Voices from the
voicesfromtheshadowsfilm.co.uk
November 15, 2024 at 7:28 PM
For new followers, our 2011 film on Vimeo. “If I could make everyone in the world see just one film, this would be the film I’d choose. It’s my film of the year. It’ll be my film of the decade.”Scott Jordan Harris Chicago Sun-Times
voicesfromtheshadowsfilm.co.uk Free on Vimeo use promo code VOICES
voicesfromtheshadowsfilm.co.uk Free on Vimeo use promo code VOICES
www.thereforme.uk/p/from-yuppi...
Do read this article by Karen Hargrove, a founder of “There for ME”. She says: "One of my main takeaways from years working on narratives is that narratives aren’t fixtures in the world, they’re something we all have the power to influence."
Do read this article by Karen Hargrove, a founder of “There for ME”. She says: "One of my main takeaways from years working on narratives is that narratives aren’t fixtures in the world, they’re something we all have the power to influence."
From ‘yuppie flu' to ’anti-recovery activists’
Why narratives around ME and Long Covid matter – and how to change them
www.thereforme.uk
November 12, 2024 at 5:02 PM
www.thereforme.uk/p/from-yuppi...
Do read this article by Karen Hargrove, a founder of “There for ME”. She says: "One of my main takeaways from years working on narratives is that narratives aren’t fixtures in the world, they’re something we all have the power to influence."
Do read this article by Karen Hargrove, a founder of “There for ME”. She says: "One of my main takeaways from years working on narratives is that narratives aren’t fixtures in the world, they’re something we all have the power to influence."