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Dialogues ME/CFS @dialoguesmecfs.bsky.social · 12/05/2025

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

Bateman Horne Center @batemanhornecenter.bsky.social · 09/05/2025

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

Graphic with a stethoscope and a doctor’s arm, displaying the text 'CLINICAL CARE GUIDE Managing ME/CFS, Long COVID, & IACCs.' The Bateman Horne Center and MERC logos are at the bottom, with a background of a deep blue gradient.

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DecodeME @decodemestudy.bsky.social · 12/05/2025

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.

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Matt Lazell-Fairman @mfairma.bsky.social · 03/05/2025

Just a minute long and achingly beautiful.

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Chris Ponting @cgatist.bsky.social · 28/04/2025

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

openresearch.nihr.ac.uk

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.

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Dialogues ME/CFS @dialoguesmecfs.bsky.social · 27/03/2025

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.

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Iain Porter @iainkporter.bsky.social · 26/03/2025

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

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Dialogues ME/CFS @dialoguesmecfs.bsky.social · 14/03/2025

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.

youtube.com

Two Lives, One Story

YouTube video by Hope4MEFibroNI

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David Tuller @davetuller1.bsky.social · 12/03/2025

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...

facebook.com

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...

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marydimmock.bsky.social @marydimmock.bsky.social · 12/03/2025

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...

drive.google.com

Community Letter re Cochrane Mar 2025.pdf

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marydimmock.bsky.social @marydimmock.bsky.social · 12/03/2025

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...

drive.google.com

Author Open Letter to Cochrane Mar 2025.pdf

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Hilda Bastian @hildabast.bsky.social · 24/01/2025

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

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…

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Dialogues ME/CFS @dialoguesmecfs.bsky.social · 19/01/2025

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.

dialogues-mecfs.co.uk

Dialogues for a neglected illness - Dialogues

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Science for ME (S4ME) @s4me.info · 17/12/2024

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...

change.org

Sign the Petition

Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

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Action for ME @actionforme.bsky.social · 16/12/2024

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

News announcement image with a DNA strand in the background. Text reads: ‘First of a kind study to uncover genetic causes of ME.’ Includes logos for Action for ME, The University of Edinburgh, Edinburgh Innovations, and Oxford Nanopore Technologies. Bottom corner has a QR code with labels ‘Our news’ and ‘Research.’

A quote from Sonya Chowdhury, CEO of Action for ME, emphasises that the collaboration centres people with lived experience of ME. The initial study phase focuses on severe cases, ensuring those most affected play a key role in advancing understanding and driving meaningful change.

A quote from Dr Gordon Sanghera, CEO of Oxford Nanopore Technologies, highlights DecodeME as the largest ME/CFS study. He states the next step, SequenceME, uses Oxford Nanopore’s sequencing technology to uncover genetic insights, improving care and enabling personalised medicine for people with ME.

A quote from Professor Chris Ponting of the University of Edinburgh, emphasising the opportunity of SequenceME to utilise world-class technology to address the medical puzzle that is ME, building on the work of DecodeME.

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Dialogues ME/CFS @dialoguesmecfs.bsky.social · 12/12/2024

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.

dialogues-mecfs.co.uk

The Tangled Story of ME/CFS

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Long Covid Advocacy @longcovidadvoc.com · 28/11/2024

📷 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...

wellcomecollection.org

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.

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Tom Kindlon @tomkindlon.bsky.social · 24/11/2024

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

youtube.com

ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

YouTube video by Broken Battery

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Dialogues ME/CFS @dialoguesmecfs.bsky.social · 20/11/2024

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...

youtube.com

Interview with Professor Chris Ponting of the University of Edinburgh

YouTube video by David M Tuller

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Reposted by Dialogues ME/CFS

Chris Ponting @cgatist.bsky.social · 15/11/2024

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

Five important findings of this paper:
One: an expectation that people with ME/CFS will fully recover their work life is unrealistic.
Two: Health and welfare providers need to be realistic and their actions should not discriminate against the most vulnerable from accessing benefits. Providers might be prolonging the ordeal of pwME.
Three: Focusing unduly on returning people to the workplace might hinder interventions aimed at improving life quality.
Four: The number of people with ME symptoms is growing because of Long Covid, so this stress the urgency of more evidence based approach to support them.
Five: More funding needs to go into research to find a cure.
They end by saying "Whereas services and interventions for the group today are costly, they do not, in their current form, appear to have worked to fully rehabilitate more than the exceptional few."

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Dialogues ME/CFS @dialoguesmecfs.bsky.social · 15/11/2024

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

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

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Dialogues ME/CFS @dialoguesmecfs.bsky.social · 12/11/2024

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."

thereforme.uk

From ‘yuppie flu' to ’anti-recovery activists’

Why narratives around ME and Long Covid matter – and how to change them

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Dialogues ME/CFS @dialoguesmecfs.bsky.social · 23/10/2024

One of the very best articles on ME and Long Covid - in The Conversation, by Professor Chris Ponting - with a very personal and fresh slant to it.

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Tom Kindlon @tomkindlon.bsky.social · 05/01/2024

From Maureen Hanson team in US Dysregulation of extracellular vesicle protein cargo in female #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome cases and sedentary controls in response to maximal exercise isevjournals.onlinelibrary.wiley.com/doi/10.1002/... #MEcfs #CFS #PwME

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Dialogues ME/CFS @dialoguesmecfs.bsky.social · 03/01/2024

"ME/CFS – the Severely and Very Severely Affected" the Special Issue reprint book edited by Ken Friedman, is now published online, freely accessible on the MDPI Books platform: mdpi.com/books/book/8... and can be purchased as a paper copy.

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Dialogues ME/CFS @dialoguesmecfs.bsky.social · 02/01/2024

Encouraging research in preprint. www.sciencedirect.com/science/arti... and a fascinating interview with Liisa Selin who was involved, along with Mady Hornig, Nancy Klimas and others. Video from two years ago.. youtube.com/watch?v=aV2J...

youtube.com

Dr. Amy Proal interviews Dr. Liisa Selin about T cell exhaustion and viral activity in ME/CFS

Dr. Liisa Selin is a professor of pathology at the University of Massachusetts Medical School. In her work as a viral immunologist, she and her colleague Dr....

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Tom Kindlon @tomkindlon.bsky.social · 27/12/2023

"Study helps explain #postCOVID exercise intolerance: Exercise intolerance is one symptom associated with #longCOVID. A new study helps explain its cause" (December 19) news.yale.edu/2023/12/19/s... #PwLC #PASC

In the new study, 55 patients were evaluated for post-COVID exercise intolerance, including 41 who showed no evidence of heart or lung limitations after initial tests. They then underwent iCPET.

“We found that despite the fact that the heart was pumping oxygenated blood that the lungs were providing adequate amounts of oxygen for, the extraction of oxygen by the body’s tissues was compromised in patients who had symptoms of exercise intolerance after COVID,” said Peter Kahn, a pulmonary and critical care fellow at Yale School of Medicine and lead author of the study.

The study, which follows an earlier study from the research group that yielded molecular insights into the origins of exercise intolerance, also offers patients insight into their symptoms.

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Ed Yong is offline @edyong209.bsky.social · 14/12/2023

Astonishing visual essay from Giorgia Lupi about her 1374 days with long covid. This captures the experience in a really powerful way. www.nytimes.com/interactive/...

nytimes.com

Opinion | 1,374 Days: My Life With Long Covid

Chronic illness has a way of picking apart your mind and breaking your heart.

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Tom Kindlon @tomkindlon.bsky.social · 22/11/2023

(UK) Can you help? Request for blood samples for ME / CFS study. Dr Caroline Dalton at Sheffield Hallam University is leading a study on microclots and other blood factors in ME/CFS. Find out more at: docs.google.com/forms/d/e/1F... #MyalgicEncephalomyelitis #MEResearch #CFS #MEcfs #PwME

Request for blood samples to study microclots and other blood factors in ME/CFS. Are you female, over 18 and able to attend a laboratory in Sheffield to provide a blood sample between November 28 and December 28 2023? We need people with ME and healthy controls to study the biomolecular basis of ME/CFS! Find out more via the link on the text of this post.

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Dialogues ME/CFS @dialoguesmecfs.bsky.social · 05/11/2023

www.youtube.com/watch?v=Nu6H... A very interesting interview with Dr Amy Proal about her work with Polybio on long covid and the potential for persistent viruses to cause chronic illness, including ME/CFS.

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ME/CFS News @mecfsnews.bsky.social · 01/11/2023

DecodeME study needs more participants with ME/CFS in the UK. The more, the better. The recruitment will end in two weeks. If you have been sent a spit kit but did not return it, please return it now. Sign up here www.decodeme.org.uk/portal/

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Dialogues ME/CFS @dialoguesmecfs.bsky.social · 27/10/2023

www.youtube.com/watch?v=6zks... 'The Tangled Story of ME/CFS:Controversy, Denigration and Ignorance' now on youtube. From 'Dialogues for a neglected illness,' a Wellcome Public Engagement Fund Award project, covers history and wider context for ME and CFS. More videos at www.dialogues-mecfs.co.uk

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Dialogues ME/CFS @dialoguesmecfs.bsky.social · 23/10/2023

www.youtube.com/watch?v=278v... Videos of the PolyBio symposium held on Friday are available on youtube. Lots of exciting work being done by so many researchers. Thank you so much.

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Dialogues ME/CFS @dialoguesmecfs.bsky.social · 20/10/2023

meassociation.org.uk/2023/10/the-... At last, long awaited post-mortem research arrangements for people with ME. This is something so many people have tried to arrange in the past, both PWME who wished to donate and those engaged in ME research.

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Dialogues ME/CFS @dialoguesmecfs.bsky.social · 17/10/2023

www.decodeme.org.uk/portal/ Please help. Only a few weeks left to sign up for Decode ME. They need 25,000 PWME asked to submit spit samples, so several thousand still needed if possible. Also very important for people to return their samples in time! Then the exciting work starts..

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