Thank you Anil, for speaking up for such terribly ill young people and I am so very sorry you have been more ill.

Edith CL@edithcl.bsky.social · last yr.

#ME/cfs #MEawareness #MEawarenessday #longcovidinducedME #longcovid youtube.com/watch?v=P4Y3...

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

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.

Just a minute long and achingly beautiful.

Tilman Andris@tilmanandris.bsky.social · last yr.

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?...

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

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.

Peter Stefanovic@peterstefanovic.bsky.social · last yr.

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"

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

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

youtube.com

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...

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...

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...

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

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

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.

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...

Sign the Petition

Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

change.org

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

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

dialogues-mecfs.co.uk

docs.google.com/forms/d/e/1F...

Add your signature to a Research Case Definition Consensus Statement for ME/CFS

For decades, research into Myalgic Encephalomyelitis (ME), sometimes called ME/CFS, has been hampered by heterogeneous diagnostic criteria and the inclusion of participants who may not actually have M...

docs.google.com

📷 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...

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

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

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

YouTube video by Broken Battery

youtube.com

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...

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

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

youtube.com

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

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."

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

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

thereforme.uk

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.

Tom Kindlon@tomkindlon.bsky.social · 2y ago

🧵 "Ignored, blamed, & sometimes left to die – a leading expert in ME explains the origins of a modern medical scandal" theconversation.com/ignored-blam... There's an audio version of this long but highly recommended article at link This is a thread with some extracts #MEcfs #CFS #pwME 1/

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

"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.

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...

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....

youtube.com

"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