People who consider themselves decent, progressive, or left leaning should not only be embarrassed to remain on X in any active capacity - they should be deeply ashamed. The line was crossed long ago.

Letter from @roberthmcmullen.bsky.social in Times today

Excellent review of ME/CFS research in 2025: mecfsscience.org/2025-looking...

“Half the harm that is done in this world is due to people who want to feel important. They don't mean to do harm; but the harm does not interest them. Or they do not see it, or they justify it because they are absorbed in the endless struggle to think well of themselves."​ TS Eliot

I’m sharing this mostly because it took me so long to understand the joke.

1) New factsheet: ME/CFS - information for medical professionals (6 pages). Written by Prof. Emeritus Jonathon Edwards and members of the Science for ME forum. A valuable text, useful to bookmark. A couple of quotes from key paragraphs 👇

Science for ME Fact Sheet 3: ME/CFS Information for Medical Professionals by Prof. Jonathan Edwards and members of the S4ME forum www.s4me.info/docs/Health_... Screenshot from Science for ME weekly update #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Recording from the LOCOME Project webinar now available! The webinar took place on Dec 5 & shared the projects final findings & discussed the next steps. Learn more about these findings, alongside discussions from the panel by watching the recording on our YouTube channel 👇 youtu.be/ITZ3LzZ0NAA

Petition calling on the Norwegian Government to fund a new clinical study of Darartumumab for ME/CFS. c.org/VTqR9NgJqY

1/2: Driving discovery: The ME Association invests £1.1m into pioneering research programme! We are incredibly proud to unveil news of our latest investment into ground-breaking research to help world-leading scientists uncover shared pathways between ME/CFS and Long Covid. #pwME

(1/4) 🧬 @precisionlife.bsky.social has released exciting results from the LOCOME project Using DecodeME and other datasets, LOCOME has identified a number of genetic signals and biological pathways that may be involved in ME.

Delighted how @precisionlife.bsky.social and @actionforme.bsky.social et al used consented @decodemestudy.bsky.social data to -replicate #MEcfs genetic signal & -show its shared/distinct genetics with Long Covid. Next: replicate ME/CFS subtypes w/ targeted therapies www.medrxiv.org/content/10.6...

For the first time, I’ve decided to ask for donations to @actionforme.bsky.social for Christmas, largely due to the work they’ve done with @decodemestudy.bsky.social. Donation can be made here: www.facebook.com/share/1aDFzQ... I will ask for any money raise to go towards their research work.

Rightly lots of debates about growth this weekend - rightly because it was low productivity growth that saw wages entirely flatline during the 2010s.

1) Dr. Michael Peluso will lead a big ME/CFS project called CHIME. The infrastructure first built for HIV, then used for Long Covid in the LIINC study, will now also help with studying pre-pandemic ME/CFS The research will focus on gut biopsies and PET-CT scans.

1) INFO FOR RESEARCHERS: The charity ME Research UK (MERUK) has an open call for PhD-level research funding. Applicants should submit an Outline Proposal Form before Friday, 9 January 2026.

It's Double Votes Weekend at MyGivingCircle. Please help me support ME Research UK by voting for free at : mygivingcircle.org/me-research-...

Available to buy now: One Red Leaf at a Time Greetings Cards. All proceeds go to our #MEcfs research @uoe-igc.bsky.social. Thank you @drjogreer.bsky.social & Dr Clare Raynor! theredtreeandme.substack.com/p/one-red-le... #oneredleafatatime

1/2: MP Tessa Munt has tabled a debate on ME/CFS in Westminster Hall on 19 November 2025 from 4:30pm until 5:30pm   Please write to your MP and ask them to attend the debate next week! https://whatson.parliament.uk/event/cal53589 #pwME #MyalgicE #MECFS #WriteToYourMP #Parliament #Debate

Interested in ME/CFS research? Want to do a PhD with @aryback.bsky.social, @avakhamseh.bsky.social, @sjoerdvbeentjes.bsky.social & @cgatist.bsky.social? Then apply for a *funded* Future Medicine PhD Fellowship. See: www.findaphd.com/phds/project... Please contact us to discuss before applying.

Refreshingly progressive letter in today’s Times: www.thetimes.com/comment/lett...

New Trial By Error Interview--with Irish psychologist Brian Hughes @bmhughes.bsky.social -- Links: crowdfund.berkeley.edu/project/47768 & www.youtube.com/watch?v=0K75... Screenshot is latest update David Tuller @davetuller1.bsky.social has sent out by email to previous donors. #MEcfs #LongCovid

"Graded exercise" is neither supported by evidence nor recommended for people with an illness defined by worsening with exercise. #mecfs #longcovid www.medscape.com/viewarticle/...

Want to join our amazing team for a PhD in ME/CFS research as part of a funded Future Medicine PhD Fellowship? See: www.findaphd.com/phds/project... We offer: Exciting and rigorous science, PPI, truly interdisciplinary and fantastic research culture! Please contact us to discuss before applying!

🧵 Thanks very much to my good friend, Orla Ní Chomhraí, for bravely giving a 6-minute talk about my #MECFS story & work to a crowd of 470 people at the Belvedere College (past pupils’) Union dinner on Friday where I was presented with the Social Justice award. #PwME @irishmecfsassoc.bsky.social 1/

“Grief sits heavily indeed when it must be stared full in the face, day after day. But joy, conversely, soars high in a life stripped bare. How intense is the beauty of the sky or a spring flower when days are bleak.” Another beautifully written blog by @naomiwhitt.bsky.social

@georgemonbiot.bsky.social I’m sure you will be delighted to learn that Dame Clare Gerada, Lady Wessley, has been appointed to the House of Lords. Judging by the responses to the congratulatory RCGP post on X she appears to be nearly as unpopular with drs as she is with ME/CFS patients.

For the first time, Berkeley's Trial By Error crowdfunding campaign has reached 50% of the goal right at the 15-day half-way point. Most times, it's at about a third at this point. If you'd like to donate, here's the link: crowdfund.berkeley.edu/project/47768

Poignant sequel to Rilke’s poem The Panther by Veronica Ashenhurst who has severe ME/CFS: www.westtrestlereview.com/wtr_septembe...

1) We’ve just published our second instalment on the DecodeME results, this timing zooming in on the genes associated with ME/CFS.

1) Another interesting interview of Prof Chris Ponting by David Tuller. They talked about PRIME, a new 4-year project that will provide an infrastructure to accelerate ME/CFS research. It received 0.8 million in funding from the Medical Research Council (MRC).

Our 2025 Big Survey is now open! 🎉 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

A rare October wheelchair outing yesterday. Wakehust was magical in the autumn sunshine.

The research used to claim reliability of a ME/CFS blood test has important limitations, shown here. www.theguardian.com/society/2025...

7) Here’s the link to our article:

1) We’ve written an article about the DecodeME results: what the study measured, what the results show, and why its findings are important.

The big issue of the day: fewer or less than half of children? www.thetimes.com/comment/colu... @susiedent.com please can you adjudicate?

ME Research UK and the ME Association are excited to announce funding to Dr Fatima Labeed and Dr Jackie Cliff to develop a diagnostic test for ME/CFS, expanding on their initial study showing electrical differences in blood cells from people with ME/CFS.  https://meassociation.org.uk/wohx #MECFS

In 2023 I unsuccessful nominated Tom for an honorary degree at Trinity College Dublin with the support of numerous scientists, organisations and others. (Details here: www.s4me.info/threads/tom-...) Delighted that Tom has now been honoured by the Belvedere Union. Hugely well-deserved 💪 🥳

Prof Chris Ponting, lead author of DecodeME: “It is clear that ME is not a research priority for this UK government ... We have to asked the question of them: Why is ME not a priority when all these other diseases have been and are?“ Why is that @rthonwesstreeting.bsky.social?

Prof Chris Ponting, lead author of DecodeME: “It is clear that ME is not a research priority for this UK government ... We have to asked the question of them: Why is ME not a priority when all these other diseases have been and are?“ Why is that @rthonwesstreeting.bsky.social?

Sometimes the historical dictionary offers solace through the existence of an obsolete word that is sorely needed now. One of them is ‘respair’, recorded just once, in the 15th century. It means fresh hope, and a recovery from despair.

"DecodeME is now calling on researchers worldwide to join us in accelerating ME/CFS research.” - Prof Chris Ponting (DecodeME Investigator). We encourage researchers to explore and build on our findings. Apply for access to our rich dataset now shorturl.at/F8aOM

My letter in The Times about #DecodeME and the need for the government, institutions and individuals to acknowledge their mistakes, apologise, and act to ensure that research is sharply increased and patients are given access to appropriate services: www.thetimes.com/comment/lett...

My letter in The Times about #DecodeME and the need for the government, institutions and individuals to acknowledge their mistakes, apologise, and act to ensure that research is sharply increased and patients are given access to appropriate services: www.thetimes.com/comment/lett...

This powerful poem, Art Therapy, might resonate on #SevereMEDAy. It's by my friend and published poet Veronica Ashenhurst, who grows ever more severe. #Gaslighting Read the whole poem at acropolisjournaluk.wixsite.com/acropolisjou... @tomkindlon.bsky.social @strangerandstranger.net

If you'd like to support the researchers behind #DecodeME with other projects eg #SequenceME www.clinicalresearchnewsonline.com/cln/pressrel..., here's donation link www.decodeme.org.uk/support-us/ Alternatively donate directly to Prof Ponting's #MECFS research donate.ed.ac.uk/support/ME-C... #CFS

Strange that #DecodeME was on the front page of the Guardian today and was reported in all the major UK newspapers but it hasn’t yet been mentioned on BBC News: www.theguardian.com/society/2025...

1) The DecodeME study compared DNA of ca. 15,000 ME/CFS patients and 250,000 controls and found significant differences in 8 regions of our genome. The Manhattan plot below shows the genes and chromosomes involved. Let’s unpack the results 🧵