Reminder, #MEcfs researchers: all consented data from @decodemestudy.bsky.social is available to researchers, including individual-level genotypes and symptom questionnaire responses institute-genetics-cancer.ed.ac.uk/decodeme-the... Summary stats & questionnaires available: osf.io/rgqs3/files/...

Come and join us at Imperial College to work a project looking at mechanisms in Long Covid and ME/CFS We're looking for: A keen, experienced Research Nurse A gifted molecular immunologist with a strong bioinformatics background www.imperial.ac.uk/.../descript.... www.imperial.ac.uk/.../descript....

It would be really good to know when @ashleydaltonmp.bsky.social plans to meet @tessamunt.bsky.social & @joplatt.bsky.social, as promised, to discuss the Delivery Plan for #ME 🗓️ Hundreds for thousands of #pwME are still waiting.. 🛌🛌🛌🛌🛌🛌🛌🛌🛌🛌🛌🛌🛌🛌

2026. 6 years after the start of COVID. 6 years of Long Covid. Not a single bit of progress has been made. Not even one. Nothing has been learned. The medical profession has not produced a single answer, solution, or even improved anything. Still mass gaslighting and denial. Pure systemic failure.

Wishing every #pwME & #LongCovid, our allies & advocates the very best possible 2026 Thank you all so much for being here Sending 💙 to you all

The decades long neglect of #pwME is a great injustice and we are all poorer for it. I’m proud to be one of the 72 LibDem MPs who have fought to address this. And I know that I’m not alone in committing to continuing the fight to see real change in 2026.

December 23rd. Thank you for being #ThereForME, Jenny Wilson! Jenny is a long-standing advocate for people with ME and plays a pivotal role organising Dr Weir’s ME clinic. Nominated by Phoebe. ✨

Is the government going to sit and watch while the #PalestineAction hunger strikers die? Is most of the media going to carry on ignoring them? Just how callous has the Establishment become? www.theguardian.com/uk-news/2025...

Thinking of all the #pwME who are alone over Christmas & New Year, who wont be able to see family & friends I'm so very sorry Please know that you aren't forgotten, some of us will still be here online & we can get through this time together, as we always do Sending love🌟💙🌟

The story of Farage and Putin, told by British-Ukrainian soldier Shaun Pinner on a destroyed apartment block in Kyiv.

🧵PUBLIC HEALTH SHOULD NOT BE A CULTURE WAR 😷 It’s bizarre watching politicians, like Kemi Badenoch perform trauma around masks while millions live with the reality of not masking; death, disability, ME, Long Covid. The Guardian are asking for opinions on masking 🖇️👇 /1

There is one overriding political problem, from which all others follow. Until it is addressed, every policy advanced by governments is window dressing. www.theguardian.com/inequality/2...

My reflections after today’s APPG ME meeting…. ‘As we look to 2026, it’s clear that there’s plenty that needs MPs’ engagement. Across the ME community there’s so much shared lived experience and analysis to inform the work that we do. So, let’s get on with it! Let’s all work together next year!

December 17th. Thank you for being #ThereForME, @georgemonbiot.bsky.social! George is a well-known journalist who has focused on uncovering the reality of the “greatest medical scandal of the 21st Century”. Nominated by Carole B @cabruce.bsky.social#ThereForME ✨

Another very deserving entry in our advent calendar! Thanks @georgemonbiot.bsky.social for everything you’ve done to bring the issue to light and uncover the #GreatestMedicalScandal 🙏

So excited to share our new article on energy limiting conditions (ELC) and energy impairment in @ijdsj.bsky.social with Anna Ruddock and Ana Be. Open access www.scienceopen.com/hosted-docum... It discusses the emancipatory research process that gave rise to these terms >>

Or maybe diagnosis is at last catching up with the crises so many have been enduring, which have for so long been minimised, dismissed or ignored. share.google/1aKjHRJ596x6...

"These results confirm that #ME is a deeply polygenic & biologically heterogeneous condition with at least 4 major disease mechanisms implicated by genetic signals Neurological dysregulation🧠 Inflammation🔥 Cellular stress response⚠️ Calcium signalling🚥" #pwME precisionlife.com/news-and-eve...

New myalgic encephalomyelitis (ME, also known as ME/CFS) genetics study reveals 250+ core genes, shared mechanisms with long COVID, and dozens of drug repurposing opportunities. This would not have been possible without the thousands of people with ME who contributed their data. Thank you.

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...

"These results confirm that #ME is a deeply polygenic & biologically heterogeneous condition with at least 4 major disease mechanisms implicated by genetic signals Neurological dysregulation🧠 Inflammation🔥 Cellular stress response⚠️ Calcium signalling🚥" #pwME precisionlife.com/news-and-eve...

Utterly heartbreaking to hear that 20yr old #pwME Ella Copley has died Deepest condolences to her incredible Mother Jo who couldnt have fought harder for her @tessamunt.bsky.social @joplatt.bsky.social @ashleydaltonmp.bsky.social unless measures are taken urgently this will continue to happen 2 pwME

Sovereignty? Democracy? Sorry, but we can't afford those anymore. We'll be sued if we try to defend them. This week's column is about a massive but scarcely-covered scandal. www.theguardian.com/commentisfre...

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

This accidentally turned into a short thread. Bit of a rage-thread I'm afraid. Please read to the end if you can. Thanks

When was the last time anyone at the BBC had to resign for misrepresenting a leftwinger?

Some info on #SequenceME, an exciting research project that wishes to use in a different way the samples collected for DecodeME People can financially support such research here: www.actionforme.org.uk/research-cam... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Dr Clare Gerada has been appointed a crossbench peer in the House of Lords and is now a baroness — I’ve put together a short thread about her involvement in #MECFS. twitter-thread.com/t/1981309222...

The Spectator and others have chosen (deliberately I suspect) to interpret this article as a desire to stop a future Reform UK government from legislating. My purpose is to stop *any* government crushing our fundamental rights. It’s just more urgent now. 🧵 www.theguardian.com/commentisfre...

How can citizens and journalists hold back authoritarianism, far-right populism and hate? Join our live event with - George Monbiot - Nafeez Ahmed - Yasmin Alibhai-Brown - Nick Lowles Finding hope, protecting democracy. 7 pm, 4 November. Book now: bit.ly/BylinesHope

We've signed. It's long past time when N95s should be the norm not the exception. Patients & staff deserve to be protected & safe.

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.

Extremely grateful to @georgemonbiot.bsky.social for remaining such a strong & committed ally for #pwME & for being fearless in naming those who are responsible for the Greatest Medical Scandal of the Century & destroying the lives of hundred of thousands of #pwME

ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long. There's a huge BUT coming ...🧵 www.theguardian.com/society/2025...

Just as we are beginning to understand the biochemical basis of this horrendous condition, the government appoints the man perhaps most responsible for the mischaracterisation of ME/CFS – Simon Wesseley - to its *overdiagnosis* commission. www.benefitsandwork.co.uk/news/controv...

Early days for this test- interesting results and could be exciting but on a small group size and without other inflammatory conditions I would be cautious about saying it’s a test for ME yet

Dr. Jane Goodall filmed an interview with Netflix in March 2025 that she understood would only be released after her death.

🙏Thank you to Chronic Living Therapy for writing this important open letter to BACP about their article about gaslighting that included controversial: 👉 mind-body therapies 👉 trauma based theory 👉 neuroplasticity LCA have co-signed 📃👇 chroniclivingtherapy.com/open-letter-...

🧪Sharing this important paper for hEDS, as many people with #LongCovid & #ME are hypermobile. 📐EDS is often part of a trifecta with MCAS & POTS - also common in LC. The immune dysfunction shown in this groundbreaking paper could show a way forward 🤞 academic.oup.com/immunohorizo...

We have an exciting new development with a twist! 🥨 For all the details see our article 👇 #longcovid #pwME #chronicillness open.substack.com/pub/longcovi...

🌟 10% off ALL items ALL weekend! Just use code: TENOFF All profits to research 🛍️ longcovidadvoc.shop

COFFI & Garner on @decodemestudy.bsky.social More nonsense which is deliberately misleading. Undermining landmark biomedical research harms #pwME and misleads policy makers.

Health Rising: 'Gut Reactions: BioMapAI Points to Multiple Dysregulated Systems in ME/CFS' 'The study was funded by a series of NIH grants...the microbiome in ME/CFS patients appeared to have turned immune cells to attack the gut lining' www.healthrising.org/blog/2025/09...

Had a txt from a contributor asking how I dealt with seeing so much suffer & it's true that sometimes I was v shaken - drove off with camerbag in the gutter once - but mainly I was angry. What other disease affects 400,000 but is virtually invisible? #pwme #mecfs #millionsmissing #invisibleillness

BenefitsPRO: 'Long COVID Disability Rates Among Are Highest Among Working-Age Americans" 'New research paper backed by the Bill & Melinda Gates Foundation found Long COVID disability rates are highest among working-age Americans (20-54)' www.benefitspro.com/2025/08/27/l...

Can science crack the mystery of ME? – podcast

Our genetics results webinar recording is now available! Thank you to the 2500+ people who joined us live last week. For those who want to watch back, or who couldn’t attend you can find it on our new website, here: shorturl.at/Uh8xb

BBC: 'Is the DNA of people with ME different?' 'We meet the scientist behind the research – Professor Chris Ponting – and Laura Boyles who has been living with the condition for 15 years.' www.bbc.com/audio/play/p...

Seeking a Project Manager for the PRIME project: "Building Infrastructure for Patients, Researchers and Industry for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Closing date for applications is 15 September 2025. #pwME #MEcfs elxw.fa.em3.oraclecloud.com/hcmUI/Candid...

A new study identifies a protein called SMPDL3B as a possible key factor in Myalgic Encephalomyelitis (ME/CFS). It could explain immune problems, symptom severity, and even point to new treatments. Here’s a full breakdown - our preliminary RNA data supports this finding: 🧵