Reposted by Robert Saunders (aka McMullen)Action for ME @actionforme.bsky.social · 01/10/2026Register for the 4th PRIME webinar: The Neurology of ME/CFS 🗓️ Weds 28th Oct 🕑 2-5pm GMT 📍 Online via Zoom Join leading international researchers to explore neurology in ME/CFS & why it’s become an important area of research. Register & read more 👇 www.actionforme.org.uk/register-for... 086
Reposted by Robert Saunders (aka McMullen)The Guardian @theguardian.com · 24/09/2026Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiottheguardian.comAbandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George MonbiotChanges in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot 713152
Reposted by Robert Saunders (aka McMullen)Natasha Devon @natashadevon.bsky.social · 24/09/2026George will be coming on my show this weekend to discuss this very important article. 29437138
Reposted by Robert Saunders (aka McMullen)George Monbiot @georgemonbiot.bsky.social · 24/09/2026Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...theguardian.comAbandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George MonbiotChanges in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot 17925351729
Reposted by Robert Saunders (aka McMullen)George Monbiot @georgemonbiot.bsky.social · 24/09/2026With great thanks to the hundreds of people who gave me their testimonies. If I hadn't said "stop" after a few hours, it might have been thousands. The sheer scale of this scandal is hard to get your head around. 2/2 3075893
Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 24/09/2026“Across the decades, millions of people [with ME/CFS] have been neglected, dismissed and mistreated, and still it goes on … there has seldom been a stronger case for a public inquiry.” Thanks to @georgemonbiot.bsky.social for another excellent article on MECFS: www.theguardian.com/commentisfre...theguardian.comAbandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George MonbiotChanges in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot 1134
Reposted by Robert Saunders (aka McMullen)George Monbiot @georgemonbiot.bsky.social · 21/09/2026Thanks so much everyone for a massive response. I've now had as many emails as I can cope with, so no more please - thank you. They paint a really grim and heatbreaking picture. The neglect and abuse of patients goes on and on. I hope to try to do the issue justice. #ME/CFS 28770201
Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 21/09/2026The S4ME forum has started a thread for members to share stories of their ME/CFS journeys in up to 10 sentences: s4me.info/threads/your... The WE&ME foundation will ask some contributors if they can use their stories for advocacy. This is my story. Please consider sharing yours on @s4me.info 01911
Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 17/09/2026Welcome to BkueSky @alemmatthees.bsky.social For those who don’t know, Alem is the ME/CFS patient who took QMUL to tribunal to obtain the PACE trial data and won. More here from @davetuller1.bsky.social: virology.ws/2026/01/02/t...virology.wsTrial By Error: My Unexpected E-Mail Exchange with Alem Matthees | Virology BlogBy David Tuller, DrPH In recent months, one of the most high-profile people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)—Australian Alem ... 0169
Reposted by Robert Saunders (aka McMullen)John Peters @johnthejack.bsky.social · 17/09/2026Letter from @roberthmcmullen.bsky.social in Times today 132
Reposted by Robert Saunders (aka McMullen)Tom Kindlon @tomkindlon.bsky.social · 09/09/202610 years today, after a David vs Goliath FOI legal battle that damaged Alem Mathees, White et al were forced to release data from PACETrial (that cost UK taxpayers £5M) showing graded exercise therapy & CBT didn’t lead to an increased recovery rate for CFS. Please remind the world #MEcfs #PwME #CFS 516474
Reposted by Robert Saunders (aka McMullen)ME/CFS Science @mecfsscience.org · 02/09/20261) Dr. Edzard Ernst, who often writes critically about alternative medicine and pseudoscience, has written a blog about this Lightning process trial for Long Covid. 22211
Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 30/08/2026Heartening to see that the obituary of Professor Jo Cambridge is currently the most viewed obituary in The Guardian. 050
Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 30/08/2026Working in partnership with Jonathan Edwards at UCL, Jo Cambridge’s research revolutionised understanding and treatment of rheumatoid arthritis. Like Jonathan, she later turned her attention to investigating the mechanisms of ME/CFS. Her death is a great loss.theguardian.comJo Cambridge obituaryOther lives: Professor whose research led to immunotherapies that have improved the lives of countless individuals 0166
Reposted by Robert Saunders (aka McMullen)ME/CFS Science @mecfsscience.org · 29/08/20261) New blog article: the hormone prolactin rises much higher in ME/CFS patients after taking buspirone than in controls. This is one of the most replicated findings in the field but for years this line of research was abandoned.mecfsscience.orgIncreased prolactin response to buspirone - ME/CFS ScienceMultiple studies have found an increased response of the hormone prolactin to the drug buspironeContinue readingIncreased prolactin response to buspirone 34016
Reposted by Robert Saunders (aka McMullen)Frances Ryan @francesryan.bsky.social · 03/08/2026As Rod Liddle has died, I notice this column I wrote in 2019 about his attacks on people with M.E. is on the most read again. Rebekah Brooks, of News UK, described Liddle today as “provocative”. In reality, he spread lies about very sick people for cash. www.theguardian.com/commentisfre...theguardian.comRod Liddle vilifies disabled people. I’m tired of the hate. We all should be | Frances RyanWhether it is ME patients or another target, huge swathes of the media have normalised hatred of minorities for years, says Guardian columnist Frances Ryan 691353415
Reposted by Robert Saunders (aka McMullen)Naomi Whittingham @naomiwhitt.bsky.social · 30/07/2026I realised there was a part of chronic illness that I'd never actually written about. Not the grief or the isolation. But the experience of living inside a body that feels so unpredictable and unsafe. Now I’ve written it. I’d love to know if it resonates with you.alifehidden.comThe Burden of Chronic Illness That I Rarely Talk AboutBeing ill is hard. What an obvious thing to say – and yet how often it goes unspoken. I’ve written about many aspects of life with long-term illness: from the grief of dreams shat… 37528
Reposted by Robert Saunders (aka McMullen)ME/CFS Science @mecfsscience.org · 21/07/20261) We wrote a new article on cell and tissue analysis using genetic data. For ME/CFS, the results strongly point to neurons. One of the top hits is the medium spiny neuron, located in a region deep inside the brain called the striatum.mecfsscience.orgCell and tissue enrichment in ME/CFS - ME/CFS ScienceBy matching DNA results with gene expression databases researchers can determine the tissues and cellContinue readingCell and tissue enrichment in ME/CFS 25630
Reposted by Robert Saunders (aka McMullen)Chris Ponting @cgatist.bsky.social · 01/07/2026In April @ukbiobank.ac.uk stopped all researchers from accessing their Research Analysis Platform. In May they indicated they would “provide a more specific timetable in early June”. Until access is restored @decodemestudy.bsky.social analysis is stalled. We will keep all participants informed. 13311
Reposted by Robert Saunders (aka McMullen)Action for ME @actionforme.bsky.social · 10/06/2026🧬 The recording from last month’s Sequence ME & Long Covid webinar is now available to watch on our YouTube channel 🔗 Watch the recording here: youtu.be/2PFdsYCfiJo 0147
Reposted by Robert Saunders (aka McMullen)ME/CFS Science @mecfsscience.org · 14/06/20261) Watched this presentation by Dr. Steve Gardner from PrecisionLife. Their genetic analysis suggests that ME/CFS is highly polygenic and heterogeneous. They are using their data to make drug repurposing trials more effective, for example on GLP-1 receptor agonists. 53415
Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 14/06/2026My letter in today’s Observer: “Many of us stopped using X after Musk’s intentions became clear. The time has long since passed for anyone who cares about truth, humanity and democracy to follow – particularly those who aspire to lead.” 050
Reposted by Robert Saunders (aka McMullen)David Tuller @davetuller1.bsky.social · 09/06/2026My first post about that Wired piece: virology.ws/2026/06/09/t...virology.wsTrial By Error: The Truth According to Wired (and Alan Levinovitz) | Virology BlogBy David Tuller, DrPH Much has already been written about Alan Levinovitz’ 7,600-word love poem to the potential healing powers of so-called “mind-body” int ... 35628
Reposted by Robert Saunders (aka McMullen)Jonathan Liew @jonathanliew.bsky.social · 28/05/2026we see you www.theguardian.com/commentisfre...theguardian.comIf you’re still on Elon Musk’s X, ask yourself this: why? | Jonathan LiewSome argue that quitting the platform formerly known as Twitter cedes the space to malign actors. But it’s an open sewer, beyond redemption, says Guardian columnist Jonathan Liew 33468137
Reposted by Robert Saunders (aka McMullen)ME/CFS Science @mecfsscience.org · 26/05/20261) There’s an interesting lead in the ME/CFS genetic data: the eccentric medium spiny neuron (eMSN), a cell type in the brain discovered only a couple of years ago. All based on preliminary findings, but the data looks rather interesting. 26020
Reposted by Robert Saunders (aka McMullen)Simon McGrath @simonmcg.bsky.social · 23/05/2026Powerful poem about the medical mistreatment of ME/CFS patients, published by The Healing Muse. Written by my friend Veronica Ashenhurst, who has severe ME. Read the whole poem here: (@roberthmcmullen.bsky.social) www.s4me.info/threads/publ... 172
Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 14/05/2026My letter in the Observer in response to an article by @tombaldwin66.bsky.social on rejoining the EU: observer.co.uk/opinion-and-...observer.co.ukA one-day debate could revive assisted dying billWhat is the way ahead for the assisted dying bill? (“MPs seek to revive assisted dying bill in face of Lords filibustering”, 26 April). The simple route is to await the ballot for private members b... 110
Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 13/05/2026An excellent blog by @simonmcg.bsky.social which explains what the £4.75 million that the UK government has given to Sequence ME and Long Covid will be used to do: mecfsresearchreview.me/2026/05/12/d... You can donate to the study here: www.actionforme.org.uk/research-cam...mecfsresearchreview.meDNA sequencing study to help pinpoint biology of ME gets £4.7mThe UK government has given nearly £5 million to fund full sequencing of the DNA of 6,000 people with ME using the best available technology. This will help scientists home in on what is really dri… 12413
Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 12/05/2026“People with ME and ME-like symptoms have been neglected for decades and while this funding is very much welcomed, it is nowhere near enough to bring ME research on a par with other illnesses.” Sonya Chowdhury, CEO AfME 👏 www.thetimes.com/uk/healthcar... Witbout paywall: archive.ph/Czvwcthetimes.comLandmark ME study will map patients’ DNA in mission to find cureThe government will provide £4.75 million in funding to British scientists who aim to create a test to reliably identify chronic fatigue syndrome 171
Reposted by Robert Saunders (aka McMullen)Action for ME @actionforme.bsky.social · 12/05/2026👉 Read more about the announcement on our website www.actionforme.org.uk/major-fundin...actionforme.org.ukMajor funding secured for Sequence ME & Long Covid, a DecodeMe projectWe are thrilled to announce that our landmark research study, Sequence ME & Long Covid, has received major funding (£4.75m) from the UK government, signalling a transformative... 0105
Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 04/05/2026So far I’ve raised £375 for Sequence ME and Long Covid. If anyone would like to help me reach my target of £500 I would be most appreciative: www.justgiving.com/page/robafmejustgiving.comRob’s birthday fundraiser for Sequence ME & Long CovidHelp Robert Saunders raise money to support Action for M.E. 031
Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 30/04/2026Since 2013 I’ve raised £20,000+ for ME research charities. This year I’m raising money for Sequence ME & Long Covid as I think this is our best chance of understanding the causes and mechanisms of ME/CFS, which will lead to the development of effective treatments: www.justgiving.com/page/robafmejustgiving.comRob’s birthday fundraiser for Sequence ME & Long CovidHelp Robert Saunders raise money to support Action for M.E. 2179
Reposted by Robert Saunders (aka McMullen)John Peters @johnthejack.bsky.social · 30/04/2026Letter in Times today from @jwatsononeill.bsky.social 054
Reposted by Robert Saunders (aka McMullen)ME/CFS Science @mecfsscience.org · 30/04/20261) 🇪🇺 The controversial European project on Long Covid includes a randomized trial on amygdala retraining and online CBT. In a preliminary analysis, both fared no better than usual care. 55312
Reposted by Robert Saunders (aka McMullen)Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 22/04/2026For my birthday on 3 May I’m raising money for Sequence ME & Long Covid via @actionforme.bsky.social: www.justgiving.com/page/robafme All donations gratefully received, however small or large. Thanks.justgiving.comRob’s birthday fundraiser for Sequence ME & Long CovidHelp Robert Saunders raise money to support Action for M.E. 143
Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 22/04/2026For my birthday on 3 May I’m raising money for Sequence ME & Long Covid via @actionforme.bsky.social: www.justgiving.com/page/robafme All donations gratefully received, however small or large. Thanks.justgiving.comRob’s birthday fundraiser for Sequence ME & Long CovidHelp Robert Saunders raise money to support Action for M.E. 143
Reposted by Robert Saunders (aka McMullen)Action for ME @actionforme.bsky.social · 20/04/20261/6 🚨 ME on the BBC We are delighted to have been selected for a BBC Lifeline Appeal - a unique opportunity to increase understanding of ME and share the voices of the ME community across national TV! #pwME ⬇️ 11611
Reposted by Robert Saunders (aka McMullen)David Tuller @davetuller1.bsky.social · 20/04/2026Well, it's now up to 27% of the goal, with 186 donations. So, it's moving along a bit. Thanks to all!!--https://crowdfund.berkeley.edu/project/49720 1187
Reposted by Robert Saunders (aka McMullen)Simon McGrath @simonmcg.bsky.social · 15/04/2026Blog about the recent study finding evidence across Europe for ME/CFS peaking at two different ages, a v unusual feature. The peak ages of 1about 6 and late 30s is a unique combo even among diseases with two, and could be a clue to the biology of ME/CFS. mecfsresearchreview.me/2026/04/15/m...mecfsresearchreview.meME/CFS onset had two peaks, which may be a clue to causesA new study strengthens the findings that ME/CFS is a disease with a highly unusual feature. Analysis of survey data on patients across Europe found there are two peak ages for getting ME/CFS, arou… 44519
Reposted by Robert Saunders (aka McMullen)Frances Ryan @francesryan.bsky.social · 02/04/2026“Ministers justify cutting help for people too disabled to work by arguing it will remove the “perverse incentives” for benefits, as if a 25 year old bedbound with ME just needs incentivising to get back to the office.” My col. on next week’s Universal Credit cut www.theguardian.com/commentisfre...theguardian.comNext week’s disability cuts will make people destitute – and you might not understand how bad they are until it’s too late | Frances RyanIf new claimants don’t meet strict criteria, they’ll lose half of the health element of universal credit. Don’t ignore that: in life’s lottery, that could easily be you, says Guardian columnist France... 710971
Reposted by Robert Saunders (aka McMullen)Peter Stefanovic @peterstefanovic.bsky.social · 06/04/2026“Ministers justified reducing support for people too disabled or ill to work by arguing it would remove the “perverse incentives” that discourage employment… as if a twentysomething bedbound with ME just needs “incentivising” to get back to the building site” www.theguardian.com/commentisfre...theguardian.comNext week’s disability cuts will make people destitute – and you might not understand how bad they are until it’s too late | Frances RyanIf new claimants don’t meet strict criteria, they’ll lose half of the health element of universal credit. Don’t ignore that: in life’s lottery, that could easily be you, says Guardian columnist France... 50703320
Reposted by Robert Saunders (aka McMullen)ME/CFS Science @mecfsscience.org · 21/03/20261) 🔬🦠New article: we've made a comprehensive overview of the immune system in ME/CFS, analyzing major studies of the past 40 years. A longread with separate chapters on: - viral persistence - cytokines - neuroinflammation - antibodies - immune cells such as NK, B, and T cells 19236
Reposted by Robert Saunders (aka McMullen)Simon McGrath @simonmcg.bsky.social · 21/03/2026Patients were central to the team that found ME/CFS is most likely to start in the teens and early middle age. Two age peaks is unusual for any disease and might help unravel ME's causes. academic.oup.com/ooim/advance... 1/ team credits to followacademic.oup.comIncidence age is bimodal for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, with higher severity burden for early onset diseaseAbstract. Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome (ME/CFS), is a disease of uncertain origin. Studies of Norwegian health records have sugge 65330
Reposted by Robert Saunders (aka McMullen)Adam @abrokenbattery.bsky.social · 19/01/2026My #MECFS scandal explainer video has just passed 200,000 views. Given the level of interest, I’ve written a follow-up article covering key examples I didn’t include, as well as some developments since. medium.com/@abrokenbatt...medium.comME/CFS Scandal Follow upThe ME/CFS scandal goes much deeper than my 27-minute explainer video. That was just an introduction — how for decades patients were told… 1213876
Reposted by Robert Saunders (aka McMullen)Adam @abrokenbattery.bsky.social · 05/03/2026Congratulations to @sharonhodgsonmp.bsky.social on her new role Minister for Public Health and Prevention. Sharon has been a strong supporter of people with ME/CFS and has spoken in a number of parliamentary debates. Here are some highlights from a debate in 2019. 35020
Reposted by Robert Saunders (aka McMullen)Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 26/02/2026Jonathan Edwards and other members of @scienceforme.bsky.social are drafting a document on what we want in terms of service provision for ME/CFS. Latest draft here: www.s4me.info/threads/a-th... All welcome to comment and make suggestions before the document before it is finalised.s4me.infoA thread on what people with ME/CFS need in the way of serviceI don't think trying to gather lots of signatories would be a good idea here. there are too many competing political interests. At this stage I am not sure that a signed letter is the way to go in fac... 21713