Reposted by @gallusa.bsky.socialPaul Swann (he/him) @pauldjswann.bsky.social · 11/10/2026This is a terrible illness at any age, as I have myself experienced, but to be suffering with it at the age of 9 must be devastating. 062
Reposted by @gallusa.bsky.socialAlem Matthees @alemmatthees.bsky.social · 11/10/2026(1/16) Some professionals might have harped on about psychological factors playing a major role in 'consumption' or tuberculosis, but the Wikipedia articles on TB do not mention psychological factors, presumably because the evidence is too poor or irrelevant to even mention. But ...en.wikipedia.orgRisk factors for tuberculosis - Wikipedia 131
Reposted by @gallusa.bsky.socialAdam Bienkov @adambienkov.bsky.social · 07/10/2026From the new Private Eye 572734988
Reposted by @gallusa.bsky.socialAdam @abrokenbattery.bsky.social · 07/10/2026“You’re fighting the illness, but then you’re fighting every health professional.” Hannah was struggling to digest food and losing weight, but healthcare professionals thought she had an eating disorder. 8 years later, this is still happening to people with severe #MECFS. 37635
Reposted by @gallusa.bsky.socialAlem Matthees @alemmatthees.bsky.social · 07/10/2026Scary facts in #DecodeME presentation (Ponting): Stigmatised illness. Symptoms not always believed. 75% of people with #ME/CFS say they have little or no access to healthcare. One in four patients are housebound or bedbound. Across Europe, it takes nearly seven years on average to get a diagnosis.youtube.comDecoding ME: ME/CFS genetics and biomarker studies with Professor Chris Ponting, 24 September, 2026YouTube video by ME Support 13113
Reposted by @gallusa.bsky.socialRichard Vallée @richardvallee.bsky.social · 06/10/2026So-called "evidence-based medicine" in a nutshell: doesn't work, recommend it anyway. They don't care. No wonder zero progress occurs in illnesses where this failing approach dominates. If this were a commercial product it would be banned. There are no adequate checks & balances in health care. 13214
Reposted by @gallusa.bsky.socialMorgan Carter @morgancarterphd.bsky.social · 25/06/2025It's not just #NIH. It's not just #NSF. It's not just #NASA. The whole scientific community has to make clear that all science across fed agencies is being destroyed in the US. We can't just ask for our particular piece of the pie. The whole pie is being thrown out - saving your bit won't work. 161086410
Reposted by @gallusa.bsky.socialGlasgow West End Today @glasgowwestend.bsky.social · 07/10/2026Scotland’s first museum dedicated to the art and history of stained glass is to open within the former Lansdowne Church, celebrating the pioneering work of artist Alf Webster. #Kelvinbridge #Glasgow www.glasgowwestendtoday.scot/news/scotlan...glasgowwestendtoday.scotScotland’s first stained glass museum to open in West EndFormer Lansdowne Church made accessible for close-up window tours 14213
Reposted by @gallusa.bsky.socialAlem Matthees @alemmatthees.bsky.social · 07/10/2026The #PACEtrial recovery song by the late Graham McPhee uploaded to Youtube around 2014, which along with his more serious videos on the same channel, was used to argue that he was part of an organised campaign of harassment when he submitted a FOIA request for the fitness data from the PACE trial.youtube.com6: ME Recovery SongYouTube video by MEAnalysis 33512
Reposted by @gallusa.bsky.socialMartin Grimshaw Has Long Covid @thrivingplanet.bsky.social · 07/10/2026In case anyone is reading the comments below Alem's post, I'm adding in @lucibee.bsky.social's excellent thread that goes deeper into PACE trial 'creative accounting' controversies. bsky.app/profile/luci... 031
Reposted by @gallusa.bsky.socialKasey Gifford @kaseygifford.bsky.social · 07/10/2026To put this in perspective chestnut trees used to be dominant species in the United States. Billions of trees were killed by fungal blight and now fully grown America chestnuts are functionally extinct. There is no getting them back. Ever. All for a data center. www.gadgetreview.com/one-of-ameri...gadgetreview.comOne of America’s Last Chestnut Groves Is About to Be Destroyed for a Data CenterA rare 200-tree American chestnut grove in West Virginia may be cleared for data-center development, but the project denies the site is on its land. 8537362230
Reposted by @gallusa.bsky.socialAnil van der Zee @anilvanderzee.bsky.social · 28/09/2026Almost nine out of ten people with #LongCovid do not fully recover from their symptoms. They have to learn to live with them. This is shown in a study by researchers from Frisius MC and the UMCG in Groningen. For the study, 1,200 people were followed over the past three years. #PAIS #pwme 33516
Reposted by @gallusa.bsky.socialMother Jones @motherjones.com · 02/10/2026The police said she lied about being raped. Then she hit record.motherjones.comPolice didn’t believe a 12-year-old who said she'd been raped. Then she hit record.“If I didn’t find the evidence for them, I wasn’t too sure they would find it.” 17528188
Reposted by @gallusa.bsky.socialAnonymous @youranoncentral.bsky.social · 02/10/2026Renee Good’s family is suing ICE agent Jonathan Ross and senior Trump officials, it states that her killing was the product of Operation Metro Surge. Ross fired three shots at Renee; nine months later, he is uncharged and back at work.yacnews.comRenee Good's family sues ICE agent Jonathan Ross, Stephen Miller and Kristi Noem under the 1871 Klan ActRenee Good's family sued ICE agent Jonathan Ross, Stephen Miller, Kristi Noem and Tom Homan on 1 October, over her killing in Minneapolis advanced a conspiracy against Somali and Hispanic Minnesotans.... 17855213
Reposted by @gallusa.bsky.socialChristopher Webb @cwebbonline.com · 01/10/2026Fellas, we have to talk to our sons while they’re still young. This foundation👇🏽 is the way… 545125093635
Reposted by @gallusa.bsky.socialBilly Hanlon @bhanlon15.bsky.social · 30/09/2026LBC: 'Chronic illness cases surge post-covid, leaving young patients searching for answers' 'Diagnoses of a chronic condition..have risen five-fold since the COVID-19 pandemic began, according to experts...Postural Orthostatic Tachycardia Syndrome (POTS)...' www.lbc.co.uk/article/chro...lbc.co.ukChronic illness cases surge post-covid, leaving young patients searching for answers | LBCExperts are reporting a five-fold surge in diagnoses of a rare chronic condition since the COVID-19 pandemic began 01712
Reposted by @gallusa.bsky.socialAlem Matthees @alemmatthees.bsky.social · 02/10/2026(1/3) @georgemonbiot.bsky.social is far more deserving of winning a prize for his journalism on the #MECFS scandal than whatever award was given to another journalist for literally just reporting a curated narrative handed to him by the Science Media Centre (UK) as part of their organised campaign.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 14111
Reposted by @gallusa.bsky.socialDr Ben King 🌍 @benking01.bsky.social · 02/10/2026Many children have #LongCovid too. @longcovidkids.bsky.social does a great job raising awareness of this growing problem. youtu.be/e0U7K54RiSg?...youtu.beLong Covid & Me | Understanding Long Covid In Children And Young PeopleYouTube video by Long Covid Kids 02715
Reposted by @gallusa.bsky.socialRichard Vallée @richardvallee.bsky.social · 26/09/2026There is really an immense failure at the top of the health care industry. No strategic thinking. Essentially wasting billions in funds to sacrifice tens of millions of lives and the net result is trillions in resulting losses and moral degeneracy. It was always cheaper to work at solving it. 1287
Reposted by @gallusa.bsky.socialFrances Ryan @francesryan.bsky.social · 30/09/2026Two more of your journalism Qs answered in this week’s newsletter. Among the thorny issues tackled: do newspapers actually want pitches about disability? And why “I’M NOT THE GUARDIAN’S DISABILITY COLUMNIST” will be etched on my gravestone. Read for free: frances336.substack.com/p/what-publi...frances336.substack.comWhat publications are open to disability pitches?And a round-up of the best internships and positive action schemes. 0192
Reposted by @gallusa.bsky.socialRichard Vallée @richardvallee.bsky.social · 30/09/2026The enshittification of academia in a nutshell: an open label trial with subjective assessment of the very model of care that has been failing the whole time, which they obviously know but pretend not to, is presented as double-blinded when it's not even single-blinded. 172
Reposted by @gallusa.bsky.socialAlem Matthees @alemmatthees.bsky.social · 30/09/2026Those with #MECFS who do *not* "look" fine are often treated like garbage too, because more ill often means more to blame. Many doctors who believe ME/CFS exists only accept a certain degree of disability, beyond that is then assumed must be due to personal issues rather than the illness itself. 26320
Reposted by @gallusa.bsky.socialHuffPost @huffpost.com · 01/10/2026“Elon Musk is now in charge of the future of warfare. That’s a massive, massive, massive concern,” one commenter wrote on X.huffpost.com'Should Terrify Us All': Critics Malign Elon Musk's Return To Trump Administration“Elon Musk is now in charge of the future of warfare. That’s a massive, massive, massive concern,” one commenter wrote on X. 42244113
Reposted by @gallusa.bsky.socialChris Ponting @cgatist.bsky.social · 29/09/2026Dr Katharine Cheston on the @actionforme.bsky.social 2025 Big Survey Results. 5,424 people, 85.1% female; 18.4% v/severe. She is "shocked and appalled" by the data: by people's experience living with #MEcfs. Headline results will be released later in 2026. #pwME #PRIME26 1202
Reposted by @gallusa.bsky.socialLong Covid Advocacy @longcovidadvoc.com · 26/09/2026📻 Superb @georgemonbiot.bsky.social Interview on LBC with Natasha Devon. "A long & vicious history in this country of dismissing predominantly female diseases & calling them hysterical." 🔥 Thank you George & Natasha 🙏 16832
Reposted by @gallusa.bsky.socialScience for ME (S4ME) @s4me.info · 27/09/2026Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of Sept. 21 - 27. s4me.info/threads/news... #MEcfs #PwME #LongCovid #PwLCs4me.infoNews in Brief - September 2026This thread has a Science for ME 'News in Brief' post for each week in September 2026 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news. 0114
Reposted by @gallusa.bsky.socialIsabellettriste @minxmarple.bsky.social · 25/09/2026This is a really important article to read especially if you only have a vague awareness of ME/CFS. It is a disease and people DIE from it, it’s *not* in anyone’s head. It’s not just feeling a bit tired for a while. Please read, please challenge the misinformation that abounds. 0183
Reposted by @gallusa.bsky.social🌬Breeze @cool-summer-breeze.bsky.social · 24/09/2026This is the Stolen Neighbors Quilt. Each of the 11,000 squares represents a person taken by ICE in Minnesota. 124123805269
Reposted by @gallusa.bsky.socialLong Covid Kids @longcovidkids.bsky.social · 25/09/2026“Look beyond absence. See the child living with Long Covid.” We’re really pleased to share that Long Covid Kids & Friends is featured by the National Attendance Portal. longcovidfeature.netlify.app #LongCovidKids #LongCovid #SchoolAttendance #InclusiveEducation #ChildHealth #MedicalNeeds 12310
Reposted by @gallusa.bsky.socialNatasha Devon @natashadevon.bsky.social · 24/09/2026George will be coming on my show this weekend to discuss this very important article. 29438138
Reposted by @gallusa.bsky.socialLeon Simons @leonsimons.com · 06/09/2026If this data was about the cash flow of a major economy, it would be covered by media everywhere. But as it 'only' shows global heat flow, it won't be covered anywhere.. 410466
Reposted by @gallusa.bsky.socialLucibee @lucibee.bsky.social · 22/09/2026NICE guidance NG206 is actually quite explicit. It says: "DO NOT offer people with ME/CFS ... any therapy based on physical activity or exercise as a cure for ME/CFS; ... or that uses fixed incremental [small, ie 10%] increases in physical activity or exercise, eg, graded exercise therapy" 🤦♀️ 23516
Reposted by @gallusa.bsky.socialLucibee @lucibee.bsky.social · 22/09/2026Update (Sept 22nd) from Team Karen Gordon. 3 years on Karen STILL fears for her life due to NHS failings. www.change.org/p/save-karen...change.orgKaren update: 3 years on Karen STILL fears for her life due to NHS failings.Photo: 28th of April 2026 - Karen in hospital with TPN Hello Everyone Karen has now been in Conquest hospital in East Sussex for 2 years and 9 months. On the 15th of September it was 3 years since we started this petition. When we started the petition, Karen was at home suffering from malnutrition and dehydration, very thin and becoming thinner. This was because East Sussex Healthcare NHS Trust (… 032
Reposted by @gallusa.bsky.socialDiscussingFilm @discussingfilm.net · 08/09/2026Trey Parker & Matt Stone announce that ‘SOUTH PARK’ will be renamed to ‘SOUTH AMERICA’. “Inspired by the bravery & patriotism of Apple & Google, we are changing the name of South Park to SOUTH AMERICA. We especially want to thank our parent company Paramount -- a Skydance Capitulation.” 613721916
Reposted by @gallusa.bsky.socialTom 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 @gallusa.bsky.socialAction for ME @actionforme.bsky.social · 07/08/2026Ahead of #SevereMEDay, we are launching the Severe ME Inquiry Report, exposing systemic failings in care, support and education for people with severe and very severe ME. Read today: www.actionforme.org.uk/the-more-ill... #MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis #SevereME #VerySevereME 44225
Reposted by @gallusa.bsky.socialDezeen @dezeen.com · 07/08/2026Dress made of living mycelium can renew and repair itself: www.dezeen.com/2026/08/05/dress-liv… 041
Reposted by @gallusa.bsky.socialME/CFS Science @mecfsscience.org · 31/07/2026⏱️REMINDER: This ME/CFS research call is currently open to applications. It has a budget of € 120,000-180,000 per project, provided by the WE&ME Foundation. The first stage only requires a short proposals (ca. 4 pages). The deadline is 25 August. 0188
Reposted by @gallusa.bsky.socialLong Covid Kids @longcovidkids.bsky.social · 31/07/2026🧡 Keep an eye out between 5 and 6pm this evening! Some of our members and our Chair of Trustees will be featured on Channel 5 News. We're advised this is when the report is expected to air. If you can, please help us spread the word by liking, commenting on posts. 🙏 for your support. 1116
Reposted by @gallusa.bsky.socialLong Covid Kids @longcovidkids.bsky.social · 25/07/2026🌟 Jana has started her triathlon 🌟 She would love to hit her target 🎯. www.justgiving.com/page/jana-sp... #LondonT100 #T100Triathlon #T100 #SwimBikeRun #LongCovidKids 086
Reposted by @gallusa.bsky.socialLong Covid Kids @longcovidkids.bsky.social · 25/07/2026She smashed it! Congratulations Jana 🙌 🥇 There is still time to donate and help Jana hit her target. 🎯 Shes so close. www.justgiving.com/page/jana-sp... #LondonT100 044
Reposted by @gallusa.bsky.socialFrances Ryan @francesryan.bsky.social · 19/07/2026I reviewed Jesy Nelson’s new documentary on her twins being diagnosed with spinal muscular atrophy and her campaign for lifesaving screening on the NHS. A really moving and important watch, not just for Little Mix stans. www.theguardian.com/tv-and-radio...theguardian.comJesy Nelson: Life Changing review – you just want to reach through the screen and hug the Little Mix starWhat begins as another celebrity lifestyle documentary shifts completely when the former Little Mix star faces a devastating diagnosis for her newborn twin daughters. Every scene is affecting 0347
Reposted by @gallusa.bsky.socialPeter Walker @peterwalker99.bsky.social · 15/06/2026One detail in this fascinating BBC investigation into the Russia-instigated attack on Keir Starmer's home is the way it shows, in passing but very clearly, that Tommy Robinson is to all intents and purposes a Russian asset. www.bbc.co.uk/news/article...bbc.co.ukRussia was behind arson attacks targeting PM, BBC revealsEvidence shows Russians directing the plot and stoking tensions with fake far-right and Muslim groups. 9524851074
Reposted by @gallusa.bsky.socialFrances Ryan @francesryan.bsky.social · 15/06/2026Hundreds of thousands of disabled people with lifelong conditions are being put through “pointless” benefit reassessments, contrary to official guidelines. This includes people with learning disabilities and limb amputations. My exclusive: www.theguardian.com/politics/202...theguardian.comDisabled people with lifelong conditions facing ‘unnecessary’ Pip reassessments‘Pointless’ reviews are wasting public money and ‘significantly harming’ the mental health of claimants, charity says 9220120
Reposted by @gallusa.bsky.socialwamesmecfs.bsky.social @wamesmecfs.bsky.social · 10/06/2026Watch the 3rd Blue Sunday Online Concert for ME which took place in May. It is free to watch but donations will be welcome for research into ME at Edinburgh Uni, led by Prof Chris Ponting. You can also see the concerts from previous years. tinyurl.com/mnn55737 042
Reposted by @gallusa.bsky.socialME Association @meassociation.org.uk · 02/06/20261/2: ME Association provides information for BBC Morning Live interview with Dr Ranj on ME/CFS Watch the interview on the blog, with thanks to Adam (aka abrokenbattery.bsky.social) for recording: meassociation.org.uk/cjm9 #MECFS #pwME #MyalgicE #BBC #MyalgicEncephalomyelitismeassociation.org.ukME Association provides information for BBC Morning Live interview with Dr Ranj on ME/CFS - The ME AssociationOn June 2nd 2026, BBC Morning Live featured an interview […] 124
Reposted by @gallusa.bsky.socialME Association @meassociation.org.uk · 01/06/2026** Trigger Warning - Upsetting Content ** The Gordon family has provided an update on Karen's condition and emails from East Sussex Healthcare NHS Trusts’ solicitors. Karen has been in Conquest Hospital for 2 years and 5 months. Read the update: meassociation.org.uk/w5zl #SevereMEmeassociation.org.ukGordon family issue an update on Karen health and emails from NHS ESHT solicitors - The ME AssociationThe Gordon family has provided an update on Karen's condition […] 055
Reposted by @gallusa.bsky.socialFred Rossi @darthfoo.bsky.social · 05/06/2026They call us obstacles to progress. I’m enrolled in the research. My response to WIRED’s “The Painful Truth About Long Covid.” darthfoo.substack.com/p/the-patien... #LongCOVID #MECFS #Wired #PEM #CBT #GETdarthfoo.substack.comThe Patient Who Isn’t Supposed to ExistI taught Cognitive Behavioral Therapy (CBT) before Long COVID made me a patient. WIRED got the story exactly backward. 28933
Reposted by @gallusa.bsky.socialDavid 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 @gallusa.bsky.socialAction for ME @actionforme.bsky.social · 04/06/2026Expert speakers include Maree Candish (Science for ME), Professor Mark Faghy (University of Loughborough), Marjon Wormgoor (independent researcher), Professor Todd Davenport (University of the Pacific) and Professor Maureen Hanson (Cornell University). Register here 👇 us02web.zoom.us/webinar/regi...us02web.zoom.usWelcome! You are invited to join a webinar: PRIME Webinar 3 - Post-Exertional Malaise (PEM). After registering, you will receive a confirmation email about joining the webinar.Welcome! You are invited to join a webinar: PRIME Webinar 3 - Post-Exertional Malaise (PEM). After registering, you will receive a confirmation email about joining the webinar. 064
