Reposted by Trish DavisNatasha Devon @natashadevon.bsky.social · 24/09/2026George will be coming on my show this weekend to discuss this very important article. 29436137
Reposted by Trish DavisAlem Matthees @alemmatthees.bsky.social · 23/09/2026For the love of the universe and the sake of millions of people with #MECFS and #LongCOVID can some funding body please fund the rest of #SequenceME / LC already?! WGS is one of the greatest crowning achievements of science and has enormous potential for pointing the compass in the right direction.actionforme.org.ukSequence ME & Long CovidSequenceME & Long Covid is a major new whole-genome sequencing study to understand ME and Long Covid. 05725
Reposted by Trish DavisGeorge 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 17925191716
Reposted by Trish DavisScience for ME (S4ME) @s4me.info · 20/09/2026Our 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. 14 - 20. 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. 078
Reposted by Trish DavisME/CFS San Diego @mecfssd.bsky.social · 02/09/2026Prime Research Project PEM Video: experts discuss what PEM is, what may cause it, & how it can be defined and explained, w/ perspectives from research, clinical & patient communities. July 2026 webinar Recording: www.youtube.com/watch?v=Ad2R...youtube.comPRIME Research Project 3rd Webinar - Post-extertional malaise (PEM)YouTube video by Action For ME 043
Reposted by Trish DavisAnil van der Zee @anilvanderzee.bsky.social · 28/08/2026So, I got royally knighted today. Woot!? Yes, I did. Adopted from Sri Lanka, knighted in the Netherlands. Who would've thought! The most important thing is that this award belongs to the whole community. Everything we do is teamwork. I'll write more after I recovered. #pwme #millionsmissing 1311023
Reposted by Trish DavisAnil van der Zee @anilvanderzee.bsky.social · 21/08/2026"Not a Patient Advocate. Not Your Silver Lining Porn. Just Desperation." anilvanderzee.com/not-an-advoc... #pwme #myalgicE #millionsmissing #severeMEanilvanderzee.comNot an Advocate. Not Your Silver Lining Porn. Just Desperation. - Anil van der ZeeI'm not a patient advocate. I'm not an activist. I'm just a patient that shares out of sheer desperation as much about my disease, or rather the whole shit show circus surrounding it, so I can hopeful... 01610
Reposted by Trish DavisScience for ME (S4ME) @s4me.info · 14/08/2026New Fact Sheet from the Science for ME (S4ME) Forum: "Management of severe and very severe ME/CFS" s4me.info/threads/fact... This is the fourth fact sheet published by the S4ME forum. I'll post links to the other three in the replies. 1/4 #MEcfs #SevereME #PwME #S4MEs4me.infoFact Sheet 4: Management of severe and very severe ME/CFSFact Sheet 4: Management of severe and very severe ME/CFS Published August 2026 Link to pdf: https://s4me.info/docs/Management of severe and very severe MECFS.pdf Discussion thread: Fact sheet #4 - M... 1159
Reposted by Trish DavisFred Rossi @darthfoo.bsky.social · 11/08/2026“I am borrowing a horizon, because mine has been four walls and a ceiling for a long time, and a person needs somewhere to look.” #LongCOVID #MECFS #Disabled #Gaming #Reading #Tools #AI darthfoo.substack.com/p/twelve-per...darthfoo.substack.comTwelve PercentA year with Breath of the Wild, and what it actually costs to play a video game 071
Reposted by Trish DavisScience for ME (S4ME) @s4me.info · 19/07/2026Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of July 13 - 19. s4me.info/threads/news... #MEcfs #PwME #LongCovid #PwLCs4me.infoNews in Brief - July 2026This thread has a Science for ME 'News in Brief' post for each week in July 2026 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news. 066
Reposted by Trish DavisScience for ME (S4ME) @s4me.info · 24/05/2026Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and other news for the week of May 18 - 24. www.s4me.info/threads/news... #MEcfs #LongCovids4me.infoNews in Brief - May 2026This thread has a Science for ME 'News in Brief' post for each week in May 2026 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news. 096
Reposted by Trish DavisAnil van der Zee @anilvanderzee.bsky.social · 01/05/2026‼️ BURIED ALIVE WITH M.E.‼️ For #MEAwarenessMonth I made a severe ME body‑bag “dance” film about death within the ME community. youtu.be/XhrAhGkrGuQ?... I also joined the online expo ME Kills by A Quiet Storm, which goes live on May 12th, 1/ #pwme #myalgicE #millionsmissingyoutu.beBuried Alive with M.E. (with subtitles) YouTube video by Anil about ME 1010666
Reposted by Trish DavisAnil van der Zee @anilvanderzee.bsky.social · 12/04/2026TRAILER: Buried Alive with M.E. I’ve spent the last months making a film for M.E. Kills, an online exhibition by A Quiet Storm. People with ME die every week. Many more are left to rot in dark rooms without care, disbelieved and dismissed. It’s a living death. #pwme #millionsmissing #severeME 1/ 59951
Reposted by Trish DavisSomething Chronic @somethingchronic.bsky.social · 25/03/2026@rthonwesstreeting.bsky.social Coroners’ prevention of future death notices should not be ignored #pwME should not starve to death or be wrongly institutionalised because no NHS specialist services exist for #severeME Successive governments have known for decades #JusticeForME #HumanRightsAbuse 094
Reposted by Trish DavisMichiel @murtoz.bsky.social · 18/02/2026@tessamunt.bsky.social @ashleydaltonmp.bsky.social this open letter calls for exactly the right thing. We must stop unnecessary deaths by developing a safe (very) severe NHS hospital protocol. Also needs a specialist ward that's suitable for people with the severe sensory issues. #SaveSavannah 0145
Reposted by Trish DavisThereForME @thereforme.bsky.social · 10/02/2026In this week's #ThereForME blog our co-founder @karenlhargrave.bsky.social writes about the challenges she and her husband James have faced accessing NHS Continuing Healthcare funding. She explains why CHC funding for very severe ME is an issue that deserves attention. 🔗 in next post 👇 32410
Reposted by Trish DavisAdam @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… 1213576
Reposted by Trish DavisTom Kindlon @tomkindlon.bsky.social · 11/01/20265-page post-exertional malaise ( #PEM) fact sheet www.s4me.info/docs/PEM_Fac... Headings: -Characteristics of PEM -Symptoms of PEM -Exertion and other PEM triggers -Effects of exertion that are not PEM -Living with PEM -Examples of PEM -Research on PEM -References #MEcfs #CFS #pwME #LongCovid 1/ 43912
Reposted by Trish DavisScience for ME (S4ME) @s4me.info · 04/01/2026Our latest News in Brief summary has headlines and links to further reading for #MECFS, #LongCovid, and related news for the week of Dec. 29 - Jan. 4. Topics: News, advocacy and articles Coming events Research news and commentary & Published research www.s4me.info/threads/news...s4me.infoNews in Brief - January 2026This thread has a Science for ME 'News in Brief' post for each week in January 2026 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news. 087
Reposted by Trish DavisScience for ME (S4ME) @s4me.info · 24/11/2025Our latest News in Brief summary has headlines and links to further reading for #MECFS, #LongCovid, and related news for the week of Nov. 17 - 23. Topics: News, advocacy and articles Coming events Research news and commentary & Published research www.s4me.info/threads/news...s4me.infoNews in Brief - November 2025This thread has a Science for ME 'News in Brief' post for each week in November 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news. 096
Reposted by Trish DavisDr Farbod @emergencybod.medsky.social · 15/11/2025I came to this country as a child refugee. No English, no certainty, no idea what my life could become. Britain gave me refuge. Not on a timer, not with conditions attached, but with a chance to grow roots. A thread 🧵 1/8 www.bbc.co.uk/news/article...bbc.co.ukUK set to limit refugees to temporary staysShabana Mahmood is expected to say the era of permanent protection for refugees is over, in major changes to the UK's asylum and immigration system. 461486675
Reposted by Trish DavisScience for ME (S4ME) @s4me.info · 09/11/2025Our latest News in Brief summary has headlines and links to further reading for #MECFS, #LongCovid, and related news for the week of Nov. 3 - 9. Topics: News, advocacy and articles Coming events Research news and commentary & Published research www.s4me.info/threads/news...s4me.infoNews in Brief - November 2025This thread has a Science for ME 'News in Brief' post for each week in November 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news. 0106
Reposted by Trish DavisNicky Proctor @nickyproctor.bsky.social · 02/11/2025From people who did LP: “Then they tell you that it’s your own fault for having ME, because you’re doing ME. I became physically exhausted and unwell, and felt guilty because you would have to be pretty stupid when you’re making yourself ill.” 052
Reposted by Trish DavisScience for ME (S4ME) @s4me.info · 26/10/2025Our latest News in Brief post has headlines and links to further reading for #MECFS and #LongCovid news, advocacy and research for the week of Oct. 20 - 26. Topics: News, advocacy and articles Coming events Research news and commentary & Published research www.s4me.info/threads/news...s4me.infoNews in Brief - October 2025This thread has a Science for ME 'News in Brief' post for each week in October 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news. 1159
Reposted by Trish DavisGeorge Monbiot @georgemonbiot.bsky.social · 08/10/2025ME/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...theguardian.comScientists develop first ‘accurate blood test’ to detect chronic fatigue syndromeResearch could offer hope for ME patients – but some experts urge caution and say more studies needed 571511633
Reposted by Trish DavisScience for ME (S4ME) @s4me.info · 14/09/2025Our latest News in Brief post has headlines and links to further reading for #MECFS and #LongCovid news, advocacy and research for the week of Sep 8-14. Topics: News, advocacy and articles Coming events Research news and commentary & Published research www.s4me.info/threads/news...s4me.infoNews in Brief - September 2025This thread has a Science for ME 'News in Brief' post for each week in September 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news. 097
Reposted by Trish DavisDecodeME @decodemestudy.bsky.social · 06/08/2025(1/2) Key genetic differences found in people with ME/CFS > Swipe to find out more. These findings reflect the lived experience of thousands of #pwME. Thanks to all our participants & supporters who made this possible! Read a summary of our results: shorturl.at/pgsjk 3220148
Reposted by Trish DavisHilda Bastian @hildabast.bsky.social · 25/07/2025My rapid response at BMJ is online now. I joined the chorus of protest about an opinion piece claiming people with severe ME/CFS can recover by "reframing their beliefs" &c. People with ME/CFS deserve so much better than that: www.bmj.com/content/389/... #MECFSbmj.comPatients with severe ME/CFS deserve better than unproven theories 158445
Reposted by Trish DavisBinita Kane @binitakane.bsky.social · 15/07/2025I did my safeguarding level 3 mandatory training this week on FII (Fabricated or induced illness - seen as a form of child abuse) and PP (perplexing presentations) i.e. symptoms that don’t make sense to paediatricians. Look at the symptoms that these ‘abusive’ parents may report. 2414659
Reposted by Trish DavisScience for ME (S4ME) @s4me.info · 15/06/2025Our latest News in Brief post has headlines and links to further reading for #MECFS, #LongCovid, and related news, advocacy and research for the week of June 9 - 15. Topics: News, advocacy and articles Coming events Research news and commentary & Published research www.s4me.info/threads/news...s4me.infoNews in Brief - June 2025This thread has a Science for ME 'News in Brief' post for each week in June 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news. 185
Reposted by Trish DavisTom Kindlon @tomkindlon.bsky.social · 13/06/2025🧵 I thought this was good (as I'd expect from @oonaghcousins.bsky.social & @thereforme.bsky.social team): "The importance of understanding rest: How my experience of rest as an athlete clashed with my experience of rest as a patient" www.thereforme.uk/p/the-import... #MEcfs #LongCovid 1/ 34617
Reposted by Trish DavisDavid Tuller @davetuller1.bsky.social · 25/05/2025The BMJ has a long history of publishing stuff promoting the "biopsychosocial" approach to ME and ME/CFS: virology.ws/2025/05/24/t...virology.wsTrial By Error: More on the BMJ Opinion Piece from the Psychobabblers | Virology BlogBy David Tuller, DrPH When it comes to ME and ME/CFS, The BMJ—formerly called The British Medical Journal but now, like the food franchise once known as Ken ... 15420
Reposted by Trish DavisCarole Bruce @cabruce.bsky.social · 18/05/2025The BMJ have published Dom Salisbury’s rapid response to Miller et al’s Opinion piece. He mentions PEM as the definitive symptom. #MEbmj.comIgnorance about post-exertional malaise and continued conflation of ME/CFS with chronic fatigue harms patients and stymies research progress 2169
Reposted by Trish DavisScience for ME (S4ME) @s4me.info · 13/05/2025The Science for ME forum has published a fact sheet on PEM, post-exertional malaise. This fact sheet may be copied and used freely by individuals and organizations. Forum version: www.s4me.info/threads/scie... PDF version: www.s4me.info/docs/PEM_Fac... #MEcfs #PwMEs4me.infoScience for ME Fact SheetsThe Science for ME committee and members are running a project to develop fact sheets about aspects of ME/CFS. These are being developed in... 12411
Reposted by Trish DavisBrian Hughes @bmhughes.bsky.social · 14/05/2025It is sad to see @bmj.com platforming quack therapies in 2025 The mind-over-matter approach to #MECFS has been debunked for years, but a cadre of psych devotees in the UK persist in peddling evidence-free miracle cures Pure and utter pseudoscience #pwME #LongCovid @georgemonbiot.bsky.social 1523373
Reposted by Trish DavisKatharine Cheston @kacheston.bsky.social · 16/05/2025The BMJ has now published my rapid response to Miller et al's Opinion piece. www.bmj.com/content/389/... 1513147
Trish Davis @ozfish.bsky.social · 08/05/2025The Science for ME international forum has published the second of our series of fact sheets. This one is about post-exertional malaise (PEM). Please share in ME/CFS and Long Covid and medical communities. #me/cfs, #longcovid www.s4me.info/docs/PEM_Fac... www.s4me.info/threads/scie...s4me.info 0115
Reposted by Trish DavisAdam @abrokenbattery.bsky.social · 05/05/2025#MECFSAwarenessMonth – Day 5 1991, the Oxford criteria for CFS were published. Vague and overly broad, they effectively identified people with unexplained fatigue. Despite being seriously flawed, they became popular in UK research and distorted understanding of ME for decades. 0135
Reposted by Trish DavisLong Covid Advocacy @longcovidadvoc.com · 01/05/2025Amazing video 🙌 It's striking how it takes lived experience for many Drs to understand how people with neglected infection associated chronic conditions are treated. That's the extent of the medical silencing 🧪 23214
Reposted by Trish DavisME/CFS Science @mecfsscience.org · 27/03/20251) In the past weeks I’ve helped to develop the first factsheet for the Science for ME forum. The goal was to summarise what is known about ME/CFS in a brief text and in easy to understand language. 13014
Reposted by Trish DavisAdam @abrokenbattery.bsky.social · 16/03/2025My 27-minute #MECFS Medical Scandal Explainer video has just hit 100,000 views on YouTube. Given that I've only got a small channel, I think this shows there is a strong interest in the scandal. Thank you to everyone who shared it! 25219
Reposted by Trish DavisScience for ME (S4ME) @s4me.info · 23/02/2025Find #MECFS, #LongCovid, and related news, advocacy and research from w/c 17th Feb in our latest News in Brief post. Headlines and links to further reading for; News, advocacy and articles Research news and commentary and Published research www.s4me.info/threads/news...s4me.infoNews in Brief - February 2025This thread has a Science for ME 'News in Brief' post for each week in February 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman.... 0157
Reposted by Trish DavisDavid Tuller @davetuller1.bsky.social · 20/02/2025A letter to Cochrane requesting withdrawal of its flawed, outdated 2019 review of exercise therapy for chronic fatigue syndrome, in the wake of the organization's abrupt Christmas decision to abandon a planned update. virology.ws/2025/02/20/t...virology.wsTrial By Error: A Letter to Cochrane's Editor-in-Chief | Virology BlogBy David Tuller, DrPH This morning, I e-mailed the following letter to Dr Karla Soares-Weiser, Cochrane’s editor-in-chief, about the decision to abandon a p ... 49841
Reposted by Trish DavisFrances Ryan @francesryan.bsky.social · 07/02/2025Me last night: Maybe this week’s column was a bit harsh on Labour. Perhaps they’ll start to see disability benefits in a more nuanced way and respect the people relying on them. Labour this morning: 33346128
Reposted by Trish DavisScience for ME (S4ME) @s4me.info · 09/02/2025Out now, our News in Brief post for w/c 3rd Feb. Covering #MECFS, #LongCovid, and related news, advocacy and research. Headlines and links to further reading for: News, advocacy and articles More on Cochrane's actions Resources and Published research www.s4me.info/threads/news...s4me.infoNews in Brief - February 2025This thread has a Science for ME 'News in Brief' post for each week in February 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman.... 0129
Trish Davis @ozfish.bsky.social · 06/02/2025The committee of @scienceforme.bsky.social international forum has submitted a set of complaints to #Cochrane. "Complaints about republishing an outdated and flawed review as if it were a new review, and the failure to withdraw it." www.s4me.info/threads/s4me...s4me.infoS4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy ReviewPETITION UPDATE Cochrane abandons the replacement review 19 Dec 2024 Cochrane cancels the review update A year after Hilda Bastian's last update... 0186
Reposted by Trish DavisDavid Tuller @davetuller1.bsky.social · 04/02/2025Here's my piece for @thesicktimes.bsky.social about Cochrane's broken promises to ME/CFS patients over its crappy 2019 exercise therapy review. thesicktimes.org/2025/02/04/r...thesicktimes.org“Really pissed off”: Cochrane receives backlash from advocates and experts after abandoning ME/CFS review - The Sick TimesFor decades, Cochrane — formerly called the Cochrane Collaboration — has been known internationally for its systematic reviews of medical treatments and interventions. Now the U.K.-based charity is un... 58839
Reposted by Trish DavisScience for ME (S4ME) @s4me.info · 26/01/2025The following #MECFS, #LongCovid, and related topics from w/c 20th Jan are covered in our latest News in Brief post. Cochrane review of Exercise Therapy for ME/CFS Other news, advocacy and articles Research news and commentary Coming events & Published research www.s4me.info/threads/news...s4me.infoNews in Brief - January 2025This thread has a Science for ME 'News in Brief' post for each week in January 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman.... 03116