Reposted by Elisabeth KlaarIt's ME(Jaime) @exceedhergrasp1.bsky.social · 24/09/2026This talk is about the association between endometriosis and mental illness. Note: 'phenotype' is whether the patient has been *diagnosed*. The diagnostic odyssey to which most people with endo are subjected means patients get dxed w/depression or anxiety regardless of symptomatic presentation. 4336
Reposted by Elisabeth KlaarTom Kindlon @tomkindlon.bsky.social · 19/09/2026"On this page you will find ongoing ME/CFS clinical trials looking for participants" All currently look like they are in the US except the Open Medicine Foundation Study ME registry which is international ammes.org/clinical-tri... #MEcfs #PwME #CFS #LongCovid 02715
Reposted by Elisabeth KlaarLucibee @lucibee.bsky.social · 30/07/2026Another issue I have found is that the modules are not easy to find on the elfh dashboard. They are only accessible if you search for them. Browser mode does not show them at all. 123
Reposted by Elisabeth KlaarLucibee @lucibee.bsky.social · 30/07/2026But more importantly, I don't think it should be up to patients or even the charities to be promoting these modules to healthcare staff. The Government promised that they would promote these modules. It is DHSC that should be urging Trusts to inform staff about them. 143
Reposted by Elisabeth KlaarLucibee @lucibee.bsky.social · 30/07/2026Thank you @meassociation.org.uk for talking about these data on their blog. meassociation.org.uk/2026/07/nhs-...meassociation.org.ukNHS England's ME/CFS e-Learning Modules FOI Results reveal lack of uptake - The ME AssociationFOI results reveal low uptake of NHS England's ME/CFS e-learning modules. Read the findings and the ME Association's comments 164
Reposted by Elisabeth KlaarProf. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 30/06/2026Children w #MECFS suffer an impossible plight - from medical gaslighting to being falsely accused of child protection issues. This has to stop. Very grateful for the amazing work done by @privilegienschreck.bsky.social, @ffhambu.bsky.social and @buechnerronja.bsky.social, and to be part of the below 0133
Reposted by Elisabeth KlaarElke Hausmann @drelke.bsky.social · 15/06/2026I'm a doctor joining the call for up-to-date scientific representation & meaningful patient engagement in Long Covid and ME. I'm proud to support the Open Letter to RCPsych, backed by 58 orgs & 1200 signatories. #HearOurVoices #RCPsychIC #LongCovid #ME 03513
Reposted by Elisabeth KlaarLong Covid Advocacy @longcovidadvoc.com · 12/06/2026🗞️ Stop Press: MON 15th - We are coordinating an outreach campaign to the Royal College of Psychiatrists Congress to ensure the community's concerns about the framing of Long Covid are heard. This is a powerful opportunity for them to #HearOurVoices Template post to C+P 👇️ 1127
Reposted by Elisabeth KlaarBettina Grande @bettinagrande.bsky.social · 30/05/2026Wie es mit Mutter und Kind weiterging? Nina Weber berichtete weiter. Leider wirkt dieser Fall rückblickend nicht wie eine Ausnahme, sondern wie ein Warnzeichen. Wenn #MECFS #PEM oder #PAIS bei Kindern unverstanden bleiben, können Schutzsysteme selbst zur Gefahr werden. #LearnAboutME 28022
Reposted by Elisabeth KlaarBettina Grande @bettinagrande.bsky.social · 30/05/2026Statt medizinischer Unterstützung Münchhausen-by-Proxy Verdacht: Das Leid und Unrecht, das Eltern und ihren an #MECFS #PEM erkrankten Kindern durch Unkenntnis, Psychologisierung und sogar Inobhutnahme widerfährt, ist ungeheuerlich. @bmg-bund.bsky.social @dorobaer.bsky.social: Aufklärung jetzt! 412054
Reposted by Elisabeth KlaarTessa Munt MP 🔶 @tessamunt.bsky.social · 12/05/2026I’m so aware that #WorldMEDay is painful for many, bringing home how tough it is to have #ME, and the seeming lack of progress. Please be reassured that many of us in Parliament do care, and are working at bringing about meaningful change. Change is inevitably slow, but I’m really encouraged. 55313
Reposted by Elisabeth KlaarLucibee @lucibee.bsky.social · 11/05/2026This is why the UK Government *urgently* needs to put together a comprehensive plan for the treatment of people with severe/very severe ME in hospital. That means specialist centres of excellence that can disseminate knowledge to *all* hospitals in the UK. #MEAwarenessWeek #SevereMErgency 3165
Elisabeth Klaar @lammasleaves.bsky.social · 25/04/2026#LongCovid protesters in France bring much-needed ACT-UP energy to the campaign for funds to be focused on biomedical research and not pseudoscience that claims #LC is psychosomatic! Bravo! youtu.be/WK0T6njZ67Q?...youtu.beAction conférence organisée par C. Lemogne et B. RanqueYouTube video by Winslow Santé Publique 030
Reposted by Elisabeth KlaarDisability News Service @johnpring.bsky.social · 22/03/2026The Department for Work and Pensions is now telling disabled people who need support through the Access to Work scheme that it could take 37 weeks to make a decision on their application, senior civil servants have told MPs. #AccessToWork #DWP www.disabilitynewsservice.com/new-access-t...disabilitynewsservice.comNew Access to Work applicants being told they could have to wait 37 weeks for decision, MPs hearThe Department for Work and Pensions (DWP) is now telling disabled people who need support through the Access to Work scheme that it could take 37 weeks to make a decision on their application, sen… 01818
Reposted by Elisabeth KlaarLucibee @lucibee.bsky.social · 11/03/2026Blog from @chronicliving123.bsky.social on the low take-up of NHS training on ME/CFS. #MEDeliveryPlan chroniclivingtherapy.com/empty-classe...chroniclivingtherapy.comEmpty Classes? NHS Training on MECFS - Chronic Living TherapyFreedom of Information Request by Lucy B shows up NHS and RCP failure to publicise and encourage update of vital MECFS training modules 12615
Reposted by Elisabeth KlaarNicky Proctor @nickyproctor.bsky.social · 04/03/2026It is heartening to know that we have an ally in this role who understands the decades of neglect faced by the #ME community. I sincerely hope you can meet with @tessamunt.bsky.social very soon and that we will see a step change in government actions on #ME and Long Covid. #ThereForME 1135
Reposted by Elisabeth KlaarElke Hausmann @drelke.bsky.social · 25/02/2026A very important article. Many people are aware that medical care for the physical symptoms of Long Covid is lacking. It is less well understood that people who have Long Covid and mental health needs are also often ill served by the therapists they approach. #LongCovid 1399
Elisabeth Klaar @lammasleaves.bsky.social · 25/02/2026@anujdawar.bsky.social "Yes, it is absolutely bonkers that your uncle’s favourite Saturday jumper has suddenly become the breakout star of 2026. But that’s exactly why it’s so satisfying." www.theguardian.com/fashion/2026...theguardian.comJess Cartner-Morley on fashion: the quarter-zip is the breakout star of 2026 – and I think I know whyIt was once reserved for office workers and Rishi Sunak, but now pop stars and supermodels can’t get enough of the preppy look 010
Reposted by Elisabeth KlaarElke Hausmann @drelke.bsky.social · 25/02/2026Because it needs saying, over and over again it seems: #LongCovid #ME 0252
Reposted by Elisabeth KlaarPhoebe @phoebsbo.bsky.social · 25/02/2026“I was at the Baftas – and while hearing the N-word was unsettling, all anger should be aimed at the BBC. By failing to remove John Davidson’s tic from the broadcast, editors let down both black and disabled people.” Jason Okundaye #BAFTA #JohnDavidson www.theguardian.com/commentisfre...theguardian.comI was at the Baftas – and while hearing the N-word was unsettling, all anger should be aimed at the BBC | Jason OkundayeBy failing to remove John Davidson’s tic from the broadcast, editors let down both black and disabled people, says Guardian assistant Opinion editor Jason Okundaye 022
Reposted by Elisabeth KlaarElke Hausmann @drelke.bsky.social · 24/02/2026Brain retraining has done nothing for this woman‘s ME/CFS. How she could come to the conclusion that brain retraining is not nonsense, I don’t even understand from that article. What does she think it has done for her relapsing and remitting condition?? #ME www.theguardian.com/society/2026... 4167
Reposted by Elisabeth KlaarAdam @abrokenbattery.bsky.social · 24/02/2026BBC Inside Health: James Gallagher speaks to Prof Chris Ponting, Prof Rosemary Boyton, and Sir Stephen Holgate about ME/CFS, Long COVID, and recent advances in research, alongside people living with ME/CFS (28 mins) youtu.be/mSga69kqUy4?...youtu.beBBC Inside Health - ME/CFS ResearchYouTube video by Broken Battery 0238
Reposted by Elisabeth KlaarElke Hausmann @drelke.bsky.social · 24/02/2026For anyone who wants to follow up on Joe Dispenza mentioned in this article, this podcast is a good place to start: podcasts.apple.com/gb/podcast/c...podcasts.apple.com98: Placebo Joe DispenzaPodcast Episode · Conspirituality · 8 April 2022 · 1h 41m 122
Reposted by Elisabeth KlaarMichiel @murtoz.bsky.social · 24/02/2026I find it appalling you would write such a piece and not even once mention that there are people currently being starved by the NHS, 5 years after Maeve died for those exact same reasons, and despite a coroners prevention of future deaths report demanding urgent action & safe hospital beds for us.gofundme.comDonate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam PearceVery Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital 0123
Reposted by Elisabeth KlaarBrian Fog @uselesspriest.bsky.social · 24/02/2026I find it fascinating how constant the flow of these articles is. It's interesting to note that they never make reference to people with severe ME or LC, such as the 21yo man in Austria who recently underwent assissted suicide due to unbearable symptoms. 3124
Reposted by Elisabeth KlaarDidier @medidier.bsky.social · 24/02/2026Want to read something good about #ME today? Read this from Brigitte's german magazine. 051
Reposted by Elisabeth KlaarJulia Métraux @juliametraux.bsky.social · 22/02/2026Many disabled and chronically ill people are demonized for not working full-time jobs, when the truth is they can be forced out due to inaccessible policies. www.theguardian.com/world/2026/f...theguardian.comDecline in remote jobs risks shutting disabled people out of work, study findsResearch project warns fall in homeworking roles could undermine efforts to reduce unemployment 7815319
Reposted by Elisabeth KlaarNuzie @nuzie.bsky.social · 16/02/2026Thank goodness for William Dalrymple 🙏🏼 @willdalrymple.bsky.social 09942
Elisabeth Klaar @lammasleaves.bsky.social · 12/02/2026Pretty sure this was an #Oatly advert I saw in the Tube in London in November 2018... As someone who breastfed two humans I found it obnoxious even then. Fine with me if they get chucked out the dairy aisle in supermarkets. 030
Reposted by Elisabeth Klaarvalebodi.bsky.social @valebodi.bsky.social · 04/02/2026#ME/CFS and Long Covid. They can then apply this knowledge to any treatment plan. For example, we know there is an energy production dysfunction in this patient group: any treatment needs to take this into account.” Natalie Hilliard @chronicliving123.bsky.social @physiosforme.bsky.social 052
Reposted by Elisabeth Klaarvalebodi.bsky.social @valebodi.bsky.social · 04/02/2026How does working with patients who have Long Covid or M.E. differ from working with other patients? “Fundamentally, the usual ‘reconditioning’ model of Physiotherapy does not work for this patient group. It is therefore imperative that Physiotherapists understand the evolving pathophysiology ofchroniclivingtherapy.comNatalie Hilliard Physiotherapist (Part 1) - Chronic Living TherapyNatalie Hilliard shares insights from physiotherapy, of particular use to therapists and counsellors. Eg understanding post-exertional malaise, challenges pacing properly, impact of emotional exertion... 163
Reposted by Elisabeth KlaarGeorge Monbiot @georgemonbiot.bsky.social · 04/02/2026Every complaint I had against Chomsky concerned the same problem: the way he excused or dismissed atrocities committed by his team: ie regimes and forces opposed to Western hegemonic power. As his friend, Epstein was given the same pass. In other words, it's not an anomaly. It's the same story. 22639156
Reposted by Elisabeth KlaarKaty B @katybrc.bsky.social · 01/02/2026@tessamunt.bsky.social @joplatt.bsky.social @georgemonbiot.bsky.social I'm sure you're all aware of this case of yet another #pwME being seriously harmed while under @england.nhs.uk care. It also makes it very clear that there are very serious problems with BACME being involved in care of #pwME 087
Reposted by Elisabeth KlaarCambridge Independent @cambridgeindy.bsky.social · 01/02/2026Greater #Cambridge is bucking the trend on house-building - with the lag between planning approval and spades in the ground much shorter than average www.cambridgeindependent.co.uk/news/greater...cambridgeindependent.co.ukGreater Cambridge bucks trend on house-building ratesLag between planning approval and construction is much lower. 011
Reposted by Elisabeth KlaarChronic Living Therapy (a directory) @chronicliving123.bsky.social · 31/01/2026Did an article on how to access it in English for anyone who might struggle to work out Google translate: chroniclivingtherapy.com/brigitte-spe... Includes links to specific articles with a synopsis so you can choose which to read.chroniclivingtherapy.com'Brigitte' Special Edition - MECFS - Chronic Living TherapyBrigitte, a mainstream magazine with a large circulation in German-speaking countries, published an excellent special edition about ME/CFS. 024
Reposted by Elisabeth KlaarTom Kindlon @tomkindlon.bsky.social · 31/01/2026Brigitte, a mainstream German women's magazine, has published a special edition about #MECFS drvjdg.clicks.mlsend.com/ty/cl/eyJ2Ij... Google translation www-brigitte-de.translate.goog/gesund/mecfs... Screenshot from @chronicliving123.bsky.social newsletter #CFS #PwME @lammasleaves.bsky.social 1268
Reposted by Elisabeth KlaarTom Kindlon @tomkindlon.bsky.social · 31/01/2026British Association for Counselling and Psychotherapy 'Letter to the Ed' chroniclivingtherapy.com/wp-content/u... Screenshot from Chronic Living Therapy @chronicliving123.bsky.social newsletter #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @lammasleaves.bsky.social 22010
Reposted by Elisabeth KlaarProf. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 26/01/2026Vielleicht sollte ich das klarer formulieren: Das #biopsychosoziale Modell ist kein wissenschaftliches Modell. Es versäumt es nicht nur, die Konzepte richtig zu definieren, sondern unterscheidet auch nicht zwischen kausalen, korrelativen und falschen Korrelationsbeziehungen. 1/4 55230
Reposted by Elisabeth KlaarDr Nicola Clague-Baker @claguenjc36.bsky.social · 17/01/2026Thank you to all #hcps with #LC and #ME who completed the survey. It is now closed. We had 170 people complete the survey and we are just finishing nearly 30 interviews. As always we are v grateful to all participants using their valuable energy to take part @physiosforme.bsky.social 063
Reposted by Elisabeth KlaarTom Kindlon @tomkindlon.bsky.social · 30/11/2025An Austrian ME/CFS patient sued against the withdrawal of her allowance. Vienna Higher Regional Court has ruled in her favour,criticizing the methods of experts who reviewed the case & dismissed the D-A-CH consensus statement on #MECFS Translation www-kleinezeitung-at.translate.goog/lebensart/ge...www-kleinezeitung-at.translate.googPatientin hat geklagt: Gericht prangert ME/CFS-Gutachter an und hebt Urteil aufEine ME/CFS-Patientin hat gegen den Entzug des Rehageldes geklagt – und vom Oberlandesgericht Wien Recht bekommen. Im OLG-Beschluss wird die Arbeitsweise von Gutachtern massiv kritisiert. 0277
Reposted by Elisabeth KlaarAdam @abrokenbattery.bsky.social · 06/11/2025‘If you’re disabled, you’re not ill.’ Sir Charlie Mayfield (author of the Keep Britain Working review) This is who’s shaping UK disability employment policy. Shocking, he doesn’t even understand the basics. I’m disabled because I’m chronically ill with #MECFS. 1811540
Reposted by Elisabeth KlaarIt's ME(Jaime) @exceedhergrasp1.bsky.social · 04/11/2025At the #ICanCME2025 conference today! Sabrina Poirier & Maeghan Taverner's intros blew me away. ~Acknowledging labor from people with lived experience ~Setting out expectations ~Moment of silence for those we've lost This is what a conference designed by people with lived experience looks like 🧪 116342
Reposted by Elisabeth KlaarAdam @abrokenbattery.bsky.social · 23/10/2025Dr 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...twitter-thread.com🧵Dr Clare Gerada has been appointed a crossbench peer in the House of Lords and is now a Baroness. She is married to psychiatrist Sir Simon Wessely, the main architect of the now-discredited psycholog...🧵Dr Clare Gerada has been appointed a crossbench peer in the House of Lords and is now a Baroness. She is married to psychiatrist Sir Simon Wessely, the main architect of the now-discredited psycholog... 147941
Reposted by Elisabeth KlaarDanilo Buonsenso @buonsenso.bsky.social · 19/10/2025“We Can’t Do This Alone”: A Doctor’s Plea for Support in Caring for Long COVID and ME/CFS Patients danilobuonsenso.substack.com/p/we-cant-do...danilobuonsenso.substack.com“We Can’t Do This Alone”: A Doctor’s Plea for Support in Caring for Long COVID and ME/CFS PatientsAs a pediatrician and infectious disease specialist, my days are full. 77328
Reposted by Elisabeth KlaarTom Kindlon @tomkindlon.bsky.social · 18/10/2025October International Research and Advocacy Roundup emerge.org.au/news/october... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid 043
Reposted by Elisabeth Klaarsarah boothby @swastrosarah.bsky.social · 18/10/2025This was submitted February 2024! www.nature.com/articles/s41...nature.comAltered effort and deconditioning are not valid explanations of myalgic encephalomyelitis/chronic fatigue syndromeNature Communications - Altered effort and deconditioning are not valid explanations of myalgic encephalomyelitis/chronic fatigue syndrome 24313
Reposted by Elisabeth KlaarTom Kindlon @tomkindlon.bsky.social · 09/10/2025Just dealing with an ME enquiry: a lot of people understandably want to know what they can do to help improve their health. But people also need to try to avoid making themselves worse. Pretty obvious for long-term patients, but can be an awkward topic to bring up. #MEcfs #PwME #CFS 0193
Reposted by Elisabeth KlaarJennie Jacques @jenniejacques1.bsky.social · 09/10/2025Thank you 🙏 @georgemonbiot.bsky.social Here’s an interview with George and @davetuller1.bsky.social to learn more…! m.youtube.com/watch?v=SpLM...m.youtube.comGeorge Monbiot David Tuller Jennie Jacques talking ME/CFS LONG COVID CANCER HIV/AIDSYouTube video by The Monster In ME 07324
Reposted by Elisabeth KlaarTom Kindlon @tomkindlon.bsky.social · 03/10/2025From the September 2025 Chronic Living @chronicliving123.bsky.social Therapy newsletter Open Letter to the British Association of Counselling & Psychotherapy (BACP) magazine by @lammasleaves.bsky.social et al chroniclivingtherapy.com/open-letter-... #MyalgicEncephalomyelitis #MEcfs #CFS #PwME 2106
Reposted by Elisabeth KlaarThe Sick Times @thesicktimes.org · 27/09/2025It can feel lonely navigating the #LongCOVID crisis. We report on this common, life-changing disease that affects over 400 million people worldwide. Sign up for our newsletter and join others who want fact-based news without COVID-19 denial, minimizing, or gaslighting. thesicktimes.org/newsletter/ 16423