Binita Kane @binitakane.bsky.social · 24/09/2026Thank you George. This is the absolute reality of what patients are going through - it’s great to see mainstream journalism on this. 0806
Reposted by Binita KaneGeorge 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 17925331729
Binita Kane @binitakane.bsky.social · 23/09/2026Every now and again it’s great for clinicians and researchers to meet and ‘chew the cud’. Fantastic to see Prof Chris Ponting and meet some of his incredible team in Edinburgh today. 1423
Binita Kane @binitakane.bsky.social · 21/09/2026Hi George - happy to chat, I’m still seeing patients being offered outdated advice from ME clinics sadly. 21083
Reposted by Binita KaneDavid Osborn @safedavid3.bsky.social · 16/07/2026I was delighted to be asked by COVID-ACTION to give them a talk. Initially we hadn't selected a topic for the talk, but the effrontery of a NERVTAG member (purporting that the pandemic planners had done a great job!) soon settled the subject in my mind. tinyurl.com/Pandemic-Pla... 0146
Reposted by Binita KaneKit Yates @kityates.bsky.social · 22/06/2026You Don't Know What You're M ss ng is out. It's about how the information we use to understand the world contains gaps and how those gaps are important. If you've enjoyed reading my stuff on this site, do me a favour and get yourself a copy:amazon.co.ukYou Don't Know What You're Missing: The science of what’s lost, and how to find it : Yates, Kit: Amazon.co.uk: BooksYou Don't Know What You're Missing: The science of what’s lost, and how to find it : Yates, Kit: Amazon.co.uk: Books 24615
Reposted by Binita KaneLong Covid Kids @longcovidkids.bsky.social · 17/06/2026👀 ‘You're not imagining it.' 🗓️ Wednesday 22nd July 2026 We are pleased to support this hopeful and practical online conversation hosted by Asma Yunus, with Dr @binitakane.bsky.social & Dr Sanjay Gupta, as part of #SouthAsianHeritageMonth @sahm-uk.bsky.social www.eventbrite.co.uk/e/youre-not-...eventbrite.co.ukYou're Not Imagining It — Long COVID, ME & other invisible illnessesFree online event bringing leading clinicians for a practical and hopeful conversation about Long COVID and other invisible illnesses 0116
Binita Kane @binitakane.bsky.social · 16/05/2026Agreed Carl, we need to move to a medical model where patients can access treatments. 150
Binita Kane @binitakane.bsky.social · 14/05/2026We are hopeful that the new Senedd will invest 🤞🏽 A huge thank you to Rob Messenger and the Welsh patient advocates for setting up the meeting, and the amazing Claire Jones and North Wales ME service for trailblazing. 1121
Binita Kane @binitakane.bsky.social · 14/05/2026It was a pleasure to meet with Tracey Williams at the Welsh Government offices in Cardiff to discuss the possibility of all-Wales service for ME. With her background in nursing, Tracey truly ‘gets it’ and the conversation was refreshingly honest. 24412
Reposted by Binita Kanesarah boothby @swastrosarah.bsky.social · 03/05/2026#MEAwarenessMonth 🧵 by email this morning, "On Friday 1 May our lawyers issued our second letter before claim. Our challenge is in direct response to the Government's announcement on 24 March that it would not begin to consider NHS provision for severe/very severe ME before April 2027. 1🪡7 43711
Binita Kane @binitakane.bsky.social · 29/04/2026Our new paper out today in Nature Comms, led by the amazing @profmarkfaghy.bsky.social Current status and future perspectives on the mechanistic And pathophysiological understanding of Long Covid www.nature.com/articles/s43...nature.comCurrent status and future perspectives on the mechanistic and pathophysiological understanding of long COVID - Communications MedicineFaghy et al., review the current literature on Long COVID pathophysiology, linking immune dysregulation, viral persistence, and vascular injury to enduring symptoms. They highlight evidence to guide f... 16728
Binita Kane @binitakane.bsky.social · 27/03/2026Fellow Speakers: Prof Tom Trinick, Dr William Weir and Prof Chris Ponting @cgatist.bsky.social 180
Binita Kane @binitakane.bsky.social · 27/03/2026Real change doesn’t happen without these persistent, informed, and collective patient voices. Grateful to be part of a community that is not only raising awareness, but actively shaping the future 💙 170
Binita Kane @binitakane.bsky.social · 27/03/2026It continues to challenge outdated narratives, amplifying lived experience, and push research and policy in the direction patients have long-needed. 130
Binita Kane @binitakane.bsky.social · 27/03/2026Huge thanks to Hope 4 ME and Fibro Northern Ireland - patient advocacy has been the driving force behind so much of the progress we’ve seen in the last few years. 130
Binita Kane @binitakane.bsky.social · 27/03/2026In Belfast. Looking forward to this patient-led meeting of minds to push forward change for people living with chronic complex post-viral illnesses. #longcovid #MECFS 1284
Binita Kane @binitakane.bsky.social · 17/03/2026I haven’t input I’m afraid. I’ve not looked but heard it’s the same as before but with the pharmacological treatments removed. Just so disheartening if that is the case. 120
Reposted by Binita KaneHarriet Carroll: Long Covid Scientific Consultancy @angryhacademic.bsky.social · 14/03/2026Cardiovascular adjustments to gravitational stress (1991) ntrs.nasa.gov/api/citation... Reading this review on spaceflight adaptations and this line has caught me: "Even vigorous exercise in the supine position fails to prevent orthostatic intolerance after bed rest"ntrs.nasa.gov 152
Reposted by Binita KaneHarriet Carroll: Long Covid Scientific Consultancy @angryhacademic.bsky.social · 14/03/2026(Talk is here in case you missed it: www.youtube.com/watch?v=Ar0X...)youtube.comHydration, Appetite, and Blood Sugar in POTS | #longCOVIDYouTube video by The Long Covid Clinic: What You CAN Do 113
Reposted by Binita KaneDavid Osborn @safedavid3.bsky.social · 13/03/2026CATA (Covid Airborne Transmission Alliance) has today issued this press release ahead of next Thursday's publication of the Inquiry's module 3 report: tinyurl.com/CATA-press-r...tinyurl.com 18450
Reposted by Binita KanePatient-Led Research Collaborative @patientled.bsky.social · 12/03/2026Op-ed out today in @thesicktimes.org from PLRC co-lead @leticiasaurus.bsky.social and @jencurtinmd.bsky.social on the #LongCovid Treatment Guide! “Too often, people with Long COVID hear… not much can be done for them at this point. We… believe it is a fallacy that hinders access to care”thesicktimes.orgA new aid in the doctor’s office: Introducing the Long COVID Treatment Guide - The Sick TimesToo often, people with Long COVID hear that since clinical research is still underway, not much can be done for them at this point. We at the Patient-Led Research Collaborative and RTHM Clinic reject ... 17836
Reposted by Binita Kanejencurtinmd.bsky.social @jencurtinmd.bsky.social · 11/03/2026So excited the #LongCOVID Treatment Guide is live! This has been over a year in the making working with the incredible team at @patientled.bsky.social! Thanks to everyone who reviewed & gave feedback on the guide! We really hope it helps the #IACC community! 26421
Binita Kane @binitakane.bsky.social · 11/03/2026Phenomenon work from Jen Curtin and team 👏🏽👏🏽👏🏽 33412
Reposted by Binita KaneTom Kindlon @tomkindlon.bsky.social · 10/03/2026HLTH Chat Podcast Episode 8: Treating ME and Long Covid with Dr Binita Kane @binitakane.bsky.social m.youtube.com/watch?v=pk00... Screenshot from Science for ME weekly update #LongCovid #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome 0146
Binita Kane @binitakane.bsky.social · 06/03/2026There are clear NICE guidelines but you need to find a healthcare professional who is aware of them and confident to diagnose - which is difficult if you have never been trained. So it’s a complete lottery. We need more education. Hope you are doing ok. 010
Reposted by Binita KaneAdam @abrokenbattery.bsky.social · 04/03/2026Dr @binitakane.bsky.social explains how a theory that #MECFS is caused by deconditioning and a fear of exercise permeated medicine and framed the illness as psychological. This led to the patients being neglected, gaslit, and some would say abused. Causing huge trauma for the community. 14721
Reposted by Binita KaneAdam @abrokenbattery.bsky.social · 04/03/2026Clip: Dr @binitakane.bsky.social explains how ME is an energy-limiting illness. The hallmark symptom, Post-Exertional Malaise (PEM), means even normal activities can trigger a worsening of symptoms. Some of her patients have to choose between a shower or preparing a meal that day. 24521
Binita Kane @binitakane.bsky.social · 03/03/2026I appreciate your words. What’s encouraging is that things are slowly changing. Sending you all the best. 060
Reposted by Binita KaneLaura @laurajerramp.bsky.social · 03/03/2026Dr Benita Kane’s video series ‘Long Covid,What you can do’ on YouTube is fantastic for #MECFS too. Great combination of interviews with top international scientists with ideas, tips, support for patients. #longcovid youtube.com/@lccwycd?si=... Click on the ‘live’ header for the full video series:youtube.comThe Long Covid Clinic: What You CAN DoThe Long Covid Clinic is a channel focused on what you can do if you have the condition. Presented by Dr. Binita Kane and Helen Oakleigh and with occasional guests. 0179
Binita Kane @binitakane.bsky.social · 03/03/2026Until then - alongside incredible advocates like @thereforme.bsky.social @longcovidsupport.bsky.social @longcovidkids.bsky.social and many MANY others, we’ll keep pushing for change. Thank you to everyone who supports us and to anyone to takes the time to listen 🙏🏽 3313
Binita Kane @binitakane.bsky.social · 03/03/2026My goal is to one day be obsolete. To be able to close down this clinic because there are excellent NHS services - like we have for any other severe chronic illness. The patients and carers suffer enormously, deserve better and should not have to pay for care. 1285
Binita Kane @binitakane.bsky.social · 03/03/2026In the podcast, I talk about how it happened, my road to getting independent CQC registration, as well as the broader challenges of treating Long COVID and ME. 1140
Binita Kane @binitakane.bsky.social · 03/03/2026My most severe patients are bedbound, tube-fed, have 24/7 full-time care and no regular NHS support outside of their GP (+ possibly a dietician). 1150
Binita Kane @binitakane.bsky.social · 03/03/2026The service emulates a tertiary level specialist interdisciplinary service - with one important difference - my patients are all over the country and so are my team. 1150
Binita Kane @binitakane.bsky.social · 03/03/2026The transition to the independent sector was never in my life plan - it happened organically. I am very grateful to HLTH Compliance for inviting me onto their podcast to share my journey and experiences of setting up the clinic. 1150
Binita Kane @binitakane.bsky.social · 03/03/2026Despite hundreds of thousands affected, to this day, there are no commissioned NHS services for those at the severe end of the spectrum - though patient advocates, charities and some MPs (especially @tessamunt.bsky.social @joplatt.bsky.social) are working hard to change this. 1204
Binita Kane @binitakane.bsky.social · 03/03/2026Just over a year ago, I left my 25 year NHS career to dedicate my life to a group of patients who remain largely unseen and unheard by the NHS - people with severe #LongCOVID and Myalgic Encephalomyelitis (#ME). 🧵 youtu.be/pk00btt7CVs?...youtu.beEpisode 8: "Treating ME and Long Covid with Dr. Binita Kane" | HLTH Chat PodcastYouTube video by HLTH Compliance 312346
Reposted by Binita KaneLong Covid Kids @longcovidkids.bsky.social · 28/02/2026Can you spare one minute to support children with Long Covid today? Use our template to write to your MP. longcovidkids.eaction.org.uk/awarenessday #LongCovidAwareness #ChildrensRights @lcawarenessint.bsky.social @longcovidsupport.bsky.social @longcovidphysio.bsky.social @longcovidsos.bsky.sociallongcovidkids.eaction.org.ukEmail your MP about Long Covid Awareness Day 52426
Binita Kane @binitakane.bsky.social · 27/02/2026Really well. Unfortunately they cannot mandate training for physicians (this should never have been stated in the plan). We have discussed a multi pronged approach to increase education and awareness. Watch this space! 2123
Reposted by Binita KaneTessa Munt MP 🔶 @tessamunt.bsky.social · 05/02/2026Savannah Victora-May has been in hospital for 11 months with severe ME; a dearth of specialist treatment has contributed to her situation. The Govt’s Final Delivery Plan committed to exploring a specialised service for very severe ME. *What* is happening to prevent more cases such as Savannah’s? 88136
Reposted by Binita KaneTessa Munt MP 🔶 @tessamunt.bsky.social · 26/01/2026We desperately need good data to make the case for ME to government. The Big Survey - designed with #pwME for #pwME will be a great help. If you've got ME or ME-like symptoms as part of long Covid, do consider taking part. But, remember that the Big Survey closes tomorrow, Tuesday. 👍🏾 0134
Reposted by Binita KaneLong Covid UK @longcoviduk.bsky.social · 21/01/2026Reminder! Happening today at 8pm GMT. It will be recorded if you cannot join the live session. @binitakane.bsky.social 086
Reposted by Binita KaneKaren Hargrave @karenlhargrave.bsky.social · 15/01/2026This from @nickbenton.bsky.social brings back memories of reading books in 10 min daily chunks when my ME symptoms were worse. It’s brilliant seeing Nick starting his own blog after writing a guest piece for @thereforme.bsky.social last year. A recommended read! open.substack.com/pub/theperso...open.substack.comWhen the page went quietReflections on reading before and after ME 084
Reposted by Binita KaneProf Christina Pagel @chrischirp.bsky.social · 08/01/2026It was not a super flu year and why I think government and NHS messaging was wrong and counterproductive - my latest post christinapagel.substack.com/p/it-was-not...christinapagel.substack.comIt was not a super flu yearUpdate on flu and covid in England 920471