Binita Kane

A massive thank you to ActionForME and @longcovidsupport.bsky.social for inviting me to speak at today’s joint #LongCOVID and #ME All Party Parliament Group meeting, alongside Profs @daltmann.bsky.social @cgatist.bsky.social and David Strain.

We're happy to share that we now have an MP briefing live (joint with @actionforme.bsky.social) which you can send to your MP to give them all the info they need to support Beth Dobbin in her campaign for increased ME research funding. The briefing and our template are linked below👇

Thank you so much @thereforme.bsky.social ànd @actionforme.bsky.social for producing this useful briefing so quickly - it’s very helpful to have this analysis. And Beth - thank you for promoting all this activity - we can see that you haven’t lost your sprinter’s instincts!

Understanding is important. Putting it into practice changes lives. This month marks six years since Long Covid Kids began. Our new Practical Guide helps schools support children and young people. Free to read and share. 🧡 www.longcovidkids.org/download-res... #LongCovid #ForEveryChildhood #ME

“These are some of the sickest patients I’ve ever come across in my life.” Dr @binitakane.bsky.social talking about #MECFS and the lack of research, specialists and services on yesterday’s BBC Radio 5 Live.

📻 Full interview with @binitakane.bsky.social on BBC Radio 5 Excellent discussion on ME & Beth Dobbin that looks at: 🔹why ME has been dismissed 🔹 why it's seen as psychological 🔹 the sickest patients have no NHS care. #pwME #longcovid #medsky

"There is nothing out there. There is nowhere to go. You go to the GP and there's nowhere for them to send you to. It's really at the back of the queue as far as research, knowledge, expertise, funding." The Olympic sprinter now bedbound for 22 hours a day with #ME www.bbc.co.uk/sport/athlet...

Here'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...

Every 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.

I 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...

You 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:

👀 ‘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-...

#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

Our 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...

Cardiovascular 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"

(Talk is here in case you missed it: www.youtube.com/watch?v=Ar0X...)

CATA (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...

Op-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”

So 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!

Phenomenon work from Jen Curtin and team 👏🏽👏🏽👏🏽

HLTH 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

Dr @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.

Clip: 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.

Can 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.social

Savannah 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?

We 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. 👍🏾

Reminder! Happening today at 8pm GMT. It will be recorded if you cannot join the live session. @binitakane.bsky.social

This 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...

It 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...

Today James turns 39 🎈 It’s a hard day for us both, but also a time to think about how, despite the challenges, I’m so lucky to have had this wonderful man in my life for the past 12 years. In lieu of gifts we’ve been raising money for Edinburgh University’s ME research 👨‍🔬

Hi! I've started a free Substack - The Personal ME - about myalgic encephalomyelitis (ME). My first post is about my cognitive dysfunction - what it feels like and why explaining it can be maddening: thepersonalme.substack.com/p/the-day-my... If you enjoy it, please subscribe!

FLU is in the AIR 🇬🇧 schools " We haven't done anything different. ...wash hands" 🤔 What lessons need learning from the pandemic? Give every child Every teacher Family Healthcare Workers #CleanAirIndoors #Ventilation #AirFiltration Wear a respirator youtu.be/WxEssOeEsVk?...

Brilliant article by Rebecca Thomas (the Independent): tinyurl.com/yksjxj5b and Victoria Macdonald (Channel 4 News): tinyurl.com/3dn8mwx5 They've covered the 'formalin scandal' brilliantly. #1/21 @channel4news.bsky.social @the-independent.com @vsmacdonald.bsky.social @rebeccasmt.bsky.social

The final main thing @binitakane.bsky.social and I discussed in our YouTube chat 👇 was appetite. We were running out of time so we whizzed through a couple of points, but in this latest blog, I provide some more info: Appetite: lc-sc.co.uk/bodily-syste... 🧵