Binita Kane

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

When the page went quiet Reflections on reading before and after ME

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 Update on flu and covid in England

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 👨‍🔬

The day my brain shut down: my experience of ME cognitive dysfunction Exploring the nebulous symptoms I've had for five years

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?...

BREAKING - @meassociation.org.uk awards £1.1million - its largest-ever research grant - to Prof @daltmann.bsky.social, Imperial College London, for landmark 3-year study to find shared pathways between #me/cfs and #LongCovid | 10 December 2025:
www.imperial.ac.uk/news/article...

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... 🧵

Red Leaves and Messages of Hope @ Chester Cathedral By Jo and Nick Greer

theredtreeandme.substack.com/p/red-leaves... Huge thanks to all the ME/CFS scientists & clinicians from around the world for the messages of hope given to #TheRedTreeandME for people with ME @chestercathedral.bsky.social @cgatist.bsky.social

“My NHS colleagues and I weren’t willing to let the bodies pile high in their thousands. Johnson no longer mentions them at all.”

Hard hitting and necessary on the government’s covid complacency from @drrachelclarke.com

observer.co.uk/news/...

Alison Hume MP shares an account of severe #MECFS and warns that many healthcare professionals lack understanding of severe ME — especially its hallmark symptom, post, exertional malaise PEM — and that patients are too often pushed into pathways that simply aren’t appropriate.

Tessa Munt MP warns that two preventable death reports in just over a year highlight the dangers facing people with severe #MECFS. She spoke to @BinitaKane.bsky.social, who described a 25yr old student and multiple missed opportunities to stop her decline. This is not an isolated case.

What Martin said. Independent SAGE were not cranks, not extremists, not over-reacting. #covidinquiry

1/ How does the COVID Inquiry's Module 2 report align with what we said in @independentsage.bsky.social at the time? A 🧵on Transparency, Early & Decisive Action, Scientific Advice, Integration of Social & Economic Harms, Communication and Behavioural Science, Governance, Data and Preparedness

#ThereforME #LongCovid #MECFS

A huge thanks to the patients with severe ME who gave me permission to share their stories with @tessamunt.bsky.social and @joplatt.bsky.social this morning. Listen from around 8mins for section on severe ME.
And of course thanks to @karenhargraveuk.bsky.social for making the meeting happen 🙏🏽

YouTube video by Broken Battery Westminster Hall Debate on Support for People with ME/CFS - November 2025

A massive thank you to @tessamunt.bsky.social for tabling this debate on #ME - for listening to patients & advocates and representing the community so well.
Also to @joplatt.bsky.social and every other MP who showed up and talked so compassionately about their constituents.

youtu.be/wZFEUnjWgOA?...

The third topic @binitakane.bsky.social and I discussed was episodes of low blood sugar patients often report, even though their home testing shows normal blood sugar, broken down more in this blog (as promised!):

Blood sugar regulation: lc-sc.co.uk/bodily-syste...

'London is world's best city - people claiming it's lawless hate its success' 'The fact that London has again been crowned greatest city in the world disproves everything our critics claim, and they can’t stand it', the London Mayor Sadiq Khan writes

Here’s what you won’t hear from some commentators on social media: in the year to October, London recorded 10,000 fewer violent crimes leading to injury than it did in the twelve months before I was elected.

More on the progress we’re making ⬇️ www.mirror.co.uk/news/politic...

The 2nd thing @binitakane.bsky.social & I discussed was thirst. We barely scratched the surface of this fascinating appetite, explained more in this blog:
lc-sc.co.uk/bodily-syste...

Including:
Blood volume
Prostaglandins
Acetylcholine
Mast cells
Dopamine
Glutamate & other neurotransmitters 🧵

🚨 NEXT WEDNESDAY 19 NOVEMBER

We’ve been made aware of an upcoming Westminster Hall debate, tabled by @tessamunt.bsky.social, focused on government support for people with ME.

If you have the energy - an email to your MP asking them to attend can go a long way 🙏

Template in next post👇

Harriet (one T) sorry 🤦🏽‍♀️

Thank you Harriett! This is so helpful ⬇️

USA Photo of the year

Logo of Greens Against Covid. Text: Greens Against Covid. World Ventil8 Day logo. Text: Clean air for health: Protection from pollution AND from infectious diseases. Collaborate to Ventilate. Symbols for Youtube, Instagram and X. #WorldVentilateDay #Collabor8Ventil8 worldventil8day.com #CleanAirIsAHumanRight Imprint: Promoted by Covid and Long Covid Campaign Working Group (Green Party), c/o PO Box 78066, London SE16 9GQ. Colours - apple green, fair green, vivid azure and white.

Happy World Ventil8 Day @profstevegriffin.bsky.social
@sunny-rae1.bsky.social @binitakane.bsky.social
✅ #CleanAirEverywhere
✅ #MakeHopeNormalAgain

Good to see @nickbenton.bsky.social featured. Great article.

Exulansis - The Gulf of Understanding An Ongoing Battle for Adequate Treatment and Care: The Impact of Long Covid on Families' by Marianne Lynch.

Exulansis -the moment you simply give up trying to explain the in‑between.

📖 This article gives voice to the silent struggle of families living with #LongCovid, where recognition, care and empathy often fail them.

www.longcovidadvoc.com/post/exulans...

Mayor of London Sadiq Khan with colleague stood in front of C40 cities info board.

When I was first elected, evidence showed it would take 193 years to bring London's air pollution within legal limits.

Due to our policies, we've done it in 9.

In Brazil this week, we showed that cities are giving the world reason to hope when it comes to tackling the climate emergency.