Something Chronic

254 245 nok out of 500 000 nok collected in a go fund me. That’s 25.000$.

The Norwegian GoFundMe for the trial. Look at what our community can do together when we collectively fight for our rights.

Every trial brings us closer to a fairer society for ME patients.

4 weeks ish until we know the verdict.

Binita KaneBinita Kane • 1stVerified • 1st Consultant Respiratory Physician | Special interest in Long COVID and ME | Founder of The Long COVID Clinic | Co-Founder of South Asian Heritage Month | Diversity Power list 2024/25 | Member of Independent SAGEConsultant Respiratory Physician | Special interest in Long COVID and ME | Founder of The Long COVID Clinic | Co-Founder of South Asian Heritage Month | Diversity Power list 2024/25 | Member of Independent SAGE 2h • 2 hours ago • Visible to anyone on or off LinkedIn Just 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 Long COVID and Myalgic Encephalomyelitis (ME). Despite 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 are working hard to change this. The 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, which emulates a tertiary level specialist interdisciplinary service - with one important difference - my patients are all over the country and so are my team. My 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). Here 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. Long Covid Kids Long Covid Support Karen Hargrave Action for ME Solve ME/CFS Initiative ME Association ME Research UK https://lnkd.in/esKihrD6 Episode 8: "Treating ME and Long Covid with Dr. Binita Kane" | HLTH Chat Podcast

I haven't watched this myself so far but have been generally impressed with media interviews Dr. Binita Kane @binitakane.bsky.social has done

www.youtube.com/watch?v=pk00...

#LongCovid #MEcfs

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?

Are we seeing a renewed attempt to erase #ME from the all NHS systems? Has a secret decree gone out? I’m seeing more and more reports from pwME about abuse in hospitals and from specialists. The feeble DHSC plan, the disregard of NICE guidelines, endless FND diagnoses from neuros. It’s all downhill.

The mass suffering created and amplified by psychosomatic ideology is absolutely criminal.

None of this has to happen, it's all a choice. No one is responsible or accountable for any of this filth.

And all for complete bullshit fantasies.

You can list Keir Starmer's modest achievements all you like. But as he has actively alienated his own voters - on Gaza, protest rights, benefits, green policies, cruelty to immigrants etc - it makes no difference. It's not a mystery. When you tell people you hate them, they will hate you back.

Please help me escape daily #abuse from dark triad #Narcissist (psychiatrist diagnosed). $6001/$10000 to start life again from scratch. Dr fears I will die here if I don’t escape now.

#MutualAid
#MutualAidAustralia
#MutualAidMonday
#UrgentNeed

💕💸

bsky.app/profile/halc...

💙💞🫂

### Urgent Appeal: Help Anna Escape Abuse – Time is Running Out! 🚨EMERGENCY: Anna's Life Hangs in the Balance – Act NOW to Rescue Her from Abuse and Neglect!

Help me escape daily #abuse from dark triad #Narcissist (diagnosed). $6001/$10000 to start life again from scratch.

#MutualAid
#MutualAidAustralia
#MutualAidMonday
💕💸

💸Fund: chuffed.org/project/1619...
☕️BMaC: buymeacoffee.com/Halcionandon
🎁Amazon: www.amazon.com.au/hz/wishlist/ls/1B9A74NSROTQZ

If you follow Labour politics, I promise it's worth clicking on the link to find out who Mark, Marc, Luke and John are.
If you were part of the disability campaigning of the early 2010s, you will also find a few gasp-worthy moments.

Peter when I first looked at your comments lots were showing and now may of then have been very quickly labelled as spam… royalists, PR?!

Australia's state and services are trapping a woman living with severe ME/CFS in domestic abuse Woman living with severe ME/CFS in Australia trapped in a cycle of violence from domestic abusers to the punitive state & medical services.

Safe housing needed asap. Situation here is worse everyday.

Someone must have a spare room & some kindness?
Can pay $250wk board.
Can provide
meals.

My Story:
#SevereME patient Anna is still trapped in life-threatening #domesticabuse

#UrgentNeed #MutualAid

www.thecanary.co/global/world...

Please consider helping Anna, who is going through some pretty horrific stuff. She's provided details of how to help in her post, below.

www.thecanary.co/global/world...

"Freedom is having the right to live as you choose, not the right to choose how everyone else lives." - James Van Der Beek, Rest In Peace #NOH8

Desperate Streeting tries to distance himself from Mandelson Wes Streeting deleted all his tweets praising Mandelson, and now he's trying to act like he's a defender of Epstein's victims

www.thecanary.co/opinion/2026...

As an infertile woman Matt Goodwin's childess tax shows how much Reform hates women It sounds like something out of The Handmaid's Tale, but Reform's Matt Goodwin wants people who don't have kids to pay more tax

Reform's Gorton and Denton hopeful Matt Goodwin thinks people who don't have children should pay extra tax.

As an infertile woman, that shows me how much Reform really hates women

Me for @thecanaryuk.bsky.social www.thecanary.co/uk/analysis/...

Go submit your testimony to the House right now! And again (or if you miss today’s House deadline) to the Senate on Tuesday! You don’t need to live in Maryland—the idea is to show this is a global problem/global market. Here’s how to submit:

docs.google.com/document/d/1...

Thank you

Barrister accused of transphobia threatens Jolyon Maugham for defamation Last summer, Good Law Project accused barrister Sarah Phillimore of harassment and transphobia. Now, the barrister is suing its founder over the allegations

The transphobic barrister Sarah Phillimore is threatening to sue me for defamation - and we've published our response to her Letter Before Action.

🌷💞

Kansas just passed a monstrous bill enabling criminal penalties and vigilante lawsuits for trans people using the bathroom according to their gender identity and requires them to surrender their current drivers licenses and birth certificates if it does not match their sex assigned at birth.

The UK government didn't want you to see this report on ecosystem collapse. I'm not surprised | George Monbiot It took an FOI request to bring this national security assessment to light. For ‘doomsayers’ like us, it is the ultimate vindication, says Guardian columnist George Monbiot

Please spread this far and wide, as stories don't get much bigger than this. When the government blocks even the intelligence services from telling us we're heading for environmental catastrophe, you know we have a problem. A very big problem.
Thank you.
www.theguardian.com/commentisfre...

Karen update: Mental capacity assessment & response from East Sussex NHS Trust’s solicitors. Photo: August 2025 - Karen with her new PICC line 4 days after it had been put in. Hello Everyone Karen has now been in Conquest hospital for 1 year and 9 months. Karen is continuing to have TPN (IV f...

Latest update from the Gordon family about Karen Gordon - 15 October 2025

Karen has been in Conquest Hospital for nearly 2 years now.

All because the NHS do not have a scooby about how to treat very severe ME. 😩

#Justice4ME #SevereME

www.change.org/p/save-karen...

This is your reminder Savannah needs our help to stop the NHS starving her to death.

Please email the hospital she is in. Details in post below

www.thecanary.co/uk/analysis/...

#mecfs #pwME #GreatestMEdicalScandal

💙💙💙

TW:
More deaths of #pwME 💙

@ashleydaltonmp.bsky.social
@wesstreeting.bsky.social
What are you doing about the decades-long human rights crisis of #SevereME? Why are we expendable?

@tessamunt.bsky.social
@davetuller1.bsky.social
@georgemonbiot.bsky.social
#JusticeForME #GreatestMEdicalScandal

Over the last months and particularly one week Paula deteriorated very quickly. Talking became harder ...and Paula loved to talk.Feeding more difficult. Eating tiring needing longer breaks between each teaspoon. It took 3 hours to finish a small bowel of puree. We stopped watching short funny shows together. Forced into a bent over position, no longer getting to a window. She had loved standing with support briefly at the window, smelling fresh air, watching Hurley play in the garden.

Learned of another death of a friend with ME/CFS, this time someone I’d known for six years.

Very grateful to all of you who support work to relieve this terrible suffering.

🫂💙🩵

‼️Who has big following?
Please tweet me to them!

I need a safe place to live in #Melbourne
🚨Please help me escape #abuse/ #neglect / #CoerciveControl / #DV

#MutualAidMonday
#MutualAidAustralia
#HelpFolksLive #HelpSky #FundSky #MutualAidVoid #PWD #MARequest
💕💸🏡🏠🥺

See below 👇

### Urgent Appeal: Help Anna Escape Abuse – Time is Running Out! 🚨EMERGENCY: Anna's Life Hangs in the Balance – Act NOW to Rescue Her from Abuse and Neglect!

Please help me escape abuse.
Anything helps.
Info in Chuffed link.

💸Crowdfund: www.chuffed.org/project/1619...
☕️BMaC: buymeacoffee.com/Halcionandon
🎁Amazon: www.amazon.com.au/hz/wishlist/ls/1B9A74NSROTQZ
ᯓ➤Beem: Halcionandon

Please share.

#MutualAidAustralia
#MutualAid #HelpSky #MutualAidMonday