#ThereForME’s
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tomkindlon.bsky.social
Rosie Barrett, writes on #SevereME & hospital care
www.thereforme.uk/p/sensory-he...

"Hospitals should be places of healing – but for people with severe ME, they are often sources of harm."

Screenshot from @chronicliving123.bsky.social
newsletter

chroniclivingtherapy.com/5-elsewhere-...

#MEcfs
Rosie Barrett, writes on Severe ME and hospital care Rosie Barrett, full time carer for her sister who has very severe ME, writes for ThereForME‘s website about the way that hospitals fail people with ME/CFS and what is needed to support patients better. She writes about the UK but readers from around the world will recognise shared issues. Hospitals should be places of healing – but for people with severe ME, they are often sources of harm. The NHS urgently needs to create sensory-safe spaces. These aren’t ‘nice-to-haves’ – they are essential for people with ME and others with complex neurological conditions. The one-size-fits-all approach to hospital care simply does not work for patients like Alice. from Sensory Hell and Medical Harm by Rosie Barrett on the ThereForME website
October 31, 2025 at 1:51 AM
thereforme.bsky.social
It’s #ThereForME!

Our message: “Thank you for all the support this year – it means the world to us! We’re thinking of you this Christmas. We’ll keep fighting for you in 2025. Lots of love. Karen, Emma, Oonagh”

#PatientSafety #pwME #pwLC #ThereForME
A pretend polaroid shows Emma Gore-Lloyd, Karen Hargrave and Oonagh Cousins posing for a photo holding a #ThereForME Christmas card. The image on the card shows the dark blue Christmas tree, decorated with sparkling fairy lights, baubles and a star on the top, in a snowy landscape against a starry backdrop. The design is in the #ThereForME colours. This second image displays #ThereForME’s handwritten message. It reads “Thank you for all the support this year – it means the world to us! We’re thinking of you this Christmas. We’ll keep fighting for you in 2025. Lots of love. Karen, Emma, Oonagh”
December 17, 2024 at 9:00 AM
murtoz.bsky.social
And on the campaigning side
#ThereForME's relentless campaigning for us: bsky.app/profile/ther...

As well as all the work by bsky.app/profile/meac...
December 3, 2024 at 12:31 PM
cabruce.bsky.social
I can’t recommend the #ThereForME’s weekly substack posts highly enough.Informative, upbeat and honest. These 3 women have done more for #ME in 4months than I would have thought possible. A truly democratic setup too. Do sign on for free.
#ME #LongCovid 👇
karenlhargrave.bsky.social Karen Hargrave @karenlhargrave.bsky.social · Nov 19
Our wonderful @oonaghcousins.bsky.social took the reins for today’s #ThereForME update.

Feat. news from across the continent, plus some very poignant reflections on her story and how it is told.

open.substack.com/pub/therefor...
Campaign Update #11: #ThereForME across the continent
From #ThereForME HQ, to Rome and Switzerland
open.substack.com
November 19, 2024 at 10:27 AM
julesahouston.bsky.social
Following #ThereForME's announcement, let's keep the momentum going! Alexis' open letter has already gathered 391 signatures. Let's aim for 500 by the deadline tomorrow. Carers, allies & HCPs, your support matters, please sign. Let's send a strong message to the ME Association @alexisme.bsky.social
alexisme.bsky.social Alexis Gilbert @alexisme.bsky.social · Nov 17
After an article by the chairman of the ME Association I’ve drafted a letter. You can add your name to the bottom or DM me l'll add it. I've written it from patients but if you're a carer, ally or health professional, just note after your name eg (Carer for pwME etc)
docs.google.com/document/d/1...
Letter to MEA Nov 2024
If you notice any errors, please correct them but track changes so I can see them. Dear ME Association We are writing to you as patients with ME. We were shocked and offended to read the editorial...
docs.google.com
November 18, 2024 at 11:33 PM