iiinova — where your digital self keeps evolving

KarenG @tenaciousmumma.bsky.social · 04/03/2026

I’m raising money for St John Ambulance at this year’s London Marathon. Here’s why I’m doing it #teamsja #LondonMarathon2026 #MentalHealth www.justgiving.com/page/karen-g...

justgiving.com

Karen's fundraiser for St John Ambulance

Help Karen Galpin raise money to support St John Ambulance

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Reposted by KarenG

ThereForME @thereforme.bsky.social · 13/11/2025

🚨 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👇

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Action for ME @actionforme.bsky.social · 02/09/2025

1/2 📢 APPG on ME 📆 Wed 10 Sept | ⏰ 4pm The Group will open its enquiry into severe ME, hearing directly from people with lived experience. 👉 Ask your MP to attend: appgme.co.uk/contact-your... #SevereME #MECFS ⬇️

Poster with logos of Action for ME, the ME Association, and APPG on ME. Background shows Big Ben and the Houses of Parliament. A pink box with an envelope icon reads “Invite your MP!” Text below: “APPG on ME meeting: severe ME enquiry. Wed, 10 September, 4pm–5pm.

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ThereForME @thereforme.bsky.social · 18/02/2025

Today’s #ThereForME blog is from an anonymous healthcare worker She shares her experiences of developing #ME following a Covid infection and ideas for what an NHS that’s #ThereForME would look like. www.thereforme.uk/p/designing-...

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Niko Suvisto @nikosuvisto.com · 07/01/2025

Those, who so much insist that it’s all about not trying enough, have not tried as much in their entire lives, as a very severe #pwME tries not to deteriorate further and keep themselves alive. That bullshit narrative makes me so angry. Much respect to Karen and Sophia for sharing their story. 3/3

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KarenG @tenaciousmumma.bsky.social · 07/01/2025

I’ve written about a tiny portion of Sophia’s daily existence to bring very severe ME out of the darkness and onto the radar of those in a position to instigate change 🙏

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Tim Baxter @timinclimate.naruresearch.com.au · 18/11/2024

Bluesky tip for newbies: Bluesky has no real algorithm. Likes here do nothing but show the poster that you enjoyed their content. That kindness is always going to be appreciated by creators, but if you want to help to boost something here, you have to repost it so others see it. 🙂

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Reposted by KarenG

Daniel Padfield @padpadpadpad.bsky.social · 19/11/2024

Another difficult visit to Soph's. Tried to describe how it feels to watch her suffering and being unable to hold her. And how we maintain closeness despite her extreme pain. 18/11/2024 When was the last time we kissed? #pwme #mecfs #severeME padpadpadpad.netlify.app/posts/caring...

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Karen Hargrave @karenlhargrave.bsky.social · 19/11/2024

Incredible stuff from @jacobcolliermp.bsky.social! Thanks for standing up so powerfully for your constituent and all those whose lives have been fundamentally changed by ME/Long Covid 🫡 #ThereForME

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Karen Hargrave @karenlhargrave.bsky.social · 12/11/2024

I found some time recently to sit down and write for our #ThereForMe blog. In my day job I’ve spent a lot of time lately thinking about narratives. Some thoughts on why #ME and #LongCovid narratives matter - and how we can change them for the better. www.thereforme.uk/p/from-yuppi...

thereforme.uk

From ‘yuppie flu' to ’anti-recovery activists’

Why narratives around ME and Long Covid matter – and how to change them

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KarenG @tenaciousmumma.bsky.social · 28/11/2023

The pre-inquest review of Maeve Boothby-O’Neill’s death was yesterday. In today’s Times: “The NHS’s inability to care for seriously ill patients with severe cases of the debilitating disease ME requires urgent attention, a hospital chief told an inquest.” www.thetimes.co.uk/article/60aa...

thetimes.co.uk

Hospitals have no services for most severe ME cases, coroner told

Times journalist seeks answers after death of daughter aged 27

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KarenG @tenaciousmumma.bsky.social · 05/11/2023

Fireworks. Great if you don’t have a severely ill loved one with sound and vibration sensitivity - and/or a dog 😡 #verysevereME

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