Karen's fundraiser for St John Ambulance Help Karen Galpin raise money to support St John Ambulance

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...

Write to your MP Write to your MP Substack: https://www.thereforme.uk/ Linktree: https://linktr.ee/ThereForME About #ThereForME #ThereForME is a campaign led by patients and carers, calling for an NHS that’s there...

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

🚨 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👇

@libdemcam.bsky.social it would be great if you could attend 🙏

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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📢 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

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More propaganda about the Lightning Process, this time in the form of a New Zealand marketing effort cosplaying as an academic paper. virology.ws/2025/03/02/t...

Yes please

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-...

That’s interesting Paula. Have been thinking about buying one too. Which one did you buy and would it power other electrical appliances - like an oil filled radiator for example?

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

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 🙏

Deleted. Sorry Emma x

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. 🙂

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...

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

Can I be added please?

From ‘yuppie flu' to ’anti-recovery activists’ Why narratives around ME and Long Covid matter – and how to change them

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...

Hospitals have no services for most severe ME cases, coroner told Times journalist seeks answers after death of daughter aged 27

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...

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

Petition: Protect the NHS and All Healthcare: Require #MasksInHealthcare We urge the Government to implement a policy requiring mask wearing in all healthcare settings including hospitals, clinics and GP practices for staff, visitors and patients. An FFP2 minimum should be...

Deadline for signing the (UK) petition for a requirement for masks in healthcare - deadline is tomorrow. Please sign and share.
petition.parliament.uk/petitions/63....