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 ⬇️

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...

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-...

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 🙏

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

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...

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

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....