NICE are allowing the same people who have propagated bad science to write the future #MyalgicE guidelines. We demand #ScienceNotStigma. Take Action Now! Use our easy tool to email NICE and let your voice be heard! #pwme #MECFS act.meaction.net/page/7697/acti…

Quote from late ME advocate, Alwyn Catchpole

Haha haha That's painfully accurate (btw I definitely was a risk taker once)

File under things that make me happy

My hidden talent is turning any thought into a sad one!

I added a video to a YouTube playlist youtu.be/M2Hl-lkupcc?a 10 Abnormally Large Dogs In The World

People of Twitter I have uncovered the origins of GET: this Monty Python sketch 😆 youtube.com/watch?v=52EEzB… #stopGET #pwme #MEcfs #PACEgate

I have a formal protest to issue against #MyalgicE Rolling over in bed should never make you feel like you're going to pass out, nor make you breathless and tachycardic. Even if you with a cold and a neck making dizziness worse. Someone take note and fix #MillionsMissing

My friend Naomi Whittingham has set up a new website for her writing on ME advocacy #MyalgicE #MillionsMissing I urge you all to check it out, especially if you are not a sufferer. her writing is wonderful Words from a Hidden World alifehidden.com/2018/11/25/wor… via @alifehidden

I support the #StudentStrike

#HappyHanukkah to Jewish friends. The story about survival and the light in dark times has universal meaning. Here's to better tomorrow free from hate

August 8 is #SevereME awareness day. This illness can cause the most intense suffering imaginable. It can trap people in beds in darkened rooms for decades. It can take away your ability to eat and yo speak and to… instagram.com/p/B04v4fMJOhq/…

Greta speaks for me #climateChange #ClimateWeek2019 #ClimateWeek

So proud of my friend Kara

I’ve been bedbound with severe ME for many years, and rely on oxygen and 24 hour care. I’m about to release an album. The vocals were recorded from my bed, one line at a time. It’s Still M.E, is released on Sat. 8th August. #KaraJane #SevereME #SevereMEWeek #NewMusic

It would mean the world if you would support Kara's incredible work. She's close friend, it's a wonderful work and the message and proceeds all about severe ME She may not have long in this world. I'd love to see her recognised while she's still jere

Is this a dream? ‘It’s Still M.E’ is currently in the top 50 iTunes & 4th BEST selling album on Amazon Could we make the Official Charts I was also on telly singing from my bed BBC News (UK) Download here: lnk.to/KaraJane Each download raises money for #SevereME #KaraJane

#MondayMorning We’re at #20 on iTunes! This is unbelievable!♥Thank you! Every download is raising funding for vital #SevereME research! Download 'It's Still M.E'—> lnk.to/KaraJane 'I’ve been bedbound with severe ME for many years, and rely on oxygen and 24 hour care.'

A lovely write up by Birmingham Live Thank you! Please keep sharing and spreading the message #severeME Download Here: lnk.to/KaraJane