Stephanie Stott

#PwME & #MyalgicE Advocacy • Founder & Content Curator @thetrove_cambs (“sick leave”) • Creativity & Chronic Illness at:

[Stephanie Stott @steph__stott]

Can someone send out a press release that simply states in large letters:

“CHRONIC FATIGUE is a SYMPTOM of MULTIPLE ILLNESSES.

Myalgic Encephalomyelitis/Chronic Fatigue SYNDROME is an ILLNESS of MULTIPLE SYMPTOMS.”

#PwME #MECFS #MyalgicE
P.S. #PublishThatGuideline 🪧

[Frances Ryan @DrFrancesRyan]

There are many British commentators who have made several posts showing deep concern for Rachel Reeves over the last 24 hours but apparently misplaced their phones whilst hundreds of thousands of disabled people were terrified of losing the benefits they need to live.

[Dr Jay Watts @Shrink_at_Large]

“We just want to help people work.”
That’s why we’re cutting PIP which enables many people to work.
And scaling back Access to Work.
Because… well… the goal was never inclusion.
It was disappearance.

[It's M.E. Linda 💙 😷 @HappyHoundHouse]

Excellent 🧵 on #SevereME
#MyalgicEncelphalomyelitis

#DontLetMEDie
#MEAwarenessHour

[Nick Pettigrew @Nick_Pettigrew]

Five years ago today I took the best photo I’ll probably ever take. I like good photos and have a four hour bus journey shortly so need entertaining. Feel free to reply with the best photo you ever took. Accompanying description also welcome.

[Lucy Webster @Lucy_Webster_]

You can support assisted dying in principle and still acknowledge that disabled people's fears are valid and justified, or that we need better palliative care first, or any number of things

Two things can be true at once

[Candace D. @DiaryofaSickGrl]

Barometric pressure changes 😵‍💫

[Laura Elliott @TinyWriterLaura]

this is heartbreaking and infuriating, and it’s every disabled person’s worst nightmare: to have the existence of good days being used to justify pulling support when you need support the majority of the time. it’s a way of forcing disabled people out of public life

[Stephanie Stott @steph__stott]

@BiscuiteersLtd @HorribleGrandma 😍🤞

[Biscuiteers @BiscuiteersLtd]

It’s Biscuit Week on #GBBO… you know what that means! Giveaway!
To win our Bake Off Tin:
👩‍🍳 Retweet
👩‍🍳 Like
👩‍🍳 Mention someone you’d share these biscuits with!
👩‍🍳Make sure you’re following us!

5 winners announced tomorrow…

T&Cs apply.

[#WOMENSART @womensart1]

Shannon Clegg is a designer-maker based in East London who molds dried pressed flowers into vessels #WomensArt

[Candace D. @DiaryofaSickGrl]

Even though I’m very open about my chronic illnesses I still “hide” plenty from the people in my life because people don’t want to know what it’s really like mentally & physically to be this sick. And a lot of people are just in disbelief so I hide to avoid both judgement & pity

[James Lucas @JamesLucasIT]

Thread on the real size of things 🧵

1. Titanic compared to a modern cruise ship

[KarenG @tenaciousmumma.🦋.social @tenacious_mumma]

Exactly this 👇🏻 Parent/family/partner carers all over the world are shouldering a HUGE responsibility - nursing seriously ill loved ones, shielding them from harm, often with no training, support or guidance on this complex and potentially catastrophic illness. It’s just madness.

[Steven Spohn (Spawn) @stevenspohn]

A phlebotomist was sent to my house to do a blood draw unbeknownst to me. My nurse explained I was busy and her response was "He is crippled what could he possibly be doing that's so important I can't do my job?!" I was on a business call with Microsoft securing $100,000 for disabled kids.

For not being available for this unscheduled visit I was banned from Quest Diagnostics services, unable to get blood tests completed, for a year. As much as I love home healthcare workers, some of them do not respect disabled people actually have lives.

[Scott Bryan @scottygb]

As spotted by @Scottish_T1, Channel 4 have worked in the Paralympics into all of their programme synopsis today.

[Anna Landre ♿️ @annalandre]

I’m a wheelchair user in Paris for the #Paralympics2024 opening ceremony. The wheelchair viewing platform is entirely taken up by non-wheelchair users.

“Welcome to Paris!” 🫠

[Karen Hargrave @karenlhargrave.🦋.social @KarenLHargrave]

For our #ThereForME supporters - a heads up that we’re hoping to have a segment going out on @BBCBreakfast tomorrow.

Expected to go out circa 7am - pre-record with me & @oonagh_cousins + @BinitaKane live in the studio.

We’ll let you know any scheduling changes!

[Dan Wyke 🦠➡️🧠🔥 @Dan_Wyke]

I've just listened to @_NatashaDevon's programme again and wanted to transcribe @johnthejack's extremely powerful testimony about living with #MyalgicEncephalomyelitis:

[Carly Welton @carlywelton]

Powerful testimony from @agy_lena on Natasha Devon's @LBC show last night. Talking about #SevereME and everything she's lost, as well as the power of social media for our community. Thank you to @ABrokenBattery for making it easy to create this clip. #MECFS