#ThereForME
@ThereForME_UK
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Today we’re celebrating a year to the day since @KarenLHargrave & @GoreLloyd launched #ThereForME! We had a busy day yesterday responding to the Delivery Plan release. It’s clear how much more our campaign has left to do - but today we’re reflecting on what we’ve done so far.
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👉 a detailed and helpful set of tips for pacing and safety in the kitchen from @jdibon 's website by guest author Jo Southall 👉 Carer Rosie Barrett writes for @ThereForME_UK about her sister's experience of hospital care whilst suffering with very Severe ME
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In today's Substack post we share news about what steps are currently being taken to support those with ME and Long Covid. Link in next post 👇
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Great to see this upcoming conference from our friends at @OmegaOxon. You can reserve tickets to attend in person or via Teams 👇
Full programme now out! Join us on 13th November at 5pm for an OMEGA hosted mini conference featuring talks from Prof Karl Morten and colleagues. https://t.co/JoHdinoyl8
#ME #CFS #Lyme
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Earlier this year, @wecrunchme created a report on the UK ecosystem emerging around solving ME/CFS and long COVID, in collaboration with the wonderful @ThereForME_UK 🌱 The goal is to help sharpen our advocacy, and make it clear where support is needed & where gaps remain. V
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"It’s not enough for @NHSuk to have a 1 size fits all model for #ME it's essential that it is flexible enough to accommodate patients’ individual care needs Until then #pwME will continue to suffer needlessly & potentially deteriorate when trying to access healthcare 👇
You can read Rosie's post here 👇 https://t.co/YCaUlVYeIg
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You can read Rosie's post here 👇 https://t.co/YCaUlVYeIg
thereforme.uk
My sister’s experience of very severe ME in the NHS
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Today's guest blog is from @rozzybarrett, who writes about her sister Alice's experiences. Rosie outlines the challenges people with v. severe ME face navigating sensory sensitivities, at home and in hospital - and the creativity & flexibility needed to provide safe care.
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It would be lovely to celebrate some of the journalists in print and broadcast media who have told our stories and raised awareness.
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Which researchers do you think deserve to feature in the #ThereForME advent calendar this year?
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