#ThereForME

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#ThereForME

#ThereForME

@ThereForME_UK

Katılım Temmuz 2024
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#ThereForME
#ThereForME@ThereForME_UK·
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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#ThereForME@ThereForME_UK·
This week we’re celebrating the work of other advocates, researchers and organisations. Read this week's #ThereForME post to find out more about developments in research, Long Covid Awareness Day and a #ThereForME hiatus. 🔗 in next post 👇
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Carole Bruce
Carole Bruce@CaroleBruce17·
So grateful to Tessa Munt MP for doing such a powerful substack post on behalf of #ThereForME today. We need more MPs to sign up to the APPG for ME and plead our case strongly enough to get things done for #pwME despite opposition from the BPS lobby and all their servants.
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#ThereForME
#ThereForME@ThereForME_UK·
We're delighted to share today's #ThereForME blog from friend of the campaign @tessamunt. In her blog, Tessa lays out the case for change and how to get involved. Link in next post 👇
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#ThereForME@ThereForME_UK·
✍️ A short survey from our friends at ME Local Network! They are looking at the experience of people with chronic illness on using apps to manage or track symptoms. Link in next post 👇
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Adam
Adam@ABrokenBattery·
ME/CFS Delivery Plan 6 months on Empty words and no concrete action Severe ME patients still being failed, Savannah’s case shows the human cost of inaction. Training uptake is feeble. Research is moving mainly through charities, not government.
#ThereForME@ThereForME_UK

Today's #ThereForME blog takes stock progress in key areas six months on from the publication of the Final Delivery Plan for ME. We look at progress in terms of: ➡️ Improving care for severe and very severe ME ➡️ Boosting education and training ➡️ Accelerating research

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#ThereForME
#ThereForME@ThereForME_UK·
Today's #ThereForME blog takes stock progress in key areas six months on from the publication of the Final Delivery Plan for ME. We look at progress in terms of: ➡️ Improving care for severe and very severe ME ➡️ Boosting education and training ➡️ Accelerating research
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Tracey Burgess
Tracey Burgess@TraceyABurgess·
People with ME are trying to survive. This is NOT about *preferences*. "Most difficult to read in our most recent rejection was a persistent framing of James’ needs as preferences: that he prefers not to verbalise and that he does not like having people in his room with him."
Katy B@KatyBruce108

@KarenLHargrave on accessing CHC for pw V Severe ME "in a context where @NHSuk is not equipped to provide James with any meaningful medical treatment isnt covering the costs of the care he needs to avoid further deterioration the very least they could do?" thereforme.uk/p/why-is-conti…

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#ThereForME
#ThereForME@ThereForME_UK·
In this week's #ThereForME blog our co-founder @KarenLHargrave writes about the challenges she and her husband James have faced accessing NHS Continuing Healthcare funding. She explains why CHC funding for very severe ME is an issue that deserves attention. 🔗 in next post 👇
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Keşfet

@tessamunt @SharonHodgsonMP @GoreLloyd @KarenLHargrave @elonmusk @BarackObama @taylorswift13 @cristiano