Arthur

@unrealarthur.bsky.social did:plc:lxncylp7ledwp5qlk35thtx2

ME Patient-ly Waiting for Biomedical Research | Volunteer @crunchme.bsky.social #GreatestMEdicalScandal @unreal_arthur crunchme.org

Bluesky’a katılma tarihi: 2 Şubat 2024

Takipçi: 378
Takip edilen: 907
Post: 68
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Arthur (@unrealarthur.bsky.social), 2 Şubat 2024 tarihinde katılan bir Bluesky kullanıcısı. 378 takipçisi var, 907 hesabı takip ediyor ve 68 post paylaştı.

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Binita Kane@binitakane.bsky.social4.11.2026 10:48
An honest appraisal would be that it’s a good start, that *might* impact care for people with ME over the next couple of decades, but very unlikely to without funding, investment in research, prioritising/ mandating clinical services and most of all political will.
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Binita Kane@binitakane.bsky.social4.11.2026 10:48
This is an important point. Whilst the development of the DHSC Final Delivery Plan for ME was a huge step forward, most of the suggestions that patients, clinicians like me and researchers made were rejected as the plan was not funded.
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Andrew Gwynne@theandrewgwynne.bsky.social4.11.2026 10:46
I’ll do what I can to relay some of the ‘battles’ I had in DHSC and how (because of my Long COVID experience) the attitudes changed: (a) they couldn’t fob me off and (b) I had the bit between my teeth because the previous Tory Minister had lied about where the ME Plan was up to - so I was annoyed!
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ThereForME@thereforme.bsky.social4.11.2026 10:42
1/4 📢 A short statement from ThereForME: We wanted to be very clear, following the health minister James Frith's comments on @goodmorningbritain.bsky.social this morning that we do not agree that the Final Delivery Plan for ME was co-produced with orgs representing people with ME.
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Adam@abrokenbattery.bsky.social4.11.2026 10:42
“This health issue has nothing out there for you… There are specialist clinics, but they don’t have any doctors… It’s life decimating. I’m in bed 22 hours of the day” Former Olympic sprinter @bethdobbin.bsky.social on her letter calling on PM Andy Burnham for more #MECFS research funding.
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