‘Feminist, Writer, Linguist. Wannabe diplomat with her Irish passport, a gift for Russian & a balanced interest in Israel/Palestine.’
#MEKills #PlanForME #JusticeForME #MaeveInquest
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#PlanForME
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A candle flame at dusk
Happy Birthday Maeve, you should have been 31 today.
Please remember her for who she was, not how she died. Feminist, Writer, Linguist. Wannabe diplomat with her Irish passport, a gift for Russian & a balanced interest in Israel/Palestine.
#MEKills #PlanForME #JusticeForME #MaeveInquest
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The inquest into how Maeve died from medical neglect of #ME/cfs in 2021 found in 2024 there are no Consultant doctors for ME anywhere in the UK. She became unable to wash her own hair; later unable to chew.
#MaeveInquest #PlanForME @ashleydaltonmp.bsky.social @rthonwesstreeting.bsky.social
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THIS is who should have written all three NHS e-learning modules on ME/cfs. www.youtube.com/watch?v=FdU2... @ashleydaltonmp.bsky.social
Thanks to @joanmcparlandmbe.bsky.social (who should also have been invited to #PlanForME when Scotland had a voice through @meactionuk.bsky.social)
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Patient safety reforms at Action for ME could start by consulting with legal experts to retrain its front line staff on Safeguarding, for both children and adults, and recruiting a more qualified Medical Advisor. In parallel.
#PlanForME #JusticeForME
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I hope @actionforme.bsky.social applies for this award, even if they may be too small to be eligible. Publication of the #PlanForME and #DecodeME is the culmination of work they led on. The charity could then use these funds to lead on patient safety #pwME
www.kingsfund.org.uk/insight-and-...
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@ashleydaltonmp.bsky.social if you enjoy negotiating this is an ideal opportunity for you to correct the errors of your ministerial ancestors and get this replicated, or at least lined up to be replicated. Pls ask @BinitaKane for how this could be done. Recovery is possible.
#PlanForME #JusticeForME
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Prusty's new pre-print is out. Please somebody apply for MRC funding to test this in a replica study. We know from observation the mitochondria are affected. This . . . could be how. #Research #ME #PlanForME
www.medrxiv.org/content/10.1...
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I can promise you these politicians care. As do many others. Abolishing NHS England was the only way to get patient safety on its agenda. How mad is that?!?
Publishing the #PlanForME is a huge achievement given all you have said.
70 million rely on NHS provision. Reprioritising services is slow.
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Beautifully articulated. Thank you. It's good to read about some recovery from #ME being very severe. So many more with #LongCovid need to know this can get a bit better with enough care from others.
#PlanForME @oonaghcousins.bsky.social #ThereForME
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prevent the emergence of drug-resistant pathogens."
#PlanForME @rthonwesstreeting.bsky.social prevention is better than (no) cure.
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The NHS training Module 3 needs urgent review by severe & very severe experts 🤔
The most appropriate EXPERTS in Severe #ME are obviously the patients & the carers themselves 🙏, so why are they are prevented by NHS from accessing it to give feedback 😳?
OPEN ACCESS 🙏
#PlanforME
#pwME
#pwLC
#SevereME
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🧵 #PlanforME
The NHS e-Learning for ME needed revision by people with lived experience of PEM before it was published but, because there is no expertise in ME anywhere within the British Medical establishment, this came from 'the best we have' at the time it was written.
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The media are really building up a head of steam on ME/LC. #pwME help keep the issue in the public eye - contact press, local MP, local Healthwatch/ ICS. We need to make sure the @DHSCgovuk #PlanforME doesn’t end up as toothless and ineffectual as the 2006 initiative
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