A massive thank you to ActionForME and @longcovidsupport.bsky.social for inviting me to speak at today’s joint #LongCOVID and #ME All Party Parliament Group meeting, alongside Profs @daltmann.bsky.social @cgatist.bsky.social and David Strain.
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I dedicated my talk to Emma (not her real name), who was a happy, healthy, active 14yr old in 2021. Sadly her COVID infection led to Long COVID, which led to very severe ME.
In 2025, she’s been bedbound for nearly 3 years, fed with a tube and cared for 24/7 by the parents. She has NO NHS support, other than her GP and a dietician, as she is ‘too severe’.
I talked about the history of ME, how and why we have got here, I mentioned @rageshriwrites book ‘Unheard’ and how patients with ME have been dismissed for decades.
I talked about the need for a national strategy for all post-infectious illnesses and investment in research, plus funding to implement the government’s Final Delivery Plan. I spoke about the health economic impact of ‘doing nothing’.
I am hopeful that people are listening and that we can drive change. With well over a million people affected by Long Covid and ME, we can’t afford not to.
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