Mike

My report has now been published! - Just under 70% of those surveyed are at least housebound due to their chronic illness. Over a quarter are bedbound or hospitalised. - Yet, 92.0% of respondents were no longer under the monitoring or care of any NHS specialist department, and 72% were no longer under primary care (GP) monitoring. - 88.9% of bedbound participants with "contested" conditions are too ill to access face-to-face NHS care at all, with no adaptations and appropriate travel arrangements being facilitated so they can get the help they need – which is rarely available within the NHS. This doesn't even scratch the surface of the shocking revelations I encountered through this research. Forced to Go Private is now live, with voiceover available. As always, this is free of charge. (Link in first reply.) I don't usually ask this, but shares of this report would be extremely useful, so it doesn't just remain within our echo chamber. Therefore, please consider retweeting or passing the link on. This is a scandal and is completely unsustainable, both for patients and the handful of private services who are able to offer at least some of the help we need. Thanks once again to the amazing volunteers who took part in this survey, despite being in such poor health. I truly hope this does you justice and that together we can make change. 💚 #NHS #longcovid #dysautonomia #MCAS #MECFS #EDS #vaccineinjury #PAIS #POTS #lyme #scandal #medicalgaslighting

Pretty devastated to have become officially unemployed due to severe and incurable sickness, at the age of 35. For all those ghouls out there, I continued to work from bed until I was briefly hospitalised with dangerous heart rhythm changes during an autonomic crisis in April 2025, after having been ill since a mild COVID infection in 2021. As everyone who knows me is aware, things drastically deteriorated from that hospital incident, leaving me almost completely bedbound and reliant on full time care. No wedding. No children (apart from Rocky the cat) No job. No economic activity. My NHS GP is an absolute diamond and has finally secured my bedbound status so I can get some the basic blood tests and injections I need at home. She's also taken on all the private specialists' prescription requests and never once asked me if I'd considered getting some sunlight and going for a walk. However aside from her, the NHS does not give a F***. The government does not give a F***. The media does not give a F*** (apart from George Monbiot and less than a handful of others) My question is therefore simple. HOW DARE THEY COMPLAIN ABOUT SICKNESS RELATED ECONOMIC ACTIVITY WHEN WE ARE SCREAMING OUT FOR HELP TO GET BACK TO WORK??