A Reader 📚🐾🧏‍♀️

Just your bi-weekly reminder that: - 92.0% of respondents with post-viral and related/overlapping illnesses (such as long COVID, ME, dysautonomia, hEDS, MCAS etc) were no longer under the monitoring or care of ANY NHS specialist department despite profound ongoing illness. - 88.9% of bedbound participants with "contested" conditions are too ill to access face-to-face NHS care AT ALL with no care plan in place. - 83.3% WERE FORCED INTO PRIVATE CARE BECAUSE NOTHING APPROPRIATE WAS AVAILABLE FOR THEM ON THE NHS AT ALL. I will keep posting this bi-weekly until someone within the establishment, or access to them, pays attention. Link in first comment. #longcovid #mecfs #MCAS #dysautonomia #POTS #EDS #lyme #hEDS #chronicillness #disability

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

Inspired by the amazing Beth Dobbin and the woeful uptake of ME/CFS training by healthcare professionals in the NHS, I've been working on trying to consolidate everything policymakers and open-minded healthcare professionals need to know into a five-minute video. If you think it's of use, please feel free to share it with whomever. 💚 Please remember, I'm bedbound and using my very limited spoons on paced advocacy work instead of hobbies I can no longer do, because I passionately believe in change for all of us. Grace and constructive engagement are always appreciated. 💚 #MEcfs #LongCovid #FND #MyalgicEncephalomyelitis #NHS #PublicHealth #MEawareness