"ME is a very dangerous and debilitating condition." Heather Gordon, whose daughter Karen has severe ME, speaks to Sarah-Jane Mee. It comes as there have been calls for specialist care on the NHS. 📺 Sky 501

Sky News put Karen's case to the NHS trusts involved in her care:

My #longcovidkid, now 16, has been a in a high acuity, isolation room, in the same hospital for 365 days with no single night out; tube/PN feed, various stomas and suffering severe autonomic dysfunction. Can’t walk, eat, drink, perform basic bodily functions. This is long covid/ME.

@skysarahjane Thank you for covering Karen’s situation. She’s not the only young woman stuck in an NHS hospital sadly. We desp need MSM adding pressure on the Govt to invest in research. In the meantime, hospitals need to follow NICE guidelines & listen to patient advocates.

@skysarahjane Thanks so much to Sky News for covering Karen’s case. Let’s hope East Sussex Healthcare NHS Trust and an I/V feeding (TPN) centre will facilitate remote setting up of home TPN for Karen to save Karen & to get her home asap with TPN without her going to a TPN unit – Karen & family

@skysarahjane It’s heartbreaking that even after what happened to Maeve, and too many others, no real progress has been made for people with #SevereME dependent on a PEG for IV feeds & fluids. Why should this be? Sign the petition, RT & follow #SaveKarenGordon story:

@skysarahjane Thank you for sharing #savekarengorden story, as she teeters on a knifes edge and needs to be cared for at home with the correct feeding in place where she can quietly recover from this ordeal. Other patients have done so and improved. This situation is not new.

@skysarahjane The fact most people would have no idea of how dangerous, difficult & Debilitating ME/CFS can be from the naf UK NHS website is a huge problem. This truth shouldn’t be news or a revelation. The NHS itself *made* many people severely ill by managing us badly in the early stages

@skysarahjane Many thanks for such a detailed piece.

@skysarahjane Just seen the longer report where you interview Anne Gregorowski from BACME. BACME is the Emperor with no clothes that Sarah Boothy described in your earlier interview. There is NO NHS treatment for ME, the services aren’t following NICE. There is nothing.

@skysarahjane It's vital that @NHSEngland and @NHSEnglandNMD move quickly to put in place measures to prevent the death of more #MyalgicEncephalomyelitis patients.