“Last year Royal Devon Exeter Hospital changed its care plan for Alice - for her to be fed lying down, a deviation from hospital's usual policy. The same hospital that treated Maeve two years before” Maeve’s death was preventable! 😡 bbc.com/news/articles/…

Forgotten faces of ME - 'harrowing' inquest, constant agony, and urgent call for change - Mirror Online mirror.co.uk/news/health/fo…

Ron Davis today at the Santa Clara County ME hearing: “..we think this disease is initiated when you initiate innate immunity…you can turn it back off by JAK-STAT Inhibitor…we have seen 1 patient in Australia who took it..within 3 days of taking the drug was completely cured..”

This is someting every single UK person with #LongCovid should also be doing #LongCovidKids 17 September is World Patient Safety Day We need health and care services that are #ThereForME #MEAction Network UK

We URGENTLY need your support! People can die from Very Severe ME related issues likely to happen when the condition is badly managed How you can help 1. Watch films about Severe ME bit.ly/3Tr5s0p & 2. Sign Open Letter by Severe ME patients bit.ly/4doeHpS

🧵 New 24-minute video from #MEAction Network & Patient-Led Research Collaborative "Understanding Post-Exertional Malaise - Dr Brayden Yellman" youtube.com/watch?v=cGQFGg… I thought this was very good. Great to have a doctor who gets it. #LongCovid #MEcfs #CFS #PwME #PostExertionalMalaise 1/

“Dear Doctors” written by Jes Gordon and performed by MEAction GA. #MEAction Georgia created this powerful video and they also have a #TeachMETreatME event coming up Sept.18 at 4 pm ET. The target is nursing students and medical professionals but all are welcome! Spread the word!

Patients with severe ME at risk of starvation, doctors say Well done #ThereForME Team ⁦ archive.is/2024.09.16-234…

Associated news articles: The Times: Coroner to report dangers of ME after Boothby O’Neill death Maeve Boothby O’Neill’s case highlighted an inability to care for patients who suffer with myalgic encephalomyelitis, or chronic fatigue syndrome archive.ph/2024.09.27-174…

Clip from today's BBC Breakfast Dr Binita Kane "The medical profession have got this wrong for a very very long time for decades" Binita also mentions the letter she wrote to the secretary of state supported by 280 health care professionals calling for urgent action.

Really good summary of what is happening in the bodies of those with #MECFS. Yes, there is a lot we still don't know. We desperately need more research to find out and develop treatments. But studies over the past 20 yrs have taught us ALOT! #MyalgicEncephalomyelitis #LongCovid

The NHS and the government have been told to act to prevent future deaths from ME (Myalgic encephalomyelitis) according to a new report from the coroner's office. The coroner ruled in July that Maeve Boothby O'Neill died from malnutrition caused by severe ME.

My Severe ME story interview is out in The Guardian today Quite an emotional read But it’s a story I needed to share For myself but more importantly, for my precious family #TryingToBe #ThereForMe theguardian.com/society/2024/o…