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Today (8th August) marks #SevereMEDay In this post, the World ME Alliance highlights the experiences & mistreatment of people with #SevereME in hospital from across the globe Safer hospital care for people with #SevereME must be prioritised worldwide #SevereMEDay #pwME #MECFS

Today, on #SevereMEDay, we commemorate the people living with severe #MECFS. Their daily struggle with this debilitating disease is beyond our imagination and mostly invisible. We recognize their suffering and the tremendous challenges they and their caregivers face every day.

Echoing the thanks from Chris Ponting & the DecodeME the ME/CFS Study to the thousands of people with #SevereME who took part in #DecodeME 🙏 #SevereMEDay #MECFS #pwME #MyalgicE #MEResearch

*TW upsetting content, death* Following the Coroner's conclusions from the Inquest into the tragic death of Maeve Boothby O'Neill, we have issued the attached statement. Read more: actionforme.org.uk/news/maeve-boo… #MaeveInquest #SevereME #pwME #MyalgicE #MECFS

It's important that Maeve's inquest recognised the seriousness of this awful illness. What is more important is the final hearing on Sept 27 to consider a Prevention of Future Deaths report.

The public health minister Andrew Gwynne MP understands ME and says Maeve "fell through the cracks". Actually it's worse. She fell into a gaping hole in our healthcare system where there was no specialsit care for her illness. This was a systemic failure not the fault of one hospital.

and, to people with ME, Tell Your Stories. Don't rant on twitter. Tell your MP, your local newspaper or website, your local radio station. And all you journo colleagues who have told me about your friends and relatives with ME, make their voices heard. Now.

"It's been like reliving Maeve's death all over again." Sean O'Neill, father of Maeve Boothby-O'Neill who had ME and died a few months after she asked her GP for help, speaks following the inquest into his daughter's death. trib.al/EYUDmea 📺 Sky 501, Virgin 602

My deepest sympathies go out to Maeve’s family. I’m committed to improving the care and support for all those with #ME. We’ll publish a plan which will focus on boosting research, improving attitudes and education & bettering the lives of people with this debilitating disease.

Thank you ⁦⁦Andrew Gregory⁩ ⁦Guardian news⁩ for raising much-needed awareness of #MyalgicEncephalomyelitis #MECFS ⁦Action for M.E.⁩ theguardian.com/society/articl…

Such powerful words despite, or maybe in spite of, all the pain and loss

Couldn’t agree more. Another great piece of coverage from JANE DODGE Channel 4 News Thank you from us all Action for M.E.

Another brilliant piece from Channel 4 News JANE DODGE #MyalgicEncephalomyelitis #MECFS

I was so incredibly sad to hear the news about Francis. He was an amazing colleague in the World ME Alliance. Thoughtful, sensitive and very committed to improving the lives of people with ME. Sending condolences to his family, friends & colleagues including those European ME Coalition (EMEC)

📢#ME is clear to see in the blood of 1,455 #pwME <New Preprint, not peer reviewed> 116 blood molecules or cells are significantly different between #pwME and population controls & in both females & males & these differences are NOT due to inactivity medrxiv.org/content/10.110… 1/4

Only for a handful of 3,237 blood traits was ME’s effect explained partially by inactivity. By contrast, ME had a significant direct effect - not due to inactivity - on 290 traits. Note: no single trait/molecule can cleanly distinguish #pwME from controls 2/4

For this we used up to 1,455 #pwME in UK Biobank and 131,303 controls – the largest ME blood ‘omics study to date. Results were highly reproducible between females and males indicating that female and male ME are similar 3/4

Such a large number of replicated and diverse blood biomarkers that differentiate ME cases from controls should now dispel any lingering perception that ME is psychosomatic This was a fab collaboration including Ava Khamseh, nima hejazi and Sjoerd Beentjes. 4/4

Exciting to see these preprint results, shared by Chris Ponting, from the largest blood 'omics study to date 👇 "#ME is clear to see in the blood of 1,455 #pwME" medrxiv.org/content/10.110… #pwME #MEResearch #MyalgicE

Great to see Trude Schei, Arild Angelsen & Kirstian Sommerfelt honoured for their #MEcfs research. [Their new FUNCAP questionnaire assesses ME disability. Their pan-European study looks at health and social issues (and shows two age peaks for illness onset)]