🤩 Let's celebrate all 23 second wave orgs who have signed the open letter to @rcpsych!
😍 ME/CFS San Diego
🎊 Bury & Bolton ME/CFS & Fibro Support Group
🎈 Long Covid Aoteroa (New Zealand)
🪅 Alianca Millions Missing
🎏 Long Covid Schweiz
🎖️ Cambridge ME & Long Covid Support
This fresco from the Imperial Villa in Pompeii depicts the Greek myth of Daedalus and Icarus. It shows the aftermath of the story, with Daedalus flying safely above while Icarus lies dead on the beach below.
‘The withholding of lifesaving care is not a theoretical concern: it is a documented, devastating outcome of misapplying psychosomatic models to a serious, organic illness.’
BMJ opinion piece on treatment of #ME patients.
Too many die Too many suffer for decades.
#MEAwarenessDay
The world's first genomic study into ME, or Myalgic Encephalomyelitis, has been announced.
Researchers are hoping that by building a genetic map of the illness, it will help pave the way for a future diagnostic test and even treatments.
But charities have warned that there is more to do and this must only be the start.
#MEAwarenessMonth can be overwhelming & demoralising while our basic needs as #pwME remain unmet & it seems impossible for us to be heard by those who should be changing this
The #ME orgs must do far more on our behalf & the burden of responsibility for change mustn't be on #pwME
Excellent piece in New Scientist on exercise research in #LongCovid and #MECFS.
Highlights studies ignoring post-exertional malaise, the PACE trial, and comments from David Tuller, Tom Kindlon and Todd Davenport.
Full article:
https://t.co/MxaRUXqK7E
Helen Gibson and @TedMonroe91 on BBC Radio 4’s Feedback challenge Suzanne O’Sullivan’s claims that #LongCovid is largely psychosomatic when she was interviewed on Amol Rajan’s podcast. Mentions #MECFS, NICE’s 2021 guidance and DecodeME genetic findings.
@MEAssociation The situation for #pwme is still appalling - no treatments, ignorant treatment in hospitals, and clinics still offering variants of CBT and Graded Exercise. This is patronising and bizarre.
"Over-diagnosis" is a fiction designed to cast doubt on historically under-researched diseases which disproportionately affect women. Patients either meet diagnostic criteria or they don't.
@BBCr4today@amolrajan@BBCSounds Please stop platforming this woman. Why don’t you speak to those doctors and scientists with *actual” expertise in long COVID, POTS, ADHD, autism & the other non-psychosomtic conditions this woman doesn’t have the first clue about and then you might realise the level of damage 1/