Top Tweets for #MEAWARENESS

Whilst the human cost & immense suffering ME/CFS causes should always be front of mind, from a policy advocacy perspective it is also very useful to highlight the economic cost this disease imposes on society at large. We've pulled together 5 published estimates from the US, UK, Germany and Australia 🇺🇸🇬🇧🇩🇪🇦🇺 These suggest that the economic cost of ME/CFS reaches or even exceeds 1% of GDP every year. For the countries shown, this means tens or even hundreds of billions of dollars lost each year - and is an important part of strengthening the case or far greater investment research into this terribly neglected disease. #MECFS

Today is severe ME day. From September 2020 to summer of 2025 I was in the category of severe. It was hell, there are no words to describe what it feels like to have severe ME, I do not think mere words do it justice, you have to live through it because something as profoundly disturbing as severe ME is something that can only be felt having lived through it. I am now moderate, I can at least take some walks during the day. But during my days of severe ME my universe was the bed, and I was lucky I could still at least listen to music and watch TV. Too many of us cannot even do that. It is forever a stain in society that people with such immense suffering have been neglected by society, dismissed by doctors, laughed at by institutions. It is forever a stain in the soul of this planet that we allow this to continue. May there be a day where severe ME no longer exists, may the day come when all these beautiful souls trapped in rooms are able to roam free, like they deserve. We are human, not caged birds. We can dream, one day this illness will be treatable

The Compassion Gap In this video explore the gap in compassion between ME/CFS deaths and sufering and the suffering and death of other people whom the world rallies around, fights for, and supports.  And what the root cause might be. ♿ Accessibility: Shorter 3 minute preview video and audio version in the post below ————————————— #MECFS #SevereMECFSawarenessDay #pwME #spoonie