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#MaeveInquest Heartbreaking evidence from Maeve's parents this morning. Clear indications of systemic failures by health/social care bodies leading to tragic consequences. #SevereME + ignorance kills. Indefensible. [Painful echoes of my own experiences both in/out of hospital]

I made a new account for purely Long COVID stuff so that’s not all I post about here. Hopefully I’ll post science again one day… Anyways the handle is dianna haze (Right now it’s mostly puns I posted to keep myself entertained at the beginning of all this until I got too sick

In memory of Maeve Boothby O’Neill. And the countless others who have gone through similar ordeals undocumented. The medical system and society at large cruelly failed you, yet through you (and your family’s) altruism, things are changing for the better. Thank you.

We NEED a Republican Senator to co-sponsor this bill. Without Biparitisan support it is unlikely to pass, especially in the House. Please call your representatives, get your friends family to do the same, exert all the pressure you can. 🙏

People with #MECFS aren't safe at home, in hospitals, at work, or in the media. No safe space since modern medicine began. Many have died needlessly. I'm in palliative care myself. This could have been different for many. Why isn't it? Cowardice. Just fucking cowards everywhere.

If you know someone who - may be suited for this remote job as disability engagement director & - has a good understanding of #LongCovid & #MECFS (or would be interested in learning about this issue), please send them this job posting from the Harris campaign 🗳️

Vote for Kamala/Waltz!!!!!

This will come as no surprise anyone who has been reading this literature for about that past, well, "forever," but there is just so much batshit constantly being written about ME/CFS in so-called "peer-reviewed" journals. It is like whack-a-mole trying to respond to it all.

I’ve had to spend less time on here and more on 🅱️SKY because of the toxicity. My tip is to block these account types: * Far-right ME/LC is a hoax trolls * ME is not real/part of Long COVID and all Long COVID is like AIDS trolls * BPS/brain retraining/FND/psychosomatic trolls

#SevereMEDay Journalist: "I have seen African children suffering from starvation, met people dying of AIDS,patients paralysed from the neck down,others in the last stages of terminal cancer, but I had never seen a living person as desperately ill as Lynn Gilderdale.💔 #MyalgicE

Yes, please, people who aren’t to focused on the research or are new. Being written in a scientific journal does not mean something is true.

Also, some organizations, share about pw mild and moderate ME, And when pwME die. But where are you when people with severe and very severe ME are still alive ? Why don't you share their stories before it's too late for them ?

Impact on Economies: Long COVID affects labor participation and productivity, causing significant financial strain on individuals & economies. We estimate that the annual global economic toll of Long COVID is around $1 trillion or 1% of the global GDP nature.com/articles/s4159…

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.

Any history of Long Covid is incomplete without a thorough discussion of ME/CFS. This erasure is part of the reason we’re simply repeating the history of ME/CFS with Long Covid, just with new people, faster, better funding, and at scale.

My daughter Isla would have been 19 today, she died in May. She had been ill with ME since she was 6, later with POTS and MCAS. She faced disbelief and neglect from many professionals. Things have to change for ME patients #pwME #severeME #MECFS #MEpatient #POTS #MCAS

Well goodbye to any sort of Long COVID or ME funding by the US government in the medium term. This is a disaster for a field in it’s infancy. Long COVID money will dry up by the end of next year… Private donations will be the biggest funder now. Hoping other nations step up.