It’s really nice to see this condition actually getting some attention from the press after years of it being belittled or ignored. It’s a shame it took an unnecessary death to get there, though.
Effective-Ad-6460 on
While heartbreaking and awful to read.
The NHS is not to blame … The government is to blame
My family and partner have worked in NHS hospitals for the past 3 decades, they are understaffed, under funded and let down by all levels of the british government.
The politicians are the scumbags that have rinsed social services dry to fill their own pockets and mates bank accounts.
Any and all frustration should be directed at them.
ChinaLabVirus2019 on
yet they’re doing nothing. alright pointing it out but what are they doing about it?
won’t get far on this rock if the ill are left behind.
Salt-Arm4977 on
It’s so surreal to see coverage of severe ME in the media, I’m so grateful to Maeve’s parents for working to raise awareness in a time of such unbearable loss.
I’ve had ME for ten years, and am ‘lucky’ to be mild-moderate. That means I can still work about 15-20 hours a week (with accommodations) as long as I don’t have a social life, have hobbies, make my own meals, shower or take care of my home. When I first got ill, I was sure that doctors would make me better. When they were puzzled, I was sure that they would pursue every avenue until they found something that would at least allow me to live a ‘normal’ sedentary life, even if I couldn’t go back to dancing. Unfortunately, when it comes to ME, a shrug is a final answer from the vast majority of doctors.
My younger brother developed ME two years after I did. He did get ‘specialist’ care, which at the time was graded exercise therapy. It made him worse and worse the more he pushed through, encouraged by his medical team who told him that he just needed to keep going. He died in 2019. ME was not put on his death certificate – it almost never is. We are missing so many stories and I’m grateful that finally people are talking about this illness. Hopefully it will translate to better research funding, and better education for medical professionals. It will be too late for my brother, for Maeve and for who knows how many other people with ME who won’t survive to see the way they were treated become a shocking chapter in medical history books.
novarosa_ on
I know several people who had ‘ME’ and all of them turned out to have autoimmune diseases that weren’t checked for, some of them for decades. Astonishes me that the NHS can get away with using it as some sort of diagnosis to replace actually spending money on testing. Not saying ME isn’t real of course, only that it also gets treated as a kind of rubbish bin diagnosis where you can put people to languish when you don’t want to spend money investigating them.
5 Comments
It’s really nice to see this condition actually getting some attention from the press after years of it being belittled or ignored. It’s a shame it took an unnecessary death to get there, though.
While heartbreaking and awful to read.
The NHS is not to blame … The government is to blame
My family and partner have worked in NHS hospitals for the past 3 decades, they are understaffed, under funded and let down by all levels of the british government.
The politicians are the scumbags that have rinsed social services dry to fill their own pockets and mates bank accounts.
Any and all frustration should be directed at them.
yet they’re doing nothing. alright pointing it out but what are they doing about it?
won’t get far on this rock if the ill are left behind.
It’s so surreal to see coverage of severe ME in the media, I’m so grateful to Maeve’s parents for working to raise awareness in a time of such unbearable loss.
I’ve had ME for ten years, and am ‘lucky’ to be mild-moderate. That means I can still work about 15-20 hours a week (with accommodations) as long as I don’t have a social life, have hobbies, make my own meals, shower or take care of my home. When I first got ill, I was sure that doctors would make me better. When they were puzzled, I was sure that they would pursue every avenue until they found something that would at least allow me to live a ‘normal’ sedentary life, even if I couldn’t go back to dancing. Unfortunately, when it comes to ME, a shrug is a final answer from the vast majority of doctors.
My younger brother developed ME two years after I did. He did get ‘specialist’ care, which at the time was graded exercise therapy. It made him worse and worse the more he pushed through, encouraged by his medical team who told him that he just needed to keep going. He died in 2019. ME was not put on his death certificate – it almost never is. We are missing so many stories and I’m grateful that finally people are talking about this illness. Hopefully it will translate to better research funding, and better education for medical professionals. It will be too late for my brother, for Maeve and for who knows how many other people with ME who won’t survive to see the way they were treated become a shocking chapter in medical history books.
I know several people who had ‘ME’ and all of them turned out to have autoimmune diseases that weren’t checked for, some of them for decades. Astonishes me that the NHS can get away with using it as some sort of diagnosis to replace actually spending money on testing. Not saying ME isn’t real of course, only that it also gets treated as a kind of rubbish bin diagnosis where you can put people to languish when you don’t want to spend money investigating them.