It is heartbreaking and frightening to read these stories and see the extent to which health and social care professionals are ignorant of the basic hallmarks of ME/Long COVID. Although it may be difficult to believe how invisibly debilitating symptoms can be, particularly in the cases of younger, previously very active individuals, this very phenomenon has itself now been well documented. There is no reasonable explanation for the repeated and long term implementation of unhelpful therapies or dismissal of needs. Thanks to the #There for ME team for continuing to highlight this problem. Andy Burnham, this is one area where you can make meaningful and immediate change - listen to these voices and act now if you are truly committed to improving quality of life in the UK.
I personally know two friends with severe ME who, unable to access suitable care, took their own lives. Their families either didn’t care or understand or weren’t in a position to help. The final desperate solution was sought. Neither of them were depressed just couldn’t go on living as they were. A third friend starved to death as her partner had a breakdown and left and she was unable to call for help.
This is stark and beyond distressing. I’m guessing it’s the tip of the iceberg.
There’s something so cruel about a system requiring someone with limited capacity to repeatedly explain, document and defend their limitations and then having that process itself contribute to further deterioration. I have been through it myself even with simple things. I was so severe my step-mom had to do all the my talking for me in another room but they would insist they must speak to me for a minute and I would crash just saying my name and birth date but there was now way around it.
This aligns so closely with my experience. Constantly dealing with absolute misunderstanding of the condition. Constantly being asked to do things that will certainly make me worse, or provided care which does things I don't need/are harmful but not the things I do need. Thank goodness for the NDIS in Australia, which (after 2 years of fighting) provided me with the care that I need, at the level that I need. I know that I'm lucky, that too many others have not been successful in gaining access.
It is heartbreaking and frightening to read these stories and see the extent to which health and social care professionals are ignorant of the basic hallmarks of ME/Long COVID. Although it may be difficult to believe how invisibly debilitating symptoms can be, particularly in the cases of younger, previously very active individuals, this very phenomenon has itself now been well documented. There is no reasonable explanation for the repeated and long term implementation of unhelpful therapies or dismissal of needs. Thanks to the #There for ME team for continuing to highlight this problem. Andy Burnham, this is one area where you can make meaningful and immediate change - listen to these voices and act now if you are truly committed to improving quality of life in the UK.
Trigger warning:
I personally know two friends with severe ME who, unable to access suitable care, took their own lives. Their families either didn’t care or understand or weren’t in a position to help. The final desperate solution was sought. Neither of them were depressed just couldn’t go on living as they were. A third friend starved to death as her partner had a breakdown and left and she was unable to call for help.
This is stark and beyond distressing. I’m guessing it’s the tip of the iceberg.
There’s something so cruel about a system requiring someone with limited capacity to repeatedly explain, document and defend their limitations and then having that process itself contribute to further deterioration. I have been through it myself even with simple things. I was so severe my step-mom had to do all the my talking for me in another room but they would insist they must speak to me for a minute and I would crash just saying my name and birth date but there was now way around it.
This aligns so closely with my experience. Constantly dealing with absolute misunderstanding of the condition. Constantly being asked to do things that will certainly make me worse, or provided care which does things I don't need/are harmful but not the things I do need. Thank goodness for the NDIS in Australia, which (after 2 years of fighting) provided me with the care that I need, at the level that I need. I know that I'm lucky, that too many others have not been successful in gaining access.