I need to clarify something.
I am not an advocate of assisted suicide or euthanasia for people with ME/CFS.
No of course I wouldn't condemn anyone for it. Yes of course I've wondered about it from time to time. It's just that:
when someone with ME takes this path, it's because we have been unjustly denied adequate medical care, nursing care and research into this problem. What pathetic amounts of research money there are have been wrongly and unfairly allocated to psychiatrists and research psychologists who put together a bizarre mix of conjecture and research they claim to be evidence based but which is flawed from the get-go. It ain't exactly hard science that they're producing, it's just packaged well.
honeyfumblings, in answer to a comment from Michael Sharpe, one of the UK's most successful CFS researchers (of the psychiatric/therapeutic approach that I have just complained about) has this to say:
Your school of thought has reportedly managed to aquire the entire £11m allocated by the government to help those of us with this condition, leaving internationally groundbreaking biological research by people like Dr Spence, Dr Gow and Dr Kerr to exist on charity alone; work that will undoubtedly result in a definitive diagnostic for ME in the next few years should they get a funding stream, leaving you the option only of a nighttime flit to a new group of unsuspecting suffers, whose symptoms are currently "medically unexplained" and therefore somatic. These are the very real effects on the reported quarter of a million people with ME/CFS in the UK that your plasticine models of psychologically self-perpetuating illness create. In many many quotes, you and your colleagues continue to actively discourage any investigation of physical abnormalities:
“In most cases of chronic fatigue, few laboratory investigations are necessary." - Occup Med 1997(47)
"In clinical practice, no additional tests, including laboratory tests and neuro-imaging studies, can be recommended." - Ann Int Med 1992(121)
Honey wrote that two years ago, it's more relevant than ever and her entire blog is well worth a read.
~~~~~
When someone with ME can't cope with the disease any more, we should be angry that they have been hurt so much, denied so much. Things could be different, things should be different. This is not an end where we can honestly say that all was done that could be done. This is an end a person is driven to when everything has been denied. It is the end result of injustice.
When any of our number feel compelled to take this path, those of us who aren't cut down from grief should be furious on behalf of those that are.
No of course I wouldn't condemn anyone for it. Yes of course I've wondered about it from time to time. It's just that:
when someone with ME takes this path, it's because we have been unjustly denied adequate medical care, nursing care and research into this problem. What pathetic amounts of research money there are have been wrongly and unfairly allocated to psychiatrists and research psychologists who put together a bizarre mix of conjecture and research they claim to be evidence based but which is flawed from the get-go. It ain't exactly hard science that they're producing, it's just packaged well.
honeyfumblings, in answer to a comment from Michael Sharpe, one of the UK's most successful CFS researchers (of the psychiatric/therapeutic approach that I have just complained about) has this to say:
Your school of thought has reportedly managed to aquire the entire £11m allocated by the government to help those of us with this condition, leaving internationally groundbreaking biological research by people like Dr Spence, Dr Gow and Dr Kerr to exist on charity alone; work that will undoubtedly result in a definitive diagnostic for ME in the next few years should they get a funding stream, leaving you the option only of a nighttime flit to a new group of unsuspecting suffers, whose symptoms are currently "medically unexplained" and therefore somatic. These are the very real effects on the reported quarter of a million people with ME/CFS in the UK that your plasticine models of psychologically self-perpetuating illness create. In many many quotes, you and your colleagues continue to actively discourage any investigation of physical abnormalities:
“In most cases of chronic fatigue, few laboratory investigations are necessary." - Occup Med 1997(47)
"In clinical practice, no additional tests, including laboratory tests and neuro-imaging studies, can be recommended." - Ann Int Med 1992(121)
Honey wrote that two years ago, it's more relevant than ever and her entire blog is well worth a read.
~~~~~
When someone with ME can't cope with the disease any more, we should be angry that they have been hurt so much, denied so much. Things could be different, things should be different. This is not an end where we can honestly say that all was done that could be done. This is an end a person is driven to when everything has been denied. It is the end result of injustice.
When any of our number feel compelled to take this path, those of us who aren't cut down from grief should be furious on behalf of those that are.