As part of our campaigning we need to press the local and regional ICBs to make provision for people with severe ME. In my region I've managed to get the medical director of the ICB to have a discussion about provision for severe ME. My fear is that he will reply that a lack of money means that they can't do anything. We really have to impress on them that not providing services for people with severe ME is a denial of their human rights. I increasingly at meetings cite the UN report from April which condemns the UK for the systematic violations of disabled people's human rights. At some point this may need legal action to redress these human rights violations.
As you pointed out, I also consider the treatment of, and lack of provision for, people with severe and very severe ME a human rights issue. I wonder if joining forces with Amnesty International could help the ME community?
Thank you so much for this post. It's desperately tragic. I would like to contact you about re-use of this article in an ME advocacy publication. Would you be willing to email me? Stooibrown@yahoo.com
I cried when I read this article, which is, for someone with M.E. among other co-morbidities, very ironic (too exhausting to cry as much as I want/need to).
I feel deeply for James, and to some extent I can empathise, as for me the cognitive side of M.E. is by far the worst. What a wonderful mother he has. My heart goes out to them both.
As part of our campaigning we need to press the local and regional ICBs to make provision for people with severe ME. In my region I've managed to get the medical director of the ICB to have a discussion about provision for severe ME. My fear is that he will reply that a lack of money means that they can't do anything. We really have to impress on them that not providing services for people with severe ME is a denial of their human rights. I increasingly at meetings cite the UN report from April which condemns the UK for the systematic violations of disabled people's human rights. At some point this may need legal action to redress these human rights violations.
As you pointed out, I also consider the treatment of, and lack of provision for, people with severe and very severe ME a human rights issue. I wonder if joining forces with Amnesty International could help the ME community?
Thank you so much for this post. It's desperately tragic. I would like to contact you about re-use of this article in an ME advocacy publication. Would you be willing to email me? Stooibrown@yahoo.com
Thank you.
Stoo
I cried when I read this article, which is, for someone with M.E. among other co-morbidities, very ironic (too exhausting to cry as much as I want/need to).
I feel deeply for James, and to some extent I can empathise, as for me the cognitive side of M.E. is by far the worst. What a wonderful mother he has. My heart goes out to them both.