I can't help but think of Sophia Mirza. She died in London in 2005, and she was the first person to have CFS noted as the cause of death. I read the website devoted to her, and I can't get it out of my mind. UK authorities broke down her door and took her to a psychiatric hospital where she died, without treatment, of renal failure.
Wildaisy, I hope you won't mind my clarifying that Sophia was sectioned in July 2003. It is my understanding from the website that Sophia was released back home, several weeks later, in 2003, following a tribunal.
She died at home in 2005 - not in hospital or on a psychiatric ward.
http://www.sophiaandme.org.uk/sophia & m.e. her story.html
Also there had been an earlier case in the UK where "CFS" had been given on a death certificate as a contributory cause of death - the late Annabel Senior, wife of Richard Senior. Richard has since run support groups and emailing lists for carers of people with ME and I remember having some brief contact with him following the news of his wife's death. I believe that Annabel also had cardiac problems recorded as a contributory factor.
In 2006, two letters were published in New Scientist [16 June 2006], following an article on the death of Sophia Mirza - one from Richard Senior and one from Sue Waddle, who at the time was a Trustee of Invest in ME:
Not, sadly, the first
29 July 2006 by Richard Senior, Glastonbury, Somerset, UK
I hope you won't feel I am being insensitive in clarifying these two points.