this compares to US Veterans Administration policies
I'm more optimistic. When Kay Gilderdale's court case was on, the focus was overwhelmingly on the "right to die" issue with the ME as an incidental issue; at the time, a lot of people making comments on newspaper sites said they found it hard to believe that she had ME because she clearly had something serious!
However, Kay is now in a position to talk at length about the severe nature of her daughter's ME and how appallingly she was treated in the NHS and that she believes that this was because medical staff can't cope with severely ill people whose tests keep coming up negative. All three of those points are immensely valuable to us and Kay is an extremely sympathetic figure who is getting acres of coverage on these issues in the sort of human-interest story that is of great interest to everyone.
Anything that helps shift opinion in our favour is a help and if medics read this as well, great. I hope that this will help us.
My health care is in the US Veterans Administration system. I have been sick with ever-increasing symptoms of ME/CFS.
For 20 years , the VA has run "all the tests they can do", and of course I appear to be a healthy person to them. Meanwhile (you know the story), I am terribly ill and each year more progressively so.
They certainly don't want to hear anything about"chronic fatigue syndrome". I had one meeting with the Infectious Diseases Dept. which found nothing. After the Science paper was published and xmrv was in the fore, I asked for another appointment via my managing Dr. and was told that the ID would not grant another appt as there was no new development in my case. Meanwhile I have tested + from WPI.
The policy of the VA seems to be: they want nothing to do with chronic fatigue syndrome or Gulf War illness, or whatever is vaguely defined to them. Anybody unfortunate enough to be as sick as I am (and all the Many Others also are), well ,we are just screwed(so to speak). They will take each individual symptom and send me to that clinic where nothing is ever resolved, but to consider that there is an underlying cause to Everything and it may be a retrovirus? just isn't their way of doing things. My illness does not exist to them.
Meanwhile, I am edging toward dying and this is the truth. It's worse all the time. My healthcare system avoids the subject.
It feels a little bit like what you unfortunate people in the UK are experiencing.
Sorry, I hope this did not hijack the thread. It's just that there are all too many similarities in my health care situation with the sad story that we read about that ended in a tragic way. It is alarming, truthfully.
added: just want to emphasize this post isn't meant to be about me/myself ; rather it's intended to show the widespread devastation caused by government agencies that will not engage this disease.