Little Help for ME sufferers

Little Help for ME sufferers
Linda Crowhurst
Eastern Daily Press June 25th 2008 p. 18

(may be reposted)

All ME sufferers in Britain and around the world will draw hope from
Kevin Short 's momentous victory in court (Norwich ME suffer wins
court ruling EDP June 19th 2008). I am severely affected and my ME
needs go completely unmet in Norfolk.

Luckily, I have a very supportive GP, who knows that my condition is
neurological, but his hands are tied when it comes to referring me to
consultants, because there is not the interest nor the knowledge nor
the understanding or the availability of biomedical clinicians to
treat me. I am left with virtually nothing, no hope and worse, no
biomedical understanding to ease the pain, the paralysis, the numbness,
the digestive, the autonomic and endocrine issues : the fifty plus
physical symptoms that I experience .

The level of sickness in severe ME has been compared to that of an
AIDS sufferer two months before death or a terminally ill cancer
patient and I have been like this for almost fifteen years, while all
that NICE is prepared to recommend is useless "activity management";
without dealing with the underlying disease.

I need proper tests, treatment and advice on specific symptoms and
issues. I want to be able to access services in Norfolk, as any other
person with a chronic illness is able to do.