'First hand account of symptoms' Database

        I was wondering if anybody out there in internet land with the right
skills and attitudes had thought of initiating a website to collect
first hand accounts of  symptoms and experiences of illnesses, in
order to shed light on the more intractible and rare conditions, or
come to think of it the whole nature of illnesses themselves.
        In my personal life I have been generally interested in information
that falls through the cracks, the kind of stuff that gets ignored,
forgotten about or dismissed as trivial, irrelevant or bogus. This
intellectual pursuit came into sharp and intensely personal focus when
I became ill about 6 years ago and I found myself flung upon the mercy
of the UK medical profession. My local GP had right from the start
treated my condition as basically a fungal irritation of the skin. I
was on the strongest drug for fungal conditions, but when I came off
this medicine my condition deteriorated so fast I was rushed of to
hospital and then into the domain of the consultant who eventually
'diagnosed' my condition and refused any fungal connection whatsoever,
despite my GP having witnessed such.
    Anyway I don't wish to go on about that. I have heard plenty of
similar tales and the reason why I've mentioned all this, is that in
terms of our official medical histories, my experiences and others
like it have dissappeared of the map, and that this is happening every
day all across the world. I find the enormity of that thought truly
daunting. What an appalling loss of knowledge!  All those personal
experiences and symptoms if collated and analysed could have shown
unexpected patterns and connections have just been lost and only maybe
haphazardly found through personal internet searches,
        I find the whole doctor / patient, doctor / consultant relationship
deeply unsatisfying from the point of view of a good exchange of
information.  First of all there is a basic imbalanced power
relationship going on here (which becomes more acute the higher you go
up the medical hierarchy) and the doctor still won't like the patient
challenging his diagnosis Then on a practical level GP's are rushed
off their feet and are looking for the ABC's of the illness you might
have and when they've got that fixed in their head, other info and
symptoms they really don't have time to deal with get lumped into the
convenient dumping ground known as 'Psychological symptoms', remember
the denial of M.E. as a 'real condition' by the medical profession. To
be fair to the GP, he is not a researcher and even if a GP is aware of
some extra information, as in my case, he maybe wary of challenging
the authority of his medical superiors.
        The key result of this poor doctor / patient relationship is that
you, the patient, can become wary of telling the doctor things he
doesn't want to hear. So a lot of people faced with this state of
affairs stop the open flow of information and look elsewhere and all
those experiences of alternative cures or failures just dissappears
from your official medical history and so does all the statistical
analysis of it that might have shed light on it too has gone as well.
        I decided to stress the symptoms aspect of the database idea in the
news group posting because in the rarer illnesses a lot of diagnoses
are very vague in the understanding of why they appear and what the
disease actually is. So I thought if we minimalised the role of the
medical labels and focused in on all the symptoms reported by people
of their illnesses, no matter how subtle or insignificant they might
be, it might enable us to see a clearer picture of what is going on.
        However I have also come to believe that when we fall ill we all do
that in our unique ways. All our experiences before, during and after,
all become important to the undestanding of the illness. And although
we are each unique there are many similaries between us, and our own
stories if told properly, might lead us to the clearest understanding
into the whole nature of our illness. So a Symptoms / Biography
Database would be a more correct title.
        Apart from shedding light on the less uuderstood illnesses a
database of symptoms combined with a biography might act as a guide
when faced with the multitude of treatments out there. Anybody who has
found themselves outside the cozy security of official medical
practice can find it hard to tell what is bogus or genuine or what is
appropriate treatment or not. And we all know personally of, or have
heard stories of one person's triumphant success story with one
particular alternative treatment only to find that when we try it we
blatantly fail. And after trying a good selection of these alternative
therapies with all the financial costs and then hopes being dashed
it's not hard to get disillusioned and give up. We begin to feel like
failures and those success stories only make us feel more so.
        I imagine this Symptoms / Biography database would be one of those
self evolving sites I've heard of driven by a carefully thought out
questionnaire. Am I just dreaming here getting carried away on a
flight of fancy or is this a good idea ?

Clive from the UK
http://www.geocities.com/clivemcgee/index.html

To see my own unique resolving of my own illness go to
http://www.geocities.com/clivemcgee/dowsing.html and I hope that might
not put anybody off what I hope is a good idea. I honestly don't
believe that nobody else has thought of this and if they have, please
let me know for I would be glad to recount my experiences to it. Maybe
there are practical problems I haven't forseen.