[misc.handicap] LUPUS/DEPRESSION

Chris.Brown@f223.n163.z1.fidonet.org (Chris Brown) (10/09/90)

Index Number: 10975

It was very moving to read of your experience in a psych hospital
ward where you observed that many people showed symptoms of immune
system dysfunction, symptoms siimilar to lupus.

I have worked for the past decade bringing this very fact to the
attention of health officials in canada, and in the Province of
ONtario, especially. The evidence is overwhelming in favour of the
general observation you have made, and the one thing that has kept
me going while dealing with somme of the thick and stupid people
who are put in positions where they have power over our lives is
the virtual certainty that some psych patients, who may be
experiencing extreme horrors, have undiagnosed sensitivities as the
cause, or a significant contributing factor in their illness.

Don't jumpt to conlcusions about all psych patients, though.  Some
of the symptoms you see may be sensitivity reactiois to toxic drugs
psych patients are given, and when you observe sensitivity
symptoms, do not assume all these people have lupus.

But you are right to be horrified at what has been happening, right
to express concern, and right if you want to help do something
about it.

Try to get a copy of the Ashford Report, from Nicholas Ashford at
MIT.  It outlines the state of the art of the argument in the
medical "profession" on this subjetc, and concludes that because
there is confusion, in any case where there is ambiguity
sensitivities should be ruled out first.  There are some very
important doctors in the United States who are heavily invested in
abusive positoins, and their desire to maintain their proessional
credibility is the biggest obnstacle in rescuing these poeple.

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Rusty.Ferguson@p2.f13.n123.z1.fidonet.org (Rusty Ferguson) (10/12/90)

Index Number: 11066

CB>I have worked for the past decade bringing this very fact to
CB>the attention of health officials in canada, and in the

Great, glad to here it.  You moving to Memphis soon, I hope?  >Grin<

CB>sensitivity symptoms, do not assume all these people have
CB>lupus.

No I wouldn't make that assumption, but I found it amazing that these people 
had not been tested.  I only asked a couple of people, three to be exact, 
one was diagnosed.  When the classic lupus type rash is there it is hard to 
not believe it is lupus, but the rash alone does not result in a diagnoses. 
I only play doctor on myself these days, and even that gets me into trouble. 
 >Grin<  Still, it was alarming to find that some of the medical 
professionals knew so little about the disease.

CB>right to express concern, and right if you want to help do
CB>something about it.

I do, but I find it hard.  How can I do something about it?  Hmmm, maybe 
send some Lupus pamphlets to key players?  Any other ideas?  
 

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Chris.Brown@f223.n163.z1.fidonet.org (Chris Brown) (10/13/90)

Index Number: 11098

Sorry, I don't know how to use the editor so I can't directly
respond to quotes, but....

Nadine was right when she suggested keeping a balance.  I find that
has been the hardest part.  I decided NOT to keep a balance when I
decided to fight for increased recognition.  I'm glad I did.  I
think it was necessary for the issue and, more to the point, I was
publicly identified with this issue, and, as a journalist, the
statements authorities were making to the effect that we couldn't
ell when we knew something and when we did not was of critical
importance to several other concerns.

your family is important.  I'm just now pulling myself out of a
full-tilt go to the wall fight...and rebuilding relationships,
making new ones, and so on.  But when friend have killed
themselves, and when you understand the suffering caused by
bigotry, it's hard not to fight...expecially if, at the time, you
have nothing to lose.

Distributing pamphlets is nice, but I have yet to meet a health
professional who is willing to respond to reason.  They tend to
respond better to authority and the law. what has worked in
bringing this issue forward here is using Human Rights laws,
"reasonable accommodation" and "harassment" provisions.  Boycotting
the census brought six cabinet ministers on board.  inventing and
"marketing" a FRESH AIR Brick broght a lof of media attention.
Refusing to pay taxes for three years helped.  (I have a letter
from an aide to the minister for taxes saying "You're crusade is
long and hard.  I sympathise. I refuse to be an inquisitor".  I
haven't been audited, and every cabinet minister's office knows I
haven't paid.

the disabled community hasn't been all that gelpful here....It
seems there's a tendency towards discrimination amongst SOME
physically disabled persons about hidden disabilities, and we have
found it hard to get on the agenda of disabled action groups,
advisory committees, and so on.  But eventually they too will find
us sexy and get on board.

Chemical sensitivities are receiving increased attention with
increased interest in the environment.  Most of our people are
disabled by polluters, (that is to say, sensitive to substances in
pollution).

Some people with disabilities casued by "birth defects" were likely
born of parent(s) whose sensitivities resulted in reproductive
system dysfunction.  So there's reason for all disabled people to
be concerned about this phenomenon, if only to prevent SOME others
from dbeing born with various disabilities.

Another thing to watch out for is the (correct) opinion amongst
doctors that all sensitivities can not be explained by inmune
system dysfunction.  Many sensitivities result from "intolerances"
or innappropriate flora and fauna in the digestive tract.

Some people have auto-immune disabilities as a result of the effect
low level (or high level) exposure to chemicals has had on their
auto-immune function.  Some poeple with diabetes, some
witharthritis, lupus, and so on, experience reduced auto-immune
degeneration if substances they are sensitive to ("barriers") are
removed from their environment and diet.

The woman I live with was diagnosed as epileptic for several years
before a doctor found that she had convulsions in response to
certain foods, sometimes hours after ingesting them.  The whole
thing is complicated by the fact that the person may have symtpoms
affecting one system of the body...such as diabetes, for instance,
which can be auto-immune related, which can be caused by long-term
exposure to chemicals, but this person may sho no other signs of
sensitivities, such as rashes, or IgE reponse....

Recently Canada's Health Minister, Perrin Beatty, stated that in
cases of ambiguity involving psychiatric symptoms, environmental
causes should be ruled out first.  (I don't mean social
enviornment)

What was the name of the doctor who told you more poeple should
know about this stuff?  Perhaps (s)he can help bring the Ashford
Report to the

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Chris.Brown@f223.n163.z1.fidonet.org (Chris Brown) (10/18/90)

Index Number: 11188

I'm not suggesting that there is ONE cause for lupus, and that we
should debate which cause is THE cause.  As you probably know or
suspect, lupus can result from various causes...

The issue I was raising is that central nervous system dysfunction
can be caused by sensitivities, whether immune mediated like
allergy, or not.

Doctors recently came to understand that a lot of diabetes is
auto-immune caused...and can be stopped from progressing by
immunosuppresive medication.  There is compelling evidence that
some per centage of psychiatric illness is caused, or significantly
exacerbated, by immune and non-immune mediated sensitivities.
Several of us are working to rescue those psych patients whose
problems result from UNDIAGNOSED sensitivities.  people working on
the problem include government, medical, and non-government
officials, care-givers, and consumers.  There are, as you say, many
competent and dedicated doctors.  But doctors, like other humans,
tend to respond to authority more than reason.  You may have read
Erich Fromm's book "Fear of Freedom"?  It outlines how people tend
to try to give up their decision making ability and hand it over to
others who seem to have strong views, or more power.  It's a good
book fro modern day North America.

The remafk I made about physically disabled attitudes towards the
invisibly disabled was influenced by comments in this echo about
someone named "Greg".  One imbecile suggested it was possible and
appropriate to separate Greg's "real personality" from behaviour
resulting from brain damage.  The general tone of other people's
remarks, with some exceptions that made me proud, was to dismiss
the person because he was feeling hostile.  The people who took
this position were very embarrassing, and surprisingly
uncharacteristic of comments on this echo in general.

I guess it's okay to fall down in one direction, but not in another.  

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