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. -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!163!223!Chris.Brown Internet: Chris.Brown@f223.n163.z1.fidonet.org
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 -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!163!223!Chris.Brown Internet: Chris.Brown@f223.n163.z1.fidonet.org
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. -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!163!223!Chris.Brown Internet: Chris.Brown@f223.n163.z1.fidonet.org