Chris.Brown@f223.n163.z1.fidonet.org (Chris Brown) (12/05/90)
Index Number: 12201
Good to hear from you, Aaron. There is discussion about Chronic
fatigue Syndrome, but Health and Welfare in Ottawa has recognized
it as a legitimate disease. Sometime in the future we can expect
the decrepit ealth system in the U.S. to catch up...sometime after
doctors there stop bickering and start having a more productive
discussion about poorly understood illnesses. A friend of mine who
has multiple sensitivities found that he, like several others in
our self-help group for people with sensitivities, has an
over-reacting immune system partly because he has chronic fatigue
syndrome...which seems to be related to a particular kind of polio
virus that many people have...some of them after having polio
without being aware of having had polio, their case was so mild.
He also seems to have immune problems due to defective kidnesy not
cleaning out his system properly. (If someone tells you chronic
fatigue results from the Epstein Barr virus, they are apparently
mistaken...there doesn't seem to be a correlation between having
that virus and having chronic fatigue. People here call the
illness ME, intitials for the polio virus Canadian specialists
think is the usual cause. Beware of people with quick single
answers for these illnesses...there seem to be a cluster of illness
involving a variety of poorly understood physiologies, and a lot of
people making grand claims without substantiation about the
physiology. The main fight i've been involved in centres around
how we deal with people with these disabling problems in the
meantime, and promoting the rescue of those with chronic
disabilities and illnesses whose problems may be caused or
significantly exacerbated by sensitivities, whatever the specific
physiology involved. It's a slow process to get doctors to admit
there might be something they should learn about that they don't
already know. (not all doctors, of course, but reaching that
critical mass where it's possible to put an end to abuse of members
of this disabled gorup by doctors has only recently been achieved
inCanada, and it's still over the horizon in the U.S. Britain
recognized the problem years ago...but maybe that's because doctors
there don't work on the profit system.)
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!163!223!Chris.Brown
Internet: Chris.Brown@f223.n163.z1.fidonet.orgAaron.Feldman@f204.n260.z1.fidonet.org (Aaron Feldman) (12/05/90)
Index Number: 12225
Actually that was quite a news tip you gave to me. I have never heard
anything like that mentioned here in the states, viz a relationship to
the polio virus and chronic fatigue. Yes that do clump it with EB virus
but I don't believ it is taken very seriously except by a few maverick
physicans and of course by the people that have it. DO they mention MS
being related? I know I am just speculating. There is a person here I
met with MS who was told that she had such atypical symptoms even for MS
that she must be malingering and yes she was sent of in haste to a
psychiatrist. I guess that why I am still afraid to complian about
anything if the symptoms don't fit MS your given another label. Perhaps
the hardest point is how do you live with these invisible-disabilites?
Thanks for your med news pls keep me posted. Shalom, Aaron
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!260!204!Aaron.Feldman
Internet: Aaron.Feldman@f204.n260.z1.fidonet.orgChris.Brown@f113.n163.z1.fidonet.org (Chris Brown) (12/07/90)
Index Number: 12411
In Canada CFS is thought to be cause by a certain polio virus and, as a
result, the illness is called M-E, after the virus. It's a kind of polio
many people apparently get and never know they had polio. (It's not as
ssevere as other strains).
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!163!113!Chris.Brown
Internet: Chris.Brown@f113.n163.z1.fidonet.orgChris.Brown@f113.n163.z1.fidonet.org (Chris Brown) (12/07/90)
Index Number: 12412
The doctor who is most active in canada on this issue is a guy named
Byron Hyde, of Ottawa. You could write him at 121 Iona St., Ottawa,
Ontario, Canada, K1Y 3M1. his patients have started a
self-help/consumers organization (It is care-giver dominated) called the
Nightengale Foundation. You might write the foundation care of Dr. Hyde.
He is really not keen at all on the E-B explaination, which has been
severely discounted in the United states by a number of researchers. it
seems there's little co-relation between EB and CFS.
(By the way, there are many mebers of our self-help group who had MS
symptoms which were relieved when they avoided substances they were
apparently sensitive to. Of course, MS may be several illnesses with
various causes.)
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!163!113!Chris.Brown
Internet: Chris.Brown@f113.n163.z1.fidonet.org34AEJ7D@CMUVM.BITNET (Bill Gorman) (12/08/90)
Index Number: 12418 Chris: Thanks for the informative post on chronic fatigue syndrome. I have suffered with this problem for YEARS - made MUCH worse (apparently) by a terrific allergy to mold. So, of course, I work in a damp basement full of mold. It took us YEARS to get the Cheeses here to do ANYTHING about the mold problem (several of us were effected by it) and then it was a minimalist effort. I have NEVER been able to get a doctor here in the USA to give me anything better than the old "Gee, we tested your blood and you're not anemic. Maybe it's stress!" song and dance. W. K. (Bill) Gorman
Chris.Brown@f113.n163.z1.fidonet.org (Chris Brown) (12/14/90)
Index Number: 12473
I'm sorry if I gave you the impression that I would not credit science
with any achievements. Science has brought many benefits. But, for
instance, you have to recognize that most of the improvements to health
have come from improved sanitation, living conditions, and diet, and not
from medical science, as doctors would have us believe. Lifestyle and
enviroment play a more important role in health, and although I would
agree that science has an important role to play in these areas, it is
not as important as social justice, equality, or compassion. Ask any
midwife, any activist, or any social worker broadminded enough to
acknowledge the importance of structuralism.
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!163!113!Chris.Brown
Internet: Chris.Brown@f113.n163.z1.fidonet.org