era@ncar.ucar.edu (Ed Arnold) (03/16/91)
Index Number: 14059 Am trying to help a friend whose spouse has apparently developed CFIDS, find info about this disorder. I've already called NORD - their report takes about a month to receive. In the meantime, would like to hear from anyone who has references to organizations and/or knowledgeable medical persons working in this area, or from individuals who have the syndrome and can offer advice. Thanks in advance, -- Ed Arnold * NCAR * POB 3000, Boulder, CO 80307-3000 * 303-497-1253(voice) 303-497-1137(fax) * era@ncar.ucar.edu [128.117.64.4] * era@ncario.BITNET era@ncar.UUCP * Edward.Arnold@f809.n104.z1.FIDONET.ORG
Nadine.Thomas@p1.f7.n300.z1.fidonet.org (Nadine Thomas) (04/16/91)
Index Number: 14951
Hello!
The best thing a person can do that has CFS is to rest, rest, rest and more
rest. The main thing with CFS is the fatigue and the body must be honored when
it is tired like that. The family needs to take on much of the chores and the
person with CFS, when feeling a bit better, needs to NOT overdo - not try to
do everything in a couple of hours that could not be done for days.
Time must be taken in the middle of the day for a nap (maybe more then one)
and nutritious meals are a must. If they own a VCR comedy movies and the likes
are great morale boosters. It can take weeks to months and even up to a year
or more to go into remission with it - so lots of patience is needed and lots
of love for the person with it.
There are many shortcuts to be learned by that person - like making only one
trip to the kitchen for things instead of two (using a tray or a rolling cart
or hands, arms and pockets) etc.
If that person has a computer being on echo's like this is wonderful to pass
time and to make friends and not feel so lonely.
Nadine
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!300!7.1!Nadine.Thomas
Internet: Nadine.Thomas@p1.f7.n300.z1.fidonet.orgChris.Brown@f113.n163.z1.fidonet.org (Chris Brown) (04/16/91)
Index Number: 14954
the illnesses generally referred to as chronic fatigue may result from a
variety of causes...Health and Welfare Canada has linked them to immune
system problems and Dr. John Davies (613 957 0318) could send you a copy
of an american article on that subject. More popular in Canada is the
theory that chronic fatigue is a result of a latent strain of polio
virus, called M-E...which someone else can spell out for you, it's
something like myalgic encephalitis. The ME self help group in Ottawa is
available at (613) 789-MESH. The leading expert in Canada is Dr. Byron
Hyde and his associate Dr. Jane, who have started the Nightengale
Foundation to help persons with this problem. As with other poorly
understood problems, there is a lot of unprofessional and acrimonious
debate in the medical community. Try to dodge it, and, in particular,
try to dodge those with the attitude that the problem is all in the mind.
As a friend of mine so often says...Medicine is the only "science" in
which the "professionals" state "I don't know what I'm doing therefore i
know what I'm doing", which is to say, I don't know what's wrong with you
so you're crazy. Being in a group which hasexerienced this I have
learned a healthy disrespect for doctors in general, and I've learned how
abusive societal attitudes are towards those labelled as mentally ill.
we live in a spiritually dysfunctinal society.
All the best!
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!163!113!Chris.Brown
Internet: Chris.Brown@f113.n163.z1.fidonet.orgRon.Rothenberg@f460.n101.z1.fidonet.org (Ron Rothenberg) (04/16/91)
Index Number: 14978 >CFIDS, find info about this disorder. I've already called NORD - >their report takes about a month to receive. In the meantime, >would like to hear from anyone who has references to organizations >and/or knowledgeable medical persons working in this area, or from >individuals who have the syndrome and can offer advice. Hi Ed, The longest standing group in this area is ANZMES, Inc., P.O. Box 35 429, Auckland, 10, New Zealand. They publish a quarterly called MEETING PLACE. There is an American CFIDS group, too. They're somewhere in the Pacific Northwest. -rsr- ... Nothing is more fatal to health than an overcare of it. - B. Franklin -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!101!460!Ron.Rothenberg Internet: Ron.Rothenberg@f460.n101.z1.fidonet.org