Welcome to...
IMPORTANT
NEW ME/CFS QUESTIONNAIRE
An important new ME/CFS
symptom questionnaire has been developed by Ricky Buchanan, author of the
very well known "Letter
To Normals"l which has been published in CFS/ME newsletters and books
all over the world. Ricky herself has had severe CFS for over a decade.
Why a new questionnaire
at all? After years of contact with the CFS/ME community Ricky has noticed
a small percentage of people with CFS/ME have very severe symptoms. Much worse
than the "usual" case of CFS/ME would expect. It is these people Ricky would
like to study - the people who are bedridden for years and years and years,
who cannot leave the house, who need wheelchairs to get from one room to another,
and so forth.
This questionnaire, known
as the "CFS/ME Severe Symptoms Questionnaire", aims to find out what symptoms
these people commonly have that people with less severe CFS don't have.
Things like epilepsy, paralysis, and so on. To find out what is different
about people with very severe CFS, Ricky needa to study ALL of the CFS/ME
community though.
So even if your CFS is
mild, please help by completing this questionnaire anyway! It is divided into
six small sections. You can complete them on different days, just whenever
you have a little energy. And please, if you are not well enough to fill out
the questionnaire yourself, get somebody close to you to help you.
The questionnaire will
be available to complete until the 28th of February, 2004. Please go along
to: http://tertius.net.au/foothold/questionnaire/
The CFS Sofa is the home
page for all the CFS information at my site. Information I've gathered ranges
from the personal, such as my own CFS story, to the official definition of CFS
from the Centres for Disease Control, and links to relevant web pages. I hope
there's something here of use to everyone.
The Road Back
Since the end of 2000 I've been feeling a lot better and am able to do more
each day. I wrote this page to describe how this happened and what it feels
like. Updated 14.12.01.
"CFS?", I hear you say?
What is CFS? The accepted definition for research purposes from the CDC.
My life with CFS
The story of my experience of this illness, which has been a part of my life
for eleven years now. Updated 13.01.02.
Will-power and Chronic Illness
Many PWCs wonder if it's their personality or attitude that is responsible for
their illness. This article contains my thoughts on an issue that many people
with an incurable chronic illness confront.
Have you tried a magnetic mattress? Miracle cures and
CFS.
Well-intentioned friends and family often offer new treatments to PWCs as 'cures'
for their illness. In this article I talk about why this can be so trying and
why PWCs can't throw themselves into every potential therapy.
Snake Oil Antidote
Does a treatment you've been offered strike you as spurious, strange or typical
of a 'miracle cure'? In this article I describe tactics and sentiments common
to 'snake oil merchants': check to see if you recognise them.
Maintaining Hope
Healthy people sometimes imagine that those with a chronic illness have given
up hope, and if we only 'think positive' our problems will be over. This article
explains why hope is so important and yet isn't a sure-fire cure.
Illness and Identity
Many young people with CFS struggle to find their own identity, and this article
talks about the difficulty of finding a personality separate from CFS and explaining
our situation to others.
Everyday Poisons?
Some people with Multiple Chemical Sensitivities see their symptoms as proof
that common chemicals are harming everybody. But is this a fair assumption,
and is there another conclusion that can be drawn from their experiences?
CFS-related
links
Web pages belonging to government agencies, CFS organisations, advocacy efforts,
or containing valuable information pertaining to CFS.
CFS Support groups on the Internet
The internet, e-mail groups, the usenet and IRC are a valuable source of support
for PWCs all over the world - particularly those who are house-bound. This page
has details of many different support groups.
The 1999 Sydney CFS Conference Patient's Day
An article about the speeches at, and information provided by, this event organised
by the Alison Hunter Memorial Foundation.
The 1998 Sydney CFS Conference Patient's Day
My report of this important event, held by the Alison
Hunter Memorial Foundation.
If you have comments,
suggestions, links, or would just like to say hello sign my guestbook!
To
Everything in my life requires an
explanation , my blog.
Lovely green
sofa supplied to me by Eric Henes.
Flashing lights from Ann-S-Thesia:
A Gallery of Digital Delights, Ann-S-Thetics and Ann-i-mation. Free stuff for
your page!