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ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
Disclaimer
ME/CFS South Australia Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
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New ME/CFS questionnaire
November 20, 2003
An
important new ME/CFS symptom questionnaire has been developed by
Ricky Buchanan (right), author of the very well known “Letter
To Normals” which has been published in ME/CFS newsletters and
books all over the world. Ricky herself has had severe CFS for over
a decade.
Ricky explains:
Why a new questionnaire at all? After years of contact with the CFS/ME community I have 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 I 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, I need to study ALL of the CFS/ME community though. So even if your CFS is mild, please help us by completing this questionnaire anyway!
I know that these questionnaires take precious energy to complete, so this one 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. Also, the questionnaire will be available to complete until February 28, 2004.
Please go along to tertius.net.au/foothold/questionnaire/ whenever you next can. Any questions please send to rb@tertius.net.au and I will answer as soon as possible. Oh, and you don’t have to have a doctor’s diagnosis to participate! You just have to fit the critiria for CFS, which are available at the website for you to check.
So if you think you have CFS, be it mild or severe, please have a go! I will be writing up the results when I have enough of them and submitting my research findings to various CFS newsletters and journals around the world. As far as I know, this is the first research into very severe ME/CFS symptoms that has been done.
Another thing that’s special about this questionnaire is I plan to publish the raw data (with no names, of course – your data will be completely anonymous) in a form that other researchers can easily import into a databases or spreadsheet and use.
Please be a part of this important research! Wander along to the questionnaire and fill in the sections as slowly or fast as you are able to.
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Registered Charity 3104
Email:
sacfs@sacfs.asn.au
Mailing address:
PO Box 322,
Modbury North,
South Australia 5092
Phone:
1300 128 339
Office Hours:
Monday - Friday,
10am - 4pm
(phone)