Functionality and Lifestyle of ME/CFS Sufferers - Research Project by Amy Hill

Hello, my name is Amy Hill and I am currently completing my SACE Research Project.
I am focusing on Myalgic Encephalomyelitis (ME/CFS), in particular how it impacts the functionality and lifestyle of a sufferer.
The information will be collated, analysed and placed into a folio. After the data is used for its intended purpose, I will permanently dispose of it.
I will not be recording names or  personal details in your responses (ie. Family members, doctors etc.)
You are not obliged to answer all the questions, so you may skip some if you deem it necessary.

Please be as specific as possible with your answers. (Generally <50 words)
This survey is designed to take less than 10 minutes.
It is only for people clinically diagnosed with ME/CFS. You may have FM as well, but not FM only.

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* 1. How long did it take for a confirmed diagnosis of ME/CFS?

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* 2. How long have you had ME/CFS?

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* 3. Do you find that sleep (in general) helps you recover from physical/mental exertion? Why/Why not?

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* 4. Excluding the night, how long must you sleep to ‘recover’? ie. Return to your ‘normal’ level of functionality.

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* 5. What sort of support/network is available to you? (check all that apply)

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* 6. Would you agree that the support you receive from your family and friends improves/maintains your everyday functionality?
If ‘yes’ or ‘sometimes’, how? If ‘no’, why?

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* 7. Would you agree that you feel excluded or marginalised due to ME/CFS? If ‘yes’ or ‘sometimes’, why?

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* 8. Please describe your personal experience of ME/CFS in the context of everyday functions/activities in daily living? (less than 100 words necessary)
eg.  Cognitions, sleep, work, family, social life, personal care (don’t participate in certain activities)

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* 9. With reference to the David Bell Disability Scale, which percentile do you believe you match? 

**Please be aware that this scale is non-linear and focusses on a comparison to a ‘normal’ and ‘healthy’ person who works a paid job.

From: The Doctor’s Guide to Chronic Fatigue Syndrome by David Bell
2004. ME/CFS Guidelines For General Practitioners. 1st ed. [PDF] Adelaide, South Australia, p.13.
Available at:
https://www.sacfs.asn.au/download/guidelines.pdf
http://www.investinme.org/Documents/PDFdocuments/c6a_mecfsguidelines.pdf

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