Thank you for your interest in this study. Please read the participant information below and answer the screening questions, which will enable us to determine your eligibility for the study. If eligible, the researchers will send you the full survey for completion.

You are invited to participate in a study that examines the nature of fatigue, factors that influence fatigue and how fatigue affects functional everyday outcomes. The research is being conducted by Dr Cynthia Honan and Dr Jane O’Brien. Ms Kate Donnelly, Ms Jodie Wise and Miss Eleni Kalimnios will be assisting with the study in partial completion of an Honours  degree within the College of Health and Medicine.

Purpose of the study
The purpose of this study is to investigate the relationship between subjectively experienced fatigue and functional outcomes (e.g., everyday social functioning, social participation, employment, quality of life) in people with chronic fatigue syndrome (CFS) when compared to healthy individuals. Factors that may influence this relationship including sleep, illness severity, social support, diet and lifestyle, and cognitive skills, will also be investigated.

What does my participation involve?
If you wish to take part in this study, you will be asked some initial screening questions (below) aimed at identifying whether you are suitable to participate. If you are deemed suitable, you will be emailed a unique participant number and a weblink to complete the full survey online. The survey will contain a series of questionnaires related to your: (1) general background; (2) CFS symptoms (if you have CFS); (3) diet; (4) alcohol use; (5) symptoms of depression; (6) experience of fatigue; (7) experience of daytime sleepiness; (8) sleep quality; (9) perceived thinking difficulties; (10) social functioning; (11) social support; and (12) quality of life and social participation. It is recommended that completion of the survey in the one sitting, although breaks can be taken when required. It is estimated that the survey will take 40 to 70 minutes to complete. If you feel that you would like to complete the survey over a longer period of time, we can post the survey to you.

We will also ask you for permission to contact a family member or friend (this is optional) to complete a short survey about your social functioning and integration as a result of your illness or condition. A link will be provided at the end of the (full) survey which can be emailed directly to your family or friend for completion.

Benefits
The current research is intended to improve our understanding of the nature of fatigue and the link that fatigue may have with various functional outcomes in CFS. Whilst the benefits of participating in this research may not be of direct benefit to you, your participation will provide us with some invaluable information that will assist other people with CFS, researchers, and clinicians to further understand in particular the types of fatigue-related factors which are most relevant in predicting everyday functioning. Such an understanding is important as it may lead to more effective rehabilitative treatment programs for those who experience difficulties with fatigue. Note that your individual results from the questionnaires will not be available.

Recompense to Participants
There will be no payme
Consent
You are encouraged to discuss your participation with a family member, carer, or doctor prior to consenting to participate in this research. Where possible (or if asked by the researchers), please have a family member or carer present to witness your consent prior to completing the survey. Acknowledgement of the presence of a witness can be provided in the online survey link or by having your witness co-sign the included consent form (if receiving a hard-copy of the survey in the mail).

Voluntary Participation
Participation in this study is entirely voluntary. You do not have to take part in it. If you do take part, you can withdraw at any time without having to give a reason. Whatever your decision, please be assured that it will not affect your relationship with the researchers or any other medical personnel. Only the researchers named above will be aware of your participation or non-participation. We recommend that you have a family member or friend present when agreeing to participate in this study.

Confidentiality
All the information collected from you for the study including all medical history and results will be treated confidentially, and only the researchers named above will have access to it. The results of this study may be presented at a conference or in a scientific publication, but individual participants will not be identifiable.

Further Information
When you have read this information, the researchers will be available to discuss it with you further and answer any questions you may have. If you would like to know more at any stage, please feel free to contact Kate Donnelly on kated@utas.edu.au or Dr Honan on cynthia.honan@utas.edu.au.

How do I find out the results of the study?
Results of the overall study can also be obtained by contacting Dr Honan on 03 6324 3266 or cynthia.honan@utas.edu.au.

Ethics Approval and Complaints
This study has been approved by the Tasmanian Health and Medical Human Research Ethics Committee. If you have concerns or complaints about the conduct of this study should contact the Executive Officer of the HREC (Tasmania) Network on (03) 6226 7479 or email human.ethics@utas.edu.au. The Executive Officer is the person nominated to receive complaints from research participants. You will need to quote H0015630. Any complaint you make will be treated in confidence and investigated.

Who do I contact if I wish to speak to someone about my mental health?
As aforementioned, a number of questions will be asked about psychological functioning and alcohol and other drug use. Whilst it is not anticipated that these questionnaires will cause distress, please do not hesitate to let the researcher know. If you are concerned about your mental health please contact your regular doctor, Lifeline on 13 11 14 or the researchers.
Please answer the following screening questions.

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* 1. Have you been diagnosed with CFS/ME?
(a diagnosis is required for this study)

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* 2. What is your age?
(you must be aged between 18 and 65 years to participate in this study)

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* 3. Are you able to read and speak English?                
(English is required for this study)

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* 4. Do you have a current diagnosis of any psychological disorder?
(Note: most diagnoses are not an exclusion, but please be specific so we can best determine this)


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* 5. Please specify any history of brain injury or other neurological illness (e.g., traumatic brain injury, epilepsy, encephalitis)?

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* 6. Do you have a history of alcohol or illicit drug abuse? 
(At this time we are not including participants with this history)

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* 7. Are you pregnant? 
(At this time we are not including individuals who are pregnant in the study)

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* 8. Please enter your contact details
(these details will allow us to send you the survey link to you or contact you about your participation, please allow 3 days).

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* 9. Please indicate your preference for survey completion.

Thank you for your responses. We will shortly be in contact to notify you of your eligibility. If eligible, we will send you a link to the online survey together with your unique participant number.

Kind regards,
Dr Cynthia Honan
Senior Lecturer and Study Director
School of Medicine
University of Tasmania
Email: cynthia.honan@utas.edu.au
Ph: 03 6324 3266

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