INTERNATIONAL SURVEY ON CFS/ME/CFIDS: Tell Your Story about CFS/ME/CFIDS for New Book!

Short description of the project & questionnaire

 
Hello!

This questionnaire aims to gather information and experiences from people with Chronic Fatigue Syndrome (CFS), CFIDS and Myalgic Ecephalomyelitis (ME) in view of the forthcoming publication of a book dealing with these subjects. Given the scarcity of data on CFS/CFIDS/ME, your contribution will be of great value to further the understanding of a condition that is all too often overlooked by the medical community.

The objectives of this international survey are to raise the public’s awareness of CFS/CFIDS/ME but also that of local, national and international institutions, as well as urging the medical community to carry out further research on the matter. A higher visibility is often the first step towards a greater understanding and better treatment.

I would thus be extremely grateful if you could please fill in this questionnaire, at your own time and pace. You can also request an email copy of this questionnaire in Word format at the following address: herman.salton@exeter.oxon.org There is no need to indicate your full name in your questionnaire—your first name or even, if you prefer, a fictitious name is sufficient.

As I believe that CFS/CFIDS/ME require a global approach in terms of information and research, the questionnaire is also available in French, Spanish and Italian, and will be sent to CFS/CFIDS/ME associations all over the world with the aim of gathering the widest possible sample of experiences from those affected by CFS/CFIDS/ME.

The questionnaire and resulting book focus on the experience of the CFS/CFIDS/ME patient (e.g. communication issues, impact on the patient’s life, etc) rather than on the clinical aspects of his or her condition. With the aim of obtaining the widest possible range of experiences, I invite you to forward this questionnaire to other people affected by CFS/CFIDS/ME or their family and/or carers.

This questionnaire is available both in a Word and PDF format, the first being suitable for typing, while the second can be printed off, filled in by hand and returned to me by email or post. The questionnaire comprises many questions, but any can be omitted, should you wish so or should you be too tired to proceed. However, please bear in mind that the more specific and detailed your answers, the greater will be your contribution to making CFS/CFIDS/ME known and understood.

Thank you very much for your time and effort to fill in this questionnaire. Should you have any question and/or suggestion concerning the questionnaire or book, please do not hesitate to contact me.

With my very best wishes,
Dr Herman Salton
LLB/LLM (Italy), MPhil (Oxford), PhD (Auckland)
Email: herman.salton@exeter.oxon.org

IMPORTANT: Please make sure you finish the whole questionnaire, which is made up of ten questions. Many thanks!
1. How old are you, what do you do and for how long have you been suffering from CFS/CFIDS/ME? Which country/city do you live in? And which first name, real or fictitious, do you wish to be referred with in the book?
2. Have you ever received a diagnosis of CFS/CFIDS/ME? If so, when and how did the diagnosis come about? Do you have memory or concentration difficulties? If so, how do they affect you?
3. What kind of symptoms do you suffer from exactly? What has changed in your life as a result of suffering from CFS/CFIDS/ME? Did you have to suspend and/or reduce your work/study activities?
4. How would you describe the attitude of doctors towards CFS/CFIDS/ME? And of your General Practitioner/Family Doctor?
5. Have you experienced any difficulty in explaining the symptoms of CFS/CFIDS/ME to your family, friends and employers? How about your Family Doctor and/or other doctors? Have you experienced any difficulty in explaining the symptoms of CFS/CFIDS/ME to your family, friends and employers? How about your Family Doctor and/or other doctors?
6. What kinds of treatment have you tried? Have any of them been effective? What do you think are the causes of CFS/CFIDS/ME? Forget for a moment what you have read about it: what does your instinct tell you about the causes?
7. Do you agree with the following definition of CFS/CFIDS/ME: “A kind of permanent flu”? Why?
8. Do you remember the day when your CFS/CFIDS/ME first began, or was it a more gradual onset?
9. How would you define the seriousness of your CFS/CFIDS/ME: mild, moderate, extreme? Why? Have you experienced difficulty with/at work following the onset of CFS/CFIDS/ME? Which ones?
10. Have you ever suffered from depression? If so, before or after the onset of CFS/CFIDS/ME? Do you experience pain? If so, which kind? And what is, in your opinion, the single most problematic aspect of CFS/CFIDS/ME? Are you hoping to heal from it? Please provide here any further information you believe is important, or any suggestion for the questionnaire and/or book. Also, as it might be useful for us to follow up/clarify some of your answers, are you willing to provide your email address? Thanks very much for your help!
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