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ANZMES Survey 2016


1. It is totally voluntary to complete the survey.


2.  Completion of the survey is anonymous and so we will not know who has completed the survey or be able to link a person with their responses.


3. All the responses will be joined together so only group information will be used.


4. The final statistics from the survey will be shared with others.  For example it may be shared with the media via a press release. This information will also be used for lobbying.




We are aware that ME/CFS has a large impact is a variety of areas and so we could have included many areas in this survey, however, we are also aware that completing a long survey would not be possible for many people with ME/CFS and so we have not been able to include all the areas.


1. Do you have ME/CFS
2.  Do you have fibromyalgia
4. What is your gender
6. What age were you when you first became unwell with ME/CFS?
7. What age are you now?
8. Where were you when you became unwell?
9. If you became unwell in New Zealand please indicate the region
11. How long was the period between coming unwell and being diagnosed or coming to the understanding that you had ME/CFS?
12. How were you diagnosed with ME/CFS
13. Did you become unwell after
14. Was the onset of your illness
15. When you first became unwell describe your capacity
16. Thinking back to when you first became unwell approximately how long was your worst period of incapacity
17. When I first became unwell my health could be described as below
Space Cell Very goodGoodAdequatePoorVaried greatly over time
Physical Capability
Mental Clarity
Emotional Stability/Mood
Quality of Sleep
Body Aches and Pains
Personal relationships
19. Please rate how you think the following are important to managing your condition.
Space Cell Very ImportantOf some relevanceNeutral but I am open to considering furtherCompletely IrrelevantI don't know
Pacing and Rest
Managing Stress
Meditation/correct breathing
Pharmaceutical medication
Non Pharmaceutical medication
Counseling or Psychotherapy
20. Do you think you are sensitive to exposure to some or any of the following.
Space Cell I get AnaphylaxisExtremely SensitiveQuite SensitiveNo Sensitivity at allI don't know
Specific foods
Specific Food colourings or additives
Specific Pharmaceutical Medications
Specific Non Pharmaceutical Medications
Specific Solvents and Chemicals
Specific Animals
Specific Herbicides and Pesticides.
21. How would you rate the care you receive from your general practice doctor with respect to how you experience ME/CFS?
22. Are you a member of ANZMES
23. How did you hear about ANZMES
25. If you are a member of ANZMES then rate the services that you directly benefit from listed below
Space Cell Very GoodGoodAdequatePoorI do not use this service
Facebook Page
Advertising of events
ANZMES resources provided to support groups
Do you find ANZMES resources such as info sheets and booklets helpful.
Meeting Place Magazine
Specific requests for Information
Annual Meeting
Learning about currant research
Validation of my health experience
Someone to call if needed
26. If you are a member of ANZMES then rate the importance of services that you may indirectly benefit from.
Space Cell Highly ValuableSome ValueNeutralNot ValuableI don't know
Lobbying Government
Education of GP's Specialists and hospitals
Information given to medical students
Financial support of research
Support of local support groups
Supplying information to the general public
Education in schools
Supply of information resources
27. Why did you become a member of ANZMES
28. Do you find the delivery of information service by ANZMES to be
Space Cell YesNoI don't know
29. How do you find Meeting Place Magazine
Space Cell ExcellentVery GoodAdequatePoorI don't read it
Easy to read
Well presented
Satisfies my interests
31. If ANZMES  had an annual or biannual conference would you attend.
32. Do you currently experience severe incapacity
33. Do you have a Community Services Card
34. Do you need home help or a personal care provider
35. Have you been able to receive home help or personal care
36. Have you been unable to receive home help or personal care even though this service has been referred to you by a doctor. 
37. Please indicate the extent of activities that you are involved with
Space Cell 100%90%80%70%60%50%40%30%20%10%
Home Maker
Primary carer for children
Tertiary study
Paid employment
Self employment
38. Do you feel socially isolated because of your condition
39. In 2016 my ME/CFS or FM condition is best described by the following
42. Do you think that the work of ANZMES benefits the wider community
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