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ANZMES Survey 2020

ANZMES Survey 2020


1. It is totally voluntary to complete the survey.


2.  Completion of the survey is anonymous, 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 in 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. What is your current living situation?
18. How would you rate the care you receive from your general practice doctor with respect to how you experience ME/CFS?
19. Do you believe your Doctor understands ME/CFS
20. Are you a member of ANZMES?
21. How did you hear about ANZMES?
23. 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 current research
Validation of my health experience
Someone to call if needed
24. 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
25. Why did you become a member of ANZMES?
26. Do you find the delivery of information service by ANZMES to be
Space Cell YesNoI don't know
27. How do you find the Meeting Place Magazine
Space Cell ExcellentVery GoodAdequatePoorI don't read it
Easy to read
Well presented
Satisfies my interests
29. Do you currently experience severe incapacity?
30. Do you have a Community Services Card?
31. Do you need home help or a personal care provider?
32. Have you been able to receive home help or a personal care provider?
33. Have you been unable to receive home help or a personal care provider even though this service has been referred to you by a doctor?
34. Do you feel socially isolated because of your condition?
35. Are you in a paid position?  
36. Do you receive a benefit from Work and Income?
37. In 2020 my ME/CFS or FM condition is best described by the following
40. Do you think that the work of ANZMES benefits the wider community
41. Do you receive a disability allowance?
42. Have you found that Covid-19 changed your life in anyway?