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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

3. Do you have another condition that is similar or related to ME/CFS or Fibromyalgia?

4. What is your gender

Male
Female
Other - Write In Please enter an 'other' value for this selection.

5. What is your ethnicity

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?

New Zealand
Out of New Zealand

9. If you became unwell in New Zealand please indicate the region

Row 1

10. If you became unwell overseas please indicate the region or country

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

Sudden
Gradual

15. When you first became unwell describe your capacity

Very severely Incapacitated, required constant care
Very unwell, could look after myself but not do my normal activities
Poor health but able to do 50% of my normal activities
Poor health most of the time but could do most things I used to do
Adverse health was more an inconvenience than incapacity

16. What is your current living situation?

I live by myself without assistance
I live alone with assistance
I live in a flat with others
I live with a partner or spouse
I live with family
I live in accommodation that is supported
Other

17. Do you take supplements for your ME/CFS? if yes please describe

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

Not really
Seems to have little knowledge
Seems to have little knowledge but interested to learn
Has some knowledge and reads up on the subject
Has good knowledge

20. Are you a member of ANZMES?

21. How did you hear about ANZMES?

22. If you are not a member of ANZMES what is your reason for not joining?

23. If you are a member of ANZMES then rate the services that you directly benefit from listed below

Space Cell	Very Good	Good	Adequate	Poor	I do not use this service
Website	Website: Very Good	Website: Good	Website: Adequate	Website: Poor	Website: I do not use this service
Facebook Page	Facebook Page: Very Good	Facebook Page: Good	Facebook Page: Adequate	Facebook Page: Poor	Facebook Page: I do not use this service
Advertising of events	Advertising of events: Very Good	Advertising of events: Good	Advertising of events: Adequate	Advertising of events: Poor	Advertising of events: I do not use this service
ANZMES resources provided to support groups	ANZMES resources provided to support groups: Very Good	ANZMES resources provided to support groups: Good	ANZMES resources provided to support groups: Adequate	ANZMES resources provided to support groups: Poor	ANZMES resources provided to support groups: I do not use this service
Do you find ANZMES resources such as info sheets and booklets helpful	Do you find ANZMES resources such as info sheets and booklets helpful: Very Good	Do you find ANZMES resources such as info sheets and booklets helpful: Good	Do you find ANZMES resources such as info sheets and booklets helpful: Adequate	Do you find ANZMES resources such as info sheets and booklets helpful: Poor	Do you find ANZMES resources such as info sheets and booklets helpful: I do not use this service
Meeting Place Magazine	Meeting Place Magazine: Very Good	Meeting Place Magazine: Good	Meeting Place Magazine: Adequate	Meeting Place Magazine: Poor	Meeting Place Magazine: I do not use this service
Specific requests for Information	Specific requests for Information: Very Good	Specific requests for Information: Good	Specific requests for Information: Adequate	Specific requests for Information: Poor	Specific requests for Information: I do not use this service
Annual Meeting	Annual Meeting: Very Good	Annual Meeting: Good	Annual Meeting: Adequate	Annual Meeting: Poor	Annual Meeting: I do not use this service
Learning about current research	Learning about current research: Very Good	Learning about current research: Good	Learning about current research: Adequate	Learning about current research: Poor	Learning about current research: I do not use this service
Validation of my health experience	Validation of my health experience: Very Good	Validation of my health experience: Good	Validation of my health experience: Adequate	Validation of my health experience: Poor	Validation of my health experience: I do not use this service
Someone to call if needed	Someone to call if needed: Very Good	Someone to call if needed: Good	Someone to call if needed: Adequate	Someone to call if needed: Poor	Someone to call if needed: I do not use this service

24. If you are a member of ANZMES then rate the importance of services that you may indirectly benefit from

Space Cell	Highly Valuable	Some Value	Neutral	Not Valuable	I don't know
Lobbying Government	Lobbying Government: Highly Valuable	Lobbying Government: Some Value	Lobbying Government: Neutral	Lobbying Government: Not Valuable	Lobbying Government: I don't know
Education of GP's Specialists and hospitals	Education of GP's Specialists and hospitals: Highly Valuable	Education of GP's Specialists and hospitals: Some Value	Education of GP's Specialists and hospitals: Neutral	Education of GP's Specialists and hospitals: Not Valuable	Education of GP's Specialists and hospitals: I don't know
Information given to medical students	Information given to medical students: Highly Valuable	Information given to medical students: Some Value	Information given to medical students: Neutral	Information given to medical students: Not Valuable	Information given to medical students: I don't know
Financial support of research	Financial support of research: Highly Valuable	Financial support of research: Some Value	Financial support of research: Neutral	Financial support of research: Not Valuable	Financial support of research: I don't know
Support of local support groups	Support of local support groups: Highly Valuable	Support of local support groups: Some Value	Support of local support groups: Neutral	Support of local support groups: Not Valuable	Support of local support groups: I don't know
Supplying information to the general public	Supplying information to the general public: Highly Valuable	Supplying information to the general public: Some Value	Supplying information to the general public: Neutral	Supplying information to the general public: Not Valuable	Supplying information to the general public: I don't know
Education in schools	Education in schools: Highly Valuable	Education in schools: Some Value	Education in schools: Neutral	Education in schools: Not Valuable	Education in schools: I don't know
Supply of information resources	Supply of information resources: Highly Valuable	Supply of information resources: Some Value	Supply of information resources: Neutral	Supply of information resources: Not Valuable	Supply of information resources: I don't know

25. Why did you become a member of ANZMES?

To get information on ME/CFS or Fibromyalgia
To participate in advocacy
To find a support group
To stay up to date with research developments
All of the above
Other - Write In Please enter an 'other' value for this selection.

26. Do you find the delivery of information service by ANZMES to be

Space Cell	Yes	No	I don't know
Accessible	Accessible : Yes	Accessible : No	Accessible : I don't know
Prompt	Prompt: Yes	Prompt: No	Prompt: I don't know
Comprehensive	Comprehensive: Yes	Comprehensive: No	Comprehensive: I don't know
Useful	Useful: Yes	Useful: No	Useful: I don't know

27. How do you find the Meeting Place Magazine

Space Cell	Excellent	Very Good	Adequate	Poor	I don't read it
Informative	Informative: Excellent	Informative: Very Good	Informative: Adequate	Informative: Poor	Informative: I don't read it
Easy to read	Easy to read: Excellent	Easy to read: Very Good	Easy to read: Adequate	Easy to read: Poor	Easy to read: I don't read it
Well presented	Well presented : Excellent	Well presented : Very Good	Well presented : Adequate	Well presented : Poor	Well presented : I don't read it
Satisfies my interests	Satisfies my interests: Excellent	Satisfies my interests: Very Good	Satisfies my interests: Adequate	Satisfies my interests: Poor	Satisfies my interests: I don't read it

28. Add any other comments about Meeting Place

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?

Yes
No
Yes, but not to my satisfaction
Not applicable

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?

Yes
No
Not applicable

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

Severe, I am very incapacitated
I am regularly unwell and cannot maintain employment/school or do many things I once was able to do
I can work/go to school and do some normal activities but my condition is a constant burden. I have many ongoing symptoms that I learn to live with
I can work/go to school and do many normal activities but I have some symptoms that I learn to live with
I have good health but I accept that there are things I cannot do and I stay well so long as I manage myself carefully
I am back to good health but there are only one or two things that I have to carefully manage
I am back to 100% good health

38. In what way does the work of ANZMES benefit you?

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?

43. If you answered Yes to question 42, please explain how Covid-19 has changed your life?