Survey to assess the practical needs of those with ME/CFS/FM

What practical help is needed for those who have ME/CFS/FM

The Rest Assured Respite Charitable Trust is a recently formed organisation whose vision is to provide a respite care facility for, but not limited to, the suffers of ME/CFS and Fibromyalgia.

The facility will provide specialized short and longer term residential care for suffers, allowing them access to a place of sanctuary & rest with staff who understand the true nature of the illness. The trust will strive to provide professional, non-judgemental care in an environment best suited to bring about improvement to the lives of suffers, their carers & families.

To allow us to build up a fuller picture we are looking at the needs those with these illness.

Each survey will use the same set of questions at the beginning to obtain relevant information such as the conditions represented, age of participant, location etc.

By participating in this survey you will be providing:

1. A valuable resource that can be used to determine/assess the needs of those with ME/CFS/FM in the community.

2. Information which can be used to show if these needs are relevant to few or many.

3. NZ based information on these issues.

4. A point of reference when we make funding applications.

Question Title

* 1. Have you been diagnosed by a medical professional with any of the following?
Are you completing this survey for yourself or another?
Please tick all that apply.

ME/CFS

Fibromyalgia

Other condition/s

I am completing this survey for myself

I am completing this survey as a carer on behalf of someone else

If you ticked other conditions what condition/s are they?
Please write below.

Question Title

* 2. How many years have you had ME/CFS or Fibromyalgia?
Please tick one.

Diagnosed in the last 6 months

Diagnosed in the last year

Diagnosed in the last 5 years

Diagnosed in the last 10 years

Diagnosed in the last 20 years

Diagnosed more than 20 years ago

Question Title

* 3. How would you best rate and describe the severity of your illness?
0% being totally bedbound/severely disabled - to 100% which is being completely well?
Please tick one (this link will give you an ability scale which will help you determine your level more accurately ME CFS Ability_Scale)

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Please use the comment box to explain more fully if you would like to.

Question Title

* 4. What are your most common symptoms? Tick all that apply

Post exertional malaise

Muscle and/or joint pain

Extreme fatigue

Problems thinking, remembering or concentrating

Sleep disturbances

Feeling dizzy or sick

Flu-like symptoms

Headaches

Others: please specify below

Question Title

* 5. What are your most pressing needs?
Please tick whatever applies and use text box for additional answers.

I'm able to care for myself so no needs at present.

I need to find a health professional that understands the illness I have.

I have found a health professional but am unable to access due to cost.

I have found a health professional but I'm not well enough to get to appointments.

I can't afford to pay prescription costs.

Transport to appointments is difficult.

I need help with grocery shopping as I'm not well enough to shop.

The cost of buying groceries is hard to manage.

I lack transport to shops.

I need help preparing a meal.

I need help with doing laundry.

I need help with vacuuming.

I need help with gardening.

I need help with looking after my children.

I live with a partner/spouse.

I live alone.

I am a solo parent.

I live in Auckland

I live in Bay of Plenty

I live in Waikato

I live in another region of NZ - Please write where in NZ in the comments box below, so we know which region the need is represented in.

Please comment in the box below. Tell us any needs you have which we have not listed and answer these questions just to give us a fuller picture:
Q1 who provides your help?
Spouse/partner, parent/s, child/ren, sibling/s, friends/s, privately funded carer/helper DHB funded carer.
Q2 which part of NZ do you live in?

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* 6. Please tick your age range.

Under 20 years

20 - 30 years

31-40 years

41 - 50 years

51 - 64 years

65+ years

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* 7. One need we think we have identified is the need for meals. One idea is to make simple, nutritious, low cost soups and stews for the freezer. These soups and stews would come ready to freeze, or frozen and would be thaw, heat and eat. They will be prepared in a commercial kitchen by a skilled chef.
To gauge the need for this would you mind answering the questions below.

Do you need/would you use, ready made, simple, nutritious, low cost soups and stews?

Would you buy low cost, tasty, nutritious soups?

Would you buy low cost, tasty, nutritious stews?

Would you eat GF food?

Would you eat Dairy Free free food?

Would you eat FODMAP friendly food?

Would you eat Vegan?

Would you eat Vegetarian?

Do you avoid nightshade family foods?

Do you require food made to a special diet other than above?

Would you eat "everything in it" food?

Like frozen options.

Like fresh options.

I would like organically grown food.

Happy with just good quality fresh ingredients.

I would use them because I have ME/CFS/FM and find meal preparation hard.

I would use them because I am unwell with another illness.

I would order them for elderly parents.

I would buy them to gift to those who need them.

I would use them because I am working.

No need for them, just handy as a back up in the freezer.

Need family size meals.

Need single serve size meals.

How many meals a week do you think you would require if this was something which would benefit you?
Please write the number of meals below and any other comments.

Question Title

* 8. If you did use meals could you afford to pay for them?

Yes

If yes, could you afford $5 - $8 a meal for generous sized single serves. If for a family how many servings would you need and what price range could you afford?

Question Title

* 9. If you did need meals could you arrange pick up from a central collection point?

Yes I could collect meals.

I would need meals delivered but couldnt afford to pay a delivery fee.

I would need delivery. I would be happy to pay a small delivery fee.

I could collect sometimes but would need delivery option at others.

Comment on the question above.

Question Title

* 10.
1. How long did you have symptoms of ME/CFS/FM before you were diagnosed?
2. How many doctors/specialists did you visit before you got a diagnosis?
Do you have any extra comments on the questions above or suggestions for other services/assistance/help you need?

Question Title

* 1. Have you been diagnosed by a medical professional with any of the following? Are you completing this survey for yourself or another? Please tick all that apply.

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* 2. How many years have you had ME/CFS or Fibromyalgia? Please tick one.

Question Title

* 3. How would you best rate and describe the severity of your illness? 0% being totally bedbound/severely disabled - to 100% which is being completely well? Please tick one (this link will give you an ability scale which will help you determine your level more accurately ME CFS Ability_Scale)

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* 4. What are your most common symptoms? Tick all that apply

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* 5. What are your most pressing needs? Please tick whatever applies and use text box for additional answers.

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* 6. Please tick your age range.

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* 8. If you did use meals could you afford to pay for them?

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* 9. If you did need meals could you arrange pick up from a central collection point?

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* 10. 1. How long did you have symptoms of ME/CFS/FM before you were diagnosed? 2. How many doctors/specialists did you visit before you got a diagnosis? Do you have any extra comments on the questions above or suggestions for other services/assistance/help you need?

* 1. Have you been diagnosed by a medical professional with any of the following?
Are you completing this survey for yourself or another?
Please tick all that apply.

* 2. How many years have you had ME/CFS or Fibromyalgia?
Please tick one.

* 3. How would you best rate and describe the severity of your illness?
0% being totally bedbound/severely disabled - to 100% which is being completely well?
Please tick one (this link will give you an ability scale which will help you determine your level more accurately ME CFS Ability_Scale)

* 5. What are your most pressing needs?
Please tick whatever applies and use text box for additional answers.

* 10.
1. How long did you have symptoms of ME/CFS/FM before you were diagnosed?
2. How many doctors/specialists did you visit before you got a diagnosis?
Do you have any extra comments on the questions above or suggestions for other services/assistance/help you need?