Action for M.E. is a nationwide charity supporting individuals affected by ME/CFS. We are launching a new children’s service and looking for your ideas about what would be most useful for children with M.E., their siblings and Parents. 

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* 1. At the very beginning, (perhaps even before a diagnosis of M.E./CFS), how did first you become aware/suspicious it might be M.E./CFS   
(Tick all that apply)

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* 2. Where did you go first for information and support?

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* 3. Was the information you first received from the above sources Helpful
(Use the Slider below: Left side = not at all helpful, Right side = this information was essential)

1 5
i We adjusted the number you entered based on the slider’s scale.

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* 4. In your own words, how would you describe this early stage, trying to get information and support?

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* 5. Think about what you find useful now, (or would find useful now, if it existed).
Which of the following might be something you'd want to use for information and support?

  Not at all useful Partially Useful Very useful Essential
An annual conference aimed at parents
A local, facilitated support group that meets every 4-6 months
An online forum for parents
Parents who have received training to offer support on the phone, talking about their experience
Literature specifically on being a parent of a child with M.E.
Literature that can be read and understood by a child affected by M.E.
A matching service that pairs you with another parent who has experienced the issue you are facing

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* 6. As a parent, which areas would you like a charity like Action for M.E. to concentrate on improving?

(Please rank these with 1 being the most urgently needed)

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* 7. As you thought about the last question, was anything missing? Is there some other area of support that needs improvement? 

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* 8. How would you prefer to access help from a charity like Action for M.E.

  I would never use this I'd be unlikely to use this  I would consider using this I would like to use this I would LOVE to use this
Over the phone
Video conferencing (like Skype or other web-cam based systems)
An online, text based chatroom
Written materials and leaflets
Emailed questions and answers 
Organised meet-ups

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* 9. Please take a moment. Do you have any other ideas you want the consultation group to think about that would help parents?

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