Closing Date 19 November 2017

We are sending this questionnaire to you because you are a child/young person with M.E./CFS.

We are a small user group of children, young people and young adults who have been asked to find out what you would like or need from the charity Action for M.E. as it develops and grows its Children’s Services.

You can be honest and tell us as much or as little as you want to.


Ok now you can get started. There is a place at the end for you to have your say on anything you like, so you can skip straight to that if you don’t have the energy to do the rest.

Question Title

* 1. Firstly please tell us a little about yourself – this is anonymous and won’t be used for anything other than statistics.

Question Title

* 2. Do you use Action for M.E.'s online children’s Forum?

Question Title

* 3. Would you like more interaction with other children & young people with M.E./CFS?

Question Title

* 4. If you think you might want more interaction with children & young people with M.E./CFS, please tick any of the following you would like to try

Question Title

* 5. Do you have any ideas for social activities/services we could provide for children that might have nothing to do with M.E./CFS? One member has suggested a Minecraft group.

Question Title

* 6. Onto your condition

Did you and your family need help in the past finding specialist health services?

Question Title

* 7. Would you like more help getting specialist support for M.E./CFS?

Question Title

* 8. If you answered yes to the last question, how would you like to access this support?

Question Title

* 9. Which of the following would be useful to help you manage your symptoms?

Question Title

* 10. Would you use any of these to get help with your education?

  I would never want this I'd be unlikely to want this I would consider using this I would like to use this I would LOVE to use this
Advice sheets for schools/teachers on what learning support could help
Options/concessions available for exams
Someone to talk to the school to explain the condition
Quiet area for resting within the school
Explaining what rights/options are available
Information about preparing for University

Question Title

* 11. What about help for your friends, which of these might help?

  I would never want this I'd be unlikely to want this I would consider using this I would like to use this I would LOVE to use this
Advice sheets for written to share with friends
More child-specific website information
Reading personal accounts/diaries of other people who’ve had ME
Having someone from Action for ME talk to them about your symptoms/illness
Information leaflets explaining the condition targeted at children and young people

Question Title

* 12. Can you tell us about anything else you need, that you don't think is available? This space is for you to share anything you would like to tell the Consultation Group.

T