New here!

Hi everyone!

My name is Louise, I'm 22 and have been ill for about 7 years now but we're still searching for a diagnosis. My doctors went through a long phase of considering ME/CFS but it looks as though we're now considering a unique mutation which the genome project will hopefully find. When ME/CFS was our working theory I did a lot of research about the illness itself (and young people with long term illnesses in general) and knew that if I could get to university and complete a dissertation I wanted to go further with it. Long story short I made it to University and am here in Edinburgh searching for participants to take part in an interview (in person or via video call) this month.

My project looks at the lived experiences of transition from paediatric to adult health services so I am looking for 16-30 year olds in the UK who have some experience of both children and adult services. Two groups involved in policy and transition health in Edinburgh are interested in the results of my study so this could make a real difference in how chronically ill young people are cared for in our health service!

If anyone is at all interested, or knows anyone else who might be, I would really love to talk to you!

Thanks for reading!

6 Replies

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  • Sorry out of age range.

  • Hi Louise, My daughter fits your description I will pass this on to her. It would be a video interview. Can I ask have you contributed to the Genome project yourself? If so which centre did you use? I know about the project but our local centre is concentrating on cancer.

  • Hi! Thank you for passing the post on to your daughter, I really appreciate it. I will send a private message with more information and contact details.

    I am a participant in the 100000 genomes project myself yes, through the Greater Manchester Genomics Centre - my healthcare team is spread throughout the UK but one of my Consultants had spaces available for mystery patients and got me in. Sorry to hear your local centre is just focusing on cancer at the moment, hopefully as the project continues more will be covered.

    Thanks again!

  • Hi, i am Callipet's daughter and i would be happy to help you with your research. I don't log on that often as i am struggling a bit at the moment, but i will do my best to reply to you!

  • Hi jenjen93, I'm sorry to hear you are having a tough time at the moment I hope it passes soon but thank you very much for getting in touch! I have sent you and your mum a private message with the details of the study and my contact details.

  • Hello. I have a woman who has ME and her son has ADHD and is 16. He was under Child Services but now he is 16 they don't want to do anything with him as he ought to be in Adult Services but they don't want him as they say that Child Services need to step up and provide for him... This is supposed to be Transition not abandonment... Too old for one and too young for the other. He has problems at school and is self harming and he can't get to appointments as there is no transport where he lives in the countryside, just the school bus. He needs support to travel to appointments as he gets lost or distracted and ends up somewhere else. He even went missing at school as he's forgotten he had an exam that day and went into hiding, so missed the chance to sit the exam after months of work. Needs dental work done but cannot travel to the hospital alone as it means catching buses and changing buses and needs someone with him in the appointment. Mother had her car taken back when she went onto lower PIP - even though she is much worse that she was when she was assessed for DLA (indefinitely). This is in Wales by the way. Any use to you? All the best.

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