My First Visit To Our Youth Group by Fiona Jones, our Research Officer

 

On May 15th 2006 I travelled to Prestatyn to visit our youth group meeting, which Margaret runs. I was warmly greeted by both parents and their offspring. Dawn who very kindly lends her home to this event each month, showed me around. After being given refreshment the shout went up, from Margaret of course, to start and I was in one room with the parents and the teens went to their room.

I have to say that I was some what prepared on questions about the latest research, but I am a sufferer of ME not the parent of a child with ME, neither am I a parent so I found their concerns and worries quite eye opening.

I know my parents worry about me and I am forty something, with a career behind me. What it must be like for these parents I was about to find out.

Schooling and access to further education was obviously a major concern for the future social and economic benefit of their kids, and those who have read Les and Jayne Morris’s story [Evening Leader by Caroline Jones Friday 12 June 2006] will see that parents have to fight to get their kids the help they need. It is not the only area parents have to fight for their kids, appropriate health and social care is another mine field they have to traverse. There are helpful doctors, social workers and physiotherapists out there. This is where this meeting for the youth benefits the parents as they share their experiences and knowledge.

We also covered questions on research into blood flow, genetics [Dr Kerr study], and The CDC’s [Center for Disease Control Atlanta USA] epidemiological study highlighting a possible hypothalamus pituitary adrenal axis link. I also explained N.E.T. Neurological Energising Therapy the year long research project I am taking part in at the MS support Centre in Saltney with a number of our other members. This therapy has been used on MS patients for five years to help with stamina and balance, the centre has now been given a years research grant to see if it will help ME patients. Unfortunately at this time only adults are being tested.

Dawn called food and the hungry mob, and I don’t just mean the younger members of this group headed for the kitchen where a wondrous buffet was laid out for all to enjoy. I was able to meet all the kids and touch on our shared problem. I was greatly honoured when they requested that I come to another meeting and sit and talk to them next time, and yes I did succumb to a jam/cream scone and oh jaffa cakes!!

To find out more about my role in the group see my page.