Search found 21 matches

Search found 21 matches
by onlyme2013
Sat Aug 17, 2013 2:26 pm
Forum: activity management in children
Topic: GET program in young child
Replies: 12
Views: 11400

Re: GET program in young child

Thank you MiazuIME. I read a very good document yesterday call '10 points on Education of children with ME' (or along those lines anyway) and I think I'll also bring that with me when I see the school and consultant. The problem I also have is that the consultant is talking directly to the school bu...
by onlyme2013
Sat Aug 17, 2013 12:41 am
Forum: activity management in children
Topic: GET program in young child
Replies: 12
Views: 11400

Re: GET program in young child

Dr Grayson, Would I be correct in saying that I can choose to stop the suggested GET treatment plan - as there is no proof it works and I see evidence that it is making him worse - and that I should still be able to access other support services for my son such as home tuition and, for example, phys...
by onlyme2013
Sat Aug 17, 2013 12:20 am
Forum: paediatric medical
Topic: Does my child have CFS
Replies: 15
Views: 8740

Re: Does my child have CFS

Dr Grayson, as it was suggested that I contact the TYMES Trust it would be helpful to me if you would expand on which of their recommendations you do not agree with?
I also asked for links to studies on effectiveness/outcomes of GET for children and would be grateful if you would provide some.
by onlyme2013
Fri Aug 16, 2013 4:49 pm
Forum: activity management in children
Topic: GET program in young child
Replies: 12
Views: 11400

Re: GET program in young child

Hello, thanks for the reply, much appreciated. One thing confusing me about the expert's answers is the many references to "if you're crashing you need to investigate what else is going on" but surely the 'what else' is that you have ME and GET doesn't actually do anything about it? I'd st...
by onlyme2013
Fri Aug 16, 2013 9:52 am
Forum: activity management in children
Topic: Cognitive impairment
Replies: 8
Views: 5565

Re: Cognitive impairment

Dear CFS.ME Mum, we are having exactly the same problems. My son said that when he concentrates for too long "it's like my brain is on fire". We know when a relapse is likely as his symptoms return or get worse, eg joint pains when he's done too much exercise (or is it activity!?), headach...
by onlyme2013
Fri Aug 16, 2013 8:56 am
Forum: activity management in children
Topic: GET program in young child
Replies: 12
Views: 11400

Re: GET program in young child

I appreciate your reply but surely the emphasis should be on helping my son to recover from what is a physical illness rather than what keeps a school happy? The choice seems to be to either continue on a path that has serious consequences for his health or stop and let him recover. The talk of acti...
by onlyme2013
Fri Aug 16, 2013 8:04 am
Forum: activity management in children
Topic: GET program in young child
Replies: 12
Views: 11400

Re: GET program in young child

Thanks ME Mum. I had a good look on the TYMES Trust website last night and it helped to clarify things for me. I will speak to them today hopefully. Their literature on education and why not to push children with ME made sense to me, and it mirrors exactly what is happening to us, so I think they mi...
by onlyme2013
Thu Aug 15, 2013 11:53 pm
Forum: paediatric medical
Topic: Activity management
Replies: 15
Views: 10340

Re: Activity management

I am referring to the GET program - not activity management - that. Is being prescribed. This includes school attendance - with a constant push to increase - and no support informing the school of it being a fluctuating illness etc. There is no acknowledgement of a need to stabilise health and only ...
by onlyme2013
Thu Aug 15, 2013 8:14 pm
Forum: activity management in children
Topic: GET program in young child
Replies: 12
Views: 11400

GET program in young child

Hello, Just incase my questions get missed in the bustle of the other sections I thought I would repeat it here, in the correct place. To recap: young son, ill for many years, diagnosis ME. Relapses constantly after a few weeks of GET. Enforced rest period follows as too ill to do anything else. The...
by onlyme2013
Thu Aug 15, 2013 4:10 pm
Forum: adult medical
Topic: Cognition and Personality Change
Replies: 6
Views: 2233

Re: Cognition and Personality Change

I agree that these symptoms are not unusual. I have spoken to other parents (of children with ME) and they report, like us, similar symptoms in their children. And again, I wonder how GET alone can be treating these symptoms? The post-exertional fatigue my son experiences makes all these symptoms wo...
Search found 21 matches