I am unsure what the abnormalities are in your son's blood tests are as I would expect that blood tests should be normal for a diagnosis of CFS/ME. Access to school and peer group are vitally important for a child's development and not just to keep schools happy. There will be some children who are ...

Cognitive impairment as you describe is a common symptom and has been described as "brain fog".It is important that teachers and tutors are aware of this.It is something which improves as symptoms settle. Older children sitting exams are entitled to concessions including access to rest bre...

I think it is really tricky in practice to stick to the allocated red time especially for an 8 year old. It sounds like you have a sensible approach and if your daughter's symptoms are stabilising after a period of 2 weeks at a certain level I would look to increase by 10% Sleep pattern is important...

My understanding is that active relaxation is different to the rest breaks and refers to "green" activity on the activity diaries. This includes meditation and deep breathing activities.The information sheet on the nhrd website contains some helpful information http://www.rnhrd.nhs.uk/uplo...

I am glad to hear that your daughter has managed to stay positive despite having to cope with so much. You mention POTS, to make a formal diagnosis there needs to be a change between the lying and standing heart rate of more than 30 beats per minute and or a standing heart rate of greater than 120. ...

In this case of course it is important that there is support for the physical symptoms and I didn't mean to in any way to down play these, however for any young person who has had such longstanding physical symptoms of any kind I would anticipate joint working with my psychology colleagues in order ...

I think there is definite confusion with the terminology. I tend to consider GET as a specific exercise programme that is overseen by physios eg walking programme which is steadily increased . Activity management looks at all everyday activities including school work/computer time/seeing friends asw...

I think it may be helpful to seek a further opinion. The data about prognosis I quote comes from the longitudinal studies from the Bath and Bristol service were 96% of children and young people were found to make a full or good recovery. I note that there has been previous recommendations to consult...

I am aware that a lot has been written about the HPV vaccine and CFS/ME however certainly the general advice based on information from the medicine and health care products regulation agency (MHRA) is that they have not found any link between the vaccine and development of CFS/ME. The usual advice a...

I would want to know what you mean by activity and whether when you talk about GET are you looking at a specific exercise programme or are you talking about day time activities including school work/going to school etc. which can be described as activity management.
Caroline Grayson