A few more brief notes from the lecture
CF and ME is the same illness.
Patients like to call it ME.
Little is known about it. (especially if like me you never read anything about it………no, no, she really didn’t say that!)
Main symptom debilitating fatigue and some other symptoms like memory problems and PEM.
In 2007 (when St Esther burst onto the scene) people didn’t believe in ME and certainly didn’t believe it happened in children.
No one then knew how to treat it.
Back in 2005 48% of doctors in the Exeter health authority did not know how to diagnosis it.
2011 still a great lack of knowledge.
GPs and doctors in general very judgemental and patients felt abandoned.
Early study showed how common it was.
1% of secondary children missing a day of school a week. (Didn’t say why………….)
She was told it did not exist in primary school children.
She uses the ALSPAC (Avon Longitudinal Study) and the children are now 27.
ME children are too sick to turn up at clinics.
Med students think it just affects white middle class children, but this isn’t so as drug use, poverty increases the risk.
Adversity increases the risk, but such children don’t make it to clinic.
It is equally common in boys and girls in the under 11s but 3 times more common in girls after 13.
2% of children have ME.
1/1000 are housebound.
It is not one illness and there is a need to study genetics.
Treatment doesn’t help one third.
There are three different groups.
What increases risk? Followed by remarks about a new Harvard analysis she is using. Discussed confounding and common effects.
Most prominent risk factor is family adversity
Possible causes: abuse; trauma; anxiety; depression; poor sleep and puberty.
BMI is not a predictor.
BP drops in children with ME.
Life events is the predictor up to the age of 13.
Very important: children who develop ME sleep less before they get it.
Talks about her three trials
CFS has a huge impact on children.
30% have depression and 40% have anxiety.
Parents likely to split up and mums have mood disorders.
They are very likely to use health services before they develop ME.
Mentions just finishing recruiting for Magenta…….it is the largest trial for children and will show the cost effectiveness of CBT.
GET is not harmful to people with ME. Children want GET.
Reduce boom and bust to base line.GET measure only number of steps but activity management records everything.
1/3 of ME children do more rigorous exercise anyway than their fit counterparts.
Mums and kids say activity management is great.
GET has wonderful results.
Screen shown with comments by children so grateful for the effects of GET. Last statement of a child says it means he can be with his friends again. Esther quite overcome with emotion at this point…….such gratitude and the thought of children recovering with her treatment………….brings a lump to the throat.
There is only one complaint by the children: there isn’t enough exercise.
After one year the results are excellent and there is no harm to any child. (well, apart from those she has paralysed)
Photo of poster pops up on the screen. It is the STOPGET poster.
Shocking! Activists trying to stop her trial.
But, I just carry on anyway.
It is just their mistaken views on exercise.
FITNET is a solution to a big problem.
The Lancet published the Utrecht papers in 2011 where 66% got better with CBT.
75% were back at school within six months. (Figures don’t tally???)
Parents want FITNET not activity management. They want the most intensive therapy for the children.
We want to deliver round the UK.
Quote from BMJ flashed up on screen. Dangerous activities in life………….most dangerous being a researcher into ME. (Brave, brave Esther facing all those bedbound patients)
LP Smile.
Esther thought it was a hippy, expensive scam.
Children didn’t want to do it.
But it was successful.
Finished up with ‘I have learnt a lot about trials and a lot about activists’.
Applause from impressed audience.
Any questions??
Oh! David?
Hi Esther……………………………………..