Today, November 1st 2016, Prof Esther Crawley launched a recruitment campaign in the media for her FITNET-NHS trial. The trial website describes the aim of the study:
The FITNET-NHS study is a randomised controlled trial comparing two treatments for children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) who do not have access to a local specialist CFS/ME service. The study will investigate whether FITNET-NHS (online CBT) is effective in the NHS, and whether it offers value for money compared to Activity Management.
BBC news article by James Gallagher claims Landmark chronic fatigue trial could cure two-thirds:
A therapy that successfully treats two-thirds of children with chronic fatigue syndrome is being trialled for NHS use. The disease affects one in 50 children, leading to mental health problems and missing school.
“If anyone has done a cross-country [run] or a marathon – that is how it feels all the time,” said Jessica, 14.
The trial, on 734 children, will use intensive online therapy sessions to adjust sleeping habits and activity levels. It also uses a form of behavioural therapy to help children with the disease adapt the way they live…
Trials of the scheme in the Netherlands showed 63% of the patients given therapy had no symptoms after six months, whereas just 8% recovered without it.
The scheme offers behavioural therapy sessions to change the way children think of the disease and aims to reduce the time spent sleeping and sometimes cut activity levels.
The approach regularly receives criticism from some activists who argue it treats chronic fatigue syndrome as a disease of the mind.
Prof Crawley said:
“A teenager might say, ‘You are just trying to change my sleep,’ but do you know how much biology you actually change?
“Children who come to my clinical have low cortisol [stress hormone] levels in the morning, that is why they feel so terrible, by changing their sleep, we reverse that.
“The stuff we are doing is not a pill, but it might as well be.”
Who supports the trial?
This trial is supported by AYME (Association of Young People with ME) and Prof Stephen Holgate chair of of the Medical Research Council Translational Research Group and chair of UK CMRC (UK CFS/M.E. Research Collaborative).
WAMES does not support this trial. We do not believe it is a good use of public money. Patient surveys and poor results from the PACE trial raise questions about the effectiveness (and safety) of CBT and GET in adults. The Dutch trial in children with fatigue did not produce better long term results than usual care and it is unclear whether all participants had strictly defined ME.
WAMES recommends caution for young people with ME participating in the ‘intensive activities’ that the FITNET trial requires, as post-exertional exacerbation of symptoms, is the key characteristic of ME.
More stories online:
BBC Radio 4 Today programme: Listen to the catch up of the 1 Nov programme for 30 days
Crawley said she does not consider CFS a psychological illness. If it were, she said, more young patients would be expected to develop low mood or anxiety. But that does not mean psychological therapy will not help, she said.
Science media centre: Testing a ‘controversial’ treatment for CFS/ME in children
University of Bristol: Testing online treatment for chronic fatigue syndrome (CFS/ME)
Care appointments: Webwatch: New online treatment trialled to tackle Chronic Fatigue Syndrome
Hereford & Worcester Radio interview 1 Nov 12016: starting at 1 hr 17 mins, and lasting about 5 minutes.
BBC Victoria Derbyshire programme 1 Nov 2016: starts at 1 hr 10 mins and lasts about 12 minutes.
The Canary blog post: Controversial online therapy to be used in childhood chronic fatigue syndrome trial
news.co.au: Online treatment for chronic fatigue
Boots web MD: New trial will test therapy for CFS in children
Times, 2 Nov 2016: ‘I got ME and thought: ‘This is the end’ This story looks at the experience of Emma Franklin, the FITNET trial, criticism based on the PACE trial and Emma’s decision to opt for immune suppression treatment not CBT & GET.
Times, 2 Nov 2016: Children with chronic fatigue get therapy online