Portfolio Practice Exercise

Article link: https://www.theguardian.com/society/2016/nov/01/young-people-mechronic-fatigue-syndrome-treatment-trial-success-netherlands

Young people to get ME treatment in trial after success in Netherlands

Hundreds of children and young people are to get treatment for chronic fatigue syndrome for
the first time, to see whether methods that have proved highly successful in the Netherlands
can be adopted by the NHS.
Up to 2% of young people are affected by CFS, also known as myalgic encephalopathy
(ME). But few get any treatment, and attempts to help have sometimes stoked the row over
the causes of the condition. Activists on social media frequently denounce doctors who
suggest that psychological issues play any part in the disease.
Treatment given to young people in the Netherlands has had remarkable results, helping 63%
recover within six months and return to school and a normal life, compared with 8% of those
who had other care.
The children are given cognitive behavioural therapy to understand and overcome the
debilitating exhaustion that neither sleep nor rest can help. The sessions are conducted with a
therapist over the internet, using Skype, diaries and questionnaires. This means children will
be able to get treatment in their own homes in parts of the country where there is nothing
currently available to them.
Esther Crawley, a professor of child health at Bristol University, said she would argue that the
trial she is leading is not controversial. Paediatric CFS/ME is really important and
common, she said. One per cent of children at secondary school are missing a day a week
because of CFS/ME. Probably 2% of children are affected. They are teenagers who cant do
the things teenagers are doing.
Young people and their parents travel from all over the UK to get to her clinic, she said.
They have been travelling for hours. I cant assess a child who has been travelling for
hours.
Online consultations and therapy go down well with young people. Teenagers dont want to
see someone face to face, she said. They want to do stuff online. We use a lot of Skype.
Teenagers like Skype. They can switch you off.
The trial has the support of the Association of Young People with ME, whose chief executive,
Mary-Jane Willows, said: We desperately need treatment for children with ME that they can

get wherever they are in the UK. Most children cannot have treatment even though treatment
improves their chance of recovery. Children tell us they just want to get better.
But Crawley knows the therapy will not please everyone. I think we are definitely going to
get some opposition, but the people opposing the trial are not my patients, she said. The
children and young people who had tried the online therapy loved it, she said, and the parents
were thrilled that there was a treatment that might help them.
Like other health professionals treating patients with CFS, she has suffered verbal abuse from
activists. I cope most of the time, she said. Sometimes I think about giving up. Then she
sees a patient who has waited a long time for a diagnosis and who could be treated.
It really bothers me these children are not being seen. I think it is tragic, she says.
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.
Young people may need counselling on their sleep patterns, for instance. Those with CFS
sleep for a long time because of the fatigue, but that results in poor-quality sleep, which
makes them more tired. One of the things the intervention attempts to do is reset their sleep
patterns, so that they sleep less but better. That has a real biological effect, she said, changing
hormones, appetite and mood.
The trial, involving more than 700 young people, is the largest ever carried out concerning
CFS. It will investigate whether the Fitnet (fatigue in teenagers on the internet) treatment
programme is effective and value for money compared with activity management
information from therapists on how to manage their sleep and activity. Those in the Fitnet
group, and their parents, will get information but be asked to work through 19 interactive
online CBT modules. The children will be asked to answer questions and write diaries. They
will have a weekly online appointment with their therapist who will review their progress and
give advice.
The trial is being funded by the government-funded National Institute for Health Research
and will examine whether the therapy helps young people and whether it is value for money
for the NHS to adopt.
I wanted to sleep all day
Emma, aged 14, first fell ill with what she and her family later found to be CFS in 2011,
when she was nine. I started to get recurrent illnesses. I was feeling really achy with a sore
throat. I didnt feel tired at first. Gradually it got to where I wanted to sleep all day, she said.
It was very stressful for Emma and for her family because it took more than three years
before she got a diagnosis. At one point they were going to the doctor every week. They were
told it was a virus and to get over it.

It was not until January 2015 that she got a diagnosis. There was not a specialist in CFS she
could be referred to. The breakthrough for her family was making contact with AYME, which
helped design a programme to retrain her mind and body it was like retraining a newborn,
said her mother. For Emma, the social contact she got through AYMEs online forum with
other young people suffering the same disease was also crucial. She was very stressed. I
thought I was never going to get better. That led to worrying about my future, she said.
If cognitive behavioural therapy had been available, she would have taken it. She does not
agree with those who say CFS is entirely a physical illness. I think they are wrong. It would
help to talk to somebody about it. I was stuck in the house for a long time, she said. It
would help to cope with it.
Emma not her real name - missed year 5, a lot of year 7 and most of year 8 at school. I
always wanted to have high grades. I was really paranoid about doing badly, she said. She
refused to be held down a year and is now doing very well after home tuition. I would say
Im completely better, she said. Im back to school full-time but when I get ill with
maybe a cold I still sleep for a long time.

1. A clinical trial for Fitnet, a new chronic fatigue syndrome treatment which has proven
highly successful in the Netherlands, will investigate whether the programme offers sufficient
benefits to be adopted by the NHS.

2.
a. 63% of trial participants in the Netherlands were able to return to school and normal
activities, compared to only 8% of those who received other forms of treatment;
b. The treatment will be available to children and young people living in areas which
have previously lacked treatment options for CFS;
c. Children who benefited from this type of treatment greatly enjoyed it.

3. While activists on social media have been instrumental in promoting awareness of various
conditions and raising funds for medical research, denouncing and harassing doctors who
suggest psychological therapy for CFS is highly counterproductive. As trials carried out in the
Netherlands demonstrate, behavioural cognitive therapy can be highly effective in the
treatment of CFS, even though the causes of the disease are likely not psychological. If
researchers like Dr. Esther Crawley are deterred from seeking creative solutions or publishing
their findings by the spectre of public opprobrium, the result will be fewer treatment options
for those who need them the most.