Home treatment for children with Chronic Fatigue Syndrome (CFS/ME)

  • Teenagers aged 11 to 17 years with CFS/ME who have no access to a local specialist service can now have treatment at home within the FITNET-NHS Trial of online therapy. All children in this study will get specialist treatment.
  • If you are a health professional, please see Information for healthcare professionals for referral information

What is the FITNET-NHS 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, an online Cognitive Behavioural Therapy (CBT) program, is effective in the NHS, and whether it offers value for money compared to Activity Management (delivered via Skype).

What is CFS/ME?

CFS/ME is defined as generalised fatigue, causing disruption of daily life, persisting after routine tests and investigations have failed to identify another reason for the fatigue. For example, thyroid disease or diabetes. Children and young people with CFS/ME will have had fatigue which stops them doing normal activities for at least 3 months. The fatigue and other symptoms get worse after exertion. Other common symptoms in children and young people are unrefreshing sleep, problems with memory and concentration, headaches, nausea (feeling sick), dizziness, muscle and joint pain, and sore throats.

For more information about CFS/ME please see the NICE guidance. 

Why is this study important?

CFS/ME is common.  At least 1% of teenagers miss a day a week of school because of CFS/ME. Children and young people with CFS/ME suffer because they cannot do what they want to do. They miss large amounts of school, social activities and sport. We know that mothers often have to reduce or stop work (and we assume this is likely to be true for all care givers). The National Institute of Health and Clinical Excellence (NICE) says that children with CFS/ME should be able to access specialist care and treatment. Specialist treatment is effective but most children in the UK do not have a local specialist service and therefore cannot access treatment. 

We need to improve treatment for children and young people who have CFS/ME but do not have access to a local specialist CFS/ME service.  In this study we will test two treatments that can be delivered at home. The FITNET-NHS study provides two interventions: either cognitive behavioural therapy (CBT) online or Activity Management delivered via video call (Skype).

FITNET was effective in the Netherlands [FITNET Lancet 2012 (PDF, 143kB)].  The Dutch study was different to this study as in the Dutch study, participants who did not receive FITNET only received usual care. In our study, children and young people will receive either FITNET-NHS or Activity Management. We don't know which treatment patients will prefer or which is better for them. We are doing this study because we need to know which treatment is best. We also need to know whether treatment is good value for money before the NHS can use it. Activity Management is used as the comparator in this study as it is recommended by NICE and is currently the best alternative for children in regions without a local specialist CFS/ME service.

About 30% of children and young people with CFS/ME develop problems with low mood or anxiety. We do not know whether treatment is effective for this group of patients. Our study will be able to tell us whether FITNET-NHS is effective for children and young people with CFS/ME and low mood or anxiety. 

How does the study work?

Children, aged 11 to 17 years, will be referred to Bath Specialist Paediatric CFS/ME Service by their GP.  Potentially eligible children will be identified and invited to find out more information about the study. Those who are interested will then have a discussion with a member of the research team about the study and will go through eligibility screening. Participants who consent will be randomised to receive either Activity Management or FITNET-NHS (CBT online).

Both treatments will: give advice on sleep and building up physical, thinking and school activities, have one to one contact with a therapist and give advice based on your individual symptoms, activity levels and goals similar to what is provided in face to face treatment in Bath.

The difference is, in Activity Management, you and your parent(s) will talk to a therapist over Skype. In FITNET, you and your parent(s) will talk to a therapist over emails and complete treatment chapters online. FITNET also includes chapters focusing on CBT, helpful thoughts and shifting attention away from fatigue. 

  • Activity Management: Children and young adults will receive information on managing activities and sleep from a CFS/ME specialist therapist over up to six video (Skype) calls. Therapists will provide a detailed assessment of each participant’s daily activities and will give advice and support on how to increase this level safely over time. Children will be asked to do homework (and may need to complete diaries including the ActiveME App). The specialist therapist will hand over care to the local GP or paediatrician but will provide support to them with up to three phone calls.
  • FITNET-NHS: Children and young adults (and their parents) will receive information on managing sleep and activity. FITNET-NHS is delivered online using e-messages. It is adapted for each child who can complete some/all of 19 interactive online chapters which cover sleep, building up physical, mental (including school), and social activities and thinking patterns. Children will be asked to do homework (answer questions and complete diaries). Each child and parent will be in contact with their allocated CBT-trained therapist over e-consultation and the therapist will review progress according to individual goals and support behaviour change.

Who can get involved in the FITNET-NHS study?

Bath Specialist Paediatric CFS/ME Service will deliver both treatment arms. Patients are eligible if they have CFS/ME, have been seen by a paediatrician locally (this is NICE guidance), have had their screening blood tests done (NICE guidance) and do not have access to a local specialist CFS/ME service. 

If you are a GP or paediatrician, you can find out more about referring patients to Bath Specialist Paediatric CFS/ME Service, CFS/ME, and FITNET-NHS at Information for GPs/Healthcare professionals.

If you are a child or young person suffering from CFS/ME (or you are the parent/carer of one), you can find out more about the study at Information for Participants

Who is funding the study?

The study is funded by the National Institute for Health Research (NIHR) Health Technology Assessment (HTA) Programme. The research question was submitted through the NIHR HTA Programme’s researcher-led workstream by Professor Esther Crawley.

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