FITNET-NHS: Information for families

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

We are inviting children and young people from across the UK, together with their parents/carers, to take part in this study. It is up to you to decide if you would like to take part.  If you take part but change your mind later, that is fine. Everyone who takes part in the study will be offered specialist treatment without having to travel.

If you are a child or young person with CFS/ME and would like to receive treatment, ask your GP to refer you to the Bath Paediatric Specialist CFS/ME service

  - Who can take part?

 

UK children and young adults can take part in the study who:

  • are aged between 11 and 17 years (inclusive)
  • have a diagnosis of CFS/ME and
  • do not have access to a local specialist paediatric CFS/ME service 

How does the study work?

For more details, please read our information leaflets, downloadable below.

Young people are referred to the Bath Specialist Paediatric CFS/ME Service by their GP, and those who are potentially eligible are invited to find out more about the study. Families that are still interested then have a telephone discussion with a member of the team who will answer any questions and check eligibility. Young people who consent are randomised to receive either Activity Management or FITNET-NHS treatment. We ask families to fill in research surveys before, during and after receiving treatment.

The treatments:

Activity Management and FITNET-NHS are both similar to the specialist treatment already provided face-to-face by the Bath CFS/ME team. Both treatments involve:

    • specialist advice on sleep and building up physical, thinking, social and school activities
    • one-to-one contact with a therapist 
    • bespoke support based on individual symptoms, activity levels and goals

The difference from standard treatment at Bath is that these two treatments are delivered entirely online: in Activity Management, young people and parents talk to a therapist over Skype while in FITNET-NHS, young people and parents talk to a therapist via email and complete treatment chapters online. This means families receive specialist treatment at home.

  1.  Activity Management (Skype): 

  • Children/young people (and their parents) receive information on managing activities and sleep from a CFS/ME specialist therapist over up to six video (Skype) calls.
  • Therapists provide a detailed assessment of each participant’s daily activities and start with establishing a manageable baseline.
  • Therapists then give bespoke advice and support on how to increase this level safely over time. Children are asked to complete some tasks between sessions (e,g, completing diaries).
  • The specialist therapist hands over care to the local GP or paediatrician and provides support to them (up to three phone calls).

2. FITNET-NHS (online program with e-consultations):

  • The FITNET-NHS program includes up to 19 interactive online chapters which cover sleep, building up physical, mental and social activities (including school) as well as CBT-specific chapters looking at helpful thoughts and shifting attention away from fatigue.
  • Young people are asked to complete tasks (e.g. answering questions and completing diaries).
  • Each young person and parent has regular one-to-one e-consultation contact with their allocated CBT-trained therapist who reviews progress according to individual goals and provides bespoke support to make positive changes.

 Download your information leaflets here:

Participant Information Leaflet
for 11 - 15 year olds
Participant Information Leaflet
for 16 - 17 year olds
Participant Information Leaflet
for parents/carers

FITNET-NHS patient information leaflet 11-15 years (v7) (PDF, 217kB)

FITNET-NHS patient information leaflet 16-17 years (v7) (PDF, 213kB)

FITNET-NHS patient information leaflet parent/carer (v7) (PDF, 231kB)

Our information leaflets were developed with support from a CFS/ME Patient Advisory Group (PAG), and designed for patients of different ages and their parents/carers. They were reviewed and approved by an independent ethics board.

 

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Consent, withdrawal and your data

Consent is important to us and all participants will be asked to provide consent.  Our consent forms received ethical approval. We ensure that both parents and children and young people are happy to take part. Consent is an ongoing process and throughout the study we will continue to make sure that participants are happy to participate.  Participants are free to withdraw at any time. 

Participants provide formal written consent at a number of stages during the study:

  1. Firstly children/young people (and their parents) are given information about FITNET-NHS during an initial phone call with a specialist nurse. If they are interested and would like to learn more about the study they are provided with a patient information leaflet (as above) and are asked to complete a consent to contact form and a questionnaire online. At this point they are simply consenting to hear further information, not giving consent to participate in the trial. 
  2. Children and young people (and their parents) who consent to being contacted receive a phone call at an arranged time from a member of the research team. They are provided with further detailed information about the trial, including how to take part and the two different interventions. The researcher answers any questions that the child/young person and the family may have. If the young person and their family still wish to take part, then they are asked to complete a full consent form online. 
  3. It is important that we know what children/young people and their parents think about the study and the treatments, so we invite some participating families to talk to us about their experiences. We also ask the clinicians providing the interventions about their experiences. We ask for consent separately for taking part in these discussions. 

We are very careful about how we use your data. 

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