RFL Fatigue Management Programme

What we learnt from participants

  • We heard how the majority of people seeking help for their ME/CFS found that the travel to and from face-to-face appointments often caused a flare-up itself. As a result, we developed effective and accessible virtual options as an optional alternative.
  • We saw clearly, the stigma and unhelpful patient experiences that some people had received to date and we developed strategies to help address these too.
  • We knew how isolating ME/CFS could be and participants confirmed to us how helpful it would be to connect with others who share their lived-experience of ME/CFS. The groups that we piloted frequently led to support groups forming between attendees. We also have a Peer Support Worker (someone with ME/CFS), who is a vital member of our MDT.
  • However, we know that groups and virtual formats do not work for all individuals and we have kept the option of 1:1 engagement with our team.
  • Due to the memory and concentration issues of ME/CFS, we knew that we could not rely on delivering information once and once only. We have invested heavily in developing our online, free and open-access material. This can be re-visited as many times as needed, shown to loved-ones and other health professionals involved in a person’s care. We have developed online videos and created links to already existing material by world-renowned experts in their field.

However, we shall not rest on our laurels and will continue to be dynamic and listen to feedback, ensuring that we deliver a service that makes the community it serves proud!

  • What is the evidence base for FMPs?

    Our FMPs are under-pinned by the NICE guideline recommendations for managing ME/CFS, but also include, the core components of Acceptance and Commitment Therapy (aka ACT) and Compassion Focussed Therapy (aka CFT), which have proved incredibly popular during our Pilot Programmes. They have a strong evidence base for their effectiveness in helping people live well with long-term conditions, including many of the dual diagnosis that we see in people with ME/CFS; such as pain, anxiety, depression and stress.

  • What can you expect?

    What can you expect?

    • Our FMPs are currently delivered online, via Microsoft Teams. Microsoft  Teams is free to use and you will not have to purchase any ‘in-app’ features. Also, we will send you specific instructions on how to access the course and we can also arrange a ‘tech test’ with a member of our team to familiarise you with the process and address any issues before the first session.
    • You can use multiple devices to access the FMP:  i.e. a laptop with webcam, ipad, smart phone. We are trying to obtain devices for those who may not have access to appropriate IT, as part of a loan scheme. We will update this section of the webpage once we have been able to achieve that.
    • The FMP is 10 sessions long, with each session lasting up to 2 hours. Two hours may feel like uncomfortable at first thought, however, we have breaks and frequently practise meditations and relaxation in that time. The feedback we have had so far tells us that this format works for the vast majority and that they have been pleasantly surprised at how achievable this is.
    • We cover an array of topics and effective self-management tools, such as:
      • Current evidence on causes/nature of ME/CFS
      • Overcoming stigma
      • Identifying and re-engaging with values
      • Energy management
      • Mindfulness
      • The role and how to address difficult thoughts and emotions
      • Communication skills
      • Self-compassion
      • Postural Tachycardia Syndrome management
      • Diet and nutrition
      • Flare-up planning
    • We create opportunities at every point for people to share their lived experiences and learn from one and another. We actively encourage people to ask questions, which you can do in the text chat-box if you would prefer not to vocally do so.
    • We have an extra review session 3 months later to monitor your progress and keep communication channels open.
    • We will also have group support sessions every 3 months for any previous FMP participants to attend. We hope this will keep those connections to the service and your peer-support networks open and prevent people feeling isolated once again. In these sessions, we can refresh certain topics and we will invite guest speakers for other topics of interest.