Table 3 Patient, carer and practitioner resources

The need to ensure that the patient feels believed

• E-learning resource for GPs and other health care professionals, containing guidance and information on the evidence base (Appendix 1) as well as clips of consultations demonstrating skills that are helpful in managing patients with CFS/ME.

The need for positive framing of the diagnosis

• A brief information leaflet to be provided by the GP at diagnosis. This provides an overview of the symptoms of CFS/ME, the management options and useful websites and resources.

• E-learning resource for GPs and other health care professionals, including guidance and information on how diagnose a patient with CFS/ME (Appendix 1).

• Patient activity diary to be used by the GP to aid diagnosis.

The need to define, prioritise and manage symptoms

• A set of A4 information leaflets on the management of each of the main symptoms that can be printed from the practice computer (fatigue, sleep, pain, cognitive dysfunction/memory problems, managing setbacks, work and education, stress, anxiety and depression and diet and nutrition). As patients have stated that they can be overwhelmed by too much information this takes a modular approach. Patients will be encouraged to prioritise their symptoms and discuss management options at each consultation. The patient will be given a folder to then keep this information together.

• DVD for patients and carers where the evidence base and symptom management modules will be presented by CFS/ME specialists. This was produced in order to overcome problems associated with CFS/ME in terms of concentration, and problems of language and poor health literacy (Appendix 2).

• E-learning resource for GPs and other health care professionals, containing guidance and information on how to manage patients with CFS/ME (Appendix 1).

The need to get the most out of the consultation

• DVD for patients and carers with an example of how to prepare for a consultation and how to prioritise symptoms (Appendix 2).

• E-learning resource for GPs and other health care professionals, containing guidance and information on how to support the patient and carer in the consultation (Appendix 1).

The need to support carers

• DVD for patients and carers which can be watched with the family. This includes information for carers and a real life account of a carers’ experience of caring for someone with CFS/ME (Appendix 2).

• A4 information leaflet provides information for carers.

• E-learning resource for GPs and other health care professionals, containing guidance and information on how to support carers (Appendix 1).