'Occupation' as a term refers to practical and purposeful activities that allow people to live independently and have a sense of identity. This could be essential day-to-day tasks such as self-care, work or leisure. People with ME/CFS struggle with everyday activities like personal care, employment and education due to low energy levels.
Occupational Therapists are specialists in fatigue and energy management and tailor intervention to each individual’s needs. Occupational Therapy takes a 'whole-person approach' to both mental and physical health and wellbeing and enables individuals to achieve their full potential.
Occupational Therapy provides practical support to empower people to facilitate recovery and overcome barriers preventing them from doing the activities (or occupations) that matter to them. This support increases people's independence and satisfaction in all aspects of life.
The Occupational Therapist works interdisciplinary with the other professionals in the team providing holistic intervention to enable you to stabilize your energy levels and build up your function and activity gradually.
The role of our Physiotherapists is to help people to make sense of their diagnosis and symptoms. They support people to understand the strengths and ability of their bodies. Physiotherapists traditionally use exercise to facilitate a return to important activities and to maintain a fit and healthy lifestyle. Physiotherapy in ME/CFS management is different to traditional physiotherapy in that it incorporates the biopsychosocial model into the approach. This means that the physiotherapist works closely with all the ME/CFS clinicians on the team to ensure the best possible outcome for the long term. They conduct similar interventions to other members of the team like understanding energy, pacing, purposeful rest and graded exposure to movement and function.
Our friendly Clinical Nurse Specialists work closely with all of the team to provide care to our patients. Like other members of the team they are highly experienced and dedicated to helping people make sense of their fatigue and explore how all areas of their lives may be affected by it.
The ME/CFS Specialist Nurse uses a holistic approach to support patients to manage their long-term condition. Nursing encompasses collaborative care for the patient and one that is built on trust. This is done by using an individualized plan of care using strategies that are evidence-based for ME/CFS. These include pacing physical, cognitive and emotional energy. Looking at sleep, stress, pain and daily routine.
The role is based around providing education, listening and giving realistic, up-to-date advice and support regarding ME/CFS.
Adjusting to and living with ME/CFS can be a challenging and distressing journey. We understand that having ME/CFS can affect your psychological well-being, given the impact the condition may have had on many areas of your life, including your work life, social life, family life, confidence and mood. People can feel frustrated, isolated and misunderstood.
Some individuals may benefit from the input of the Clinical Psychology team, who are experienced in delivering a wide range of therapeutic approaches such as Acceptance and Commitment Therapy, Cognitive Behavioural Therapy and Compassion Focused Therapy, which we can tailor to your individual needs.
We work together with you to help best manage your symptoms both physically and emotionally, to move towards helping you achieve a balanced lifestyle and to focus on what is meaningful and important to you to help improve your overall quality of life, despite ME/CFS.
We know that medication is one of the many tools we have to help us manage our symptoms of ME/CFS. Our pharmacist may see you to discuss your medication in more detail with you and in order for you to understand the role of medication in managing sleep and pain. This may be to discuss concerns you may have or that your GP may have, to formulate and optimise your medication plan, to explore medications that might help or to reduce and stop medications that might no longer be effective or that could be causing side effects.
The Pharmacist works closely with other clinicians in the team, particularly the doctor and nurses, to help manage your medication between them. The pharmacist will communicate with your GP regularly to ensure they are happy to continue with any changes we recommend and to keep them informed of the plan going forward.
The Pharmacist offers a range of face-to-face and telephone appointments at different times during the week.
Our Doctor’s role is to make sure there is a good understanding of the medical issues relating to ME/CFS, to ensure we’re not missing anything worrying, and to also help guide how best to move forward with treatment.
Other non-pain and fatigue-related medical conditions may have an impact on rehabilitation, so we aim to understand this too. Understanding why we have pain and fatigue can be important, but sometimes there is no clear diagnosis or indeed cure. Often, a few things can be playing a part in pain and fatigue; this can explain why treatments can sometimes partly work.
Education around pain and fatigue, plus pain and fatigue pain research, is one of the interests shared by many of us in the team (and why you may be given the occasional questionnaire!)