After many, many months of writing, editing and revising, #MEAction Scotland is finally ready to launch its manifesto! Thank you to all the volunteers and members of the community who have added their ideas and thoughts to shape this document. The purpose of this document is to highlight those areas where we feel our lobbying activity can most effectively bring about the improvements still so badly needed in the treatment of people with ME.
Key issues on which lobbying will focus:
- Discontinuation of PACE-type Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) in Scotland
- Investment in biomedical research
- Education and training of healthcare professionals
- Increased accessibility to and investment in care
The manifesto is intended both as a commitment to action and as evidence of our wider undertaking to be as transparent as possible regarding our work as #MEAction Scotland. It should not, however, be regarded as set in stone. It will be regularly reviewed by the #MEAction Scotland steering group in the light of priorities identified by the #MEAction Scotland community and we will publish an updated version every 6 months. Additionally, we will review the manifesto when #MEAction’s policy and values statements are published. #MEAction Scotland will participate in the creation of these policies with the #MEAction community and will reflect them in the manifesto.
Specific demands we will be making include the immediate removal of CBT/GET from the Scottish Good Practice Statement. Whilst we support the use of appropriate psychological therapy designed to support patients coping with chronic disease, we condemn the use of CBT based on the psychosocial model, which asserts that ME is perpetuated by patients’ beliefs and “deconditioning”. Furthermore, we will seek removal of PACE-style CBT and GET from all education and training materials while bringing pressure to bear on organisations to ensure that revised resources comply with the classification of ME by the World Health Organisation.
We will be calling on the Scottish Chief Scientist Office to give a commitment to ring fence investment of £1 million a year in biomedical research. We will also seek the establishment of a Scottish Centre of Excellence/collaborative research centre, with research and clinical care responsibilities. The centre should help provide epidemiological analyses to inform clinical research and to provide effective support and symptom management for patients. It should also identify strategic needs for collaborative research with national and international partners.
Immediate care needs will be addressed via demands for funding for specialist ME consultants, plus clinical support for people with ME, including those severely unwell, through the provision of specialist nurses in each of the regional NHS Boards. We propose to conduct a survey to identify the wider support required by people with ME and assess how best this can be provided.