APPG on ME Report: Rethinking ME
The findings of this report highlight that there has been a long-term disconnect between the treatment deserved by people with ME and what they experience in reality.
“We view these recommendations as a starting point on which to build creative strategies across the governments of the UK, service providers and research institutions for the transformation of our society’s approach to ME.
Furthermore, we wish to see the UK take a pioneering stance towards ME research and a compassionate attitude towards people with ME at a time when we are seeing an increasing trend in the development of ME-like symptoms as a result of COVID-19.”
“People with ME require major cultural and policy change to take place within all professions associated with their care and support.”
The 20 recommendations in this report should be considered the starting position for Government policy. Summary of Recommendations:
- The UK and Devolved Governments must each conduct a comprehensive review of current ME service provision with a view to implementing the new NICE ME guideline recommendations in full and creating strategies to transform the approach towards ME in health, welfare, social care, research and education.
Biomedical research and research funding
2. Coordinated research strategies must be developed to encourage high quality ME research.
3. Government research bodies should ensure that there is a parity of biomedical funding between ME and other serious long-term conditions.
4. Centres of ME research excellence should be established to drive forward the development of effective treatments.
Diagnosis, symptom management and services
5. Health professionals should follow the new NICE guideline for ME and ensure that ME patients do not undergo any form of GET.
6. Updated ME medical training should be provided by the Royal Colleges and medical schools to relevant health professionals and students.
7. Health service commissioners should review the adequacy of current ME services and take steps to ensure that service provision is carefully planned, resourced, and implemented.
8. People with severe and very severe ME should be provided with a care package based on the basic care principles detailed in the new NICE guideline.
Children and young people with ME
9. Health commissioners should ensure that all children and adolescents with ME have access to correctly trained hospital paediatricians and long-term community services.
10. The Royal College of Paediatrics and Child Health (RCPCH) should ensure that all paediatricians receive specialised training on recognising, diagnosing and managing ME in children and adolescents.
11. An independent second medical opinion obtained by a parent or guardian of a child with suspected or confirmed ME should be fairly considered in any decisions regarding diagnosis, treatment or welfare.
12. The Chief Social Worker (or equivalent in the devolved nations) should ensure that the guide for social workers working with children and young people with ME or suspected ME (developed by social workers in partnership with Action for M.E.) is shared with all social care departments.
13. Children and young people with ME should have a care plan, in accordance with national guidelines and/or statutory requirements, combining education and health.
14. Schools, colleges and higher education institutions should make learning and assessment modifications for students with ME.
Welfare and health insurance-based benefits
15. The Department for Work and Pensions (DWP) should ensure that people with ME have equitable access to welfare benefits by taking steps to (1) account for the impact of ME on the ability to engage with the application process and (2) minimise potential negative health effects associated with medical assessments.
16. Health insurers should not require people with ME to undertake GET, CBT or health assessments that require levels of activity which could produce adverse health effects.
COVID-19 and the ME community
17. Long-term health planning should consider the high number of individuals experiencing long COVID following a COVID-19 infection.
18. Health service commissioners should ensure that there is cooperation between ME and long COVID clinics to maximise patient benefit.
19. Long COVID research projects should include ME patients as a comparative group.
20. Further publicly funded biomedical and clinical research should be commissioned to investigate and compare a range of post-viral conditions, including ME
WAMES is grateful to all involved in preparing the report and all current members of the APPG, and especially those from Wales:
Carol Monaghan MP, Scottish National Party, Chair
Baroness Scott of Needham Market, Liberal Democrats, Co-chair
Baroness Finlay of Llandaff, Crossbench, Co-chair
Stephen Metcalfe MP, Conservative, Co-chair
Sharon Hodgson MP, Labour, Co-chair
Jason McCartney MP, Conservative, Officer
James Davies MP, Conservative, Officer
Debbie Abrahams MP, Labour, Officer
Ben Lake MP, Plaid Cymru, Officer
Hywel Williams MP, Plaid Cymru, Officer
Fleur Anderson MP, Labour, Officer