The All-Party Parliamentary Group on ME has launched its Rethinking ME report with a reception at Portcullis House, Westminster. The Right Hon. Sajid Javid (Secretary of State for Health and Social Care) spoke about a young relative’s 6 year battle with ME. Now 18 years old, she is desperate to get on with her life but doctors had little to offer her.
Sajid Javid said that the health service had failed in its attitude towards treatment of the illness but pledged to lead a cross-government initiative on ME. This would involve healthcare, education and the benefits system, while placing a new emphasis on research into the poorly understood condition. He will convene a panel next month with researchers from around the world in an effort to encourage new treatments.The Times 26th May 2022
The Report is divided into 5 chapters and features a foreword by ME Research UK’s Patron, the Countess of Mar.
The Report covers a number of areas:
Chapter 1: Biomedical Research and Research Funding
Chapter 2: Diagnosis, Symptom Management and Services
Chapter 3: Children and Young People with ME
Chapter 4: Welfare and Health Insurance-based Benefits
Chapter 5: COVID-19 and the ME Community
For ME Research UK, Chapter 1 is of particular interest. Key recommendations include:
- Coordinated research strategies must be developed to encourage high quality ME research.
- Government research bodies should ensure that there is a parity of biomedical funding between ME and other serious long-term conditions.
- Centres of ME research excellence should be established to drive forward the development of effective treatments.
The political focus on these issues is welcome, especially given the the statement from the Rt Hon. Sajid Javid, Secretary of State for Health and Social Care, on International ME Awareness Day. However, solutions must be found to issues which have been long known about. The disparity of funding was highlighted in the Uber report and questions have been raised previously over central funding bodies.
Discussions at the highest level mean that political will may just force a resetting of the ME landscape. We are ready to act to transform the ME research landscape.
Update – Three researchers have authored a ‘Response to the report published by the UK House of Commons All-Party Parliamentary Group on Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME): implications for cardiometabolic risk’ which counters certain statements in the APPG report including that the
biopsychosocial model is not a dichotomous model where a medical condition is viewed as ‘all in the mind’ or purely medical. On the contrary, the biopsychosocial model postulates that mind and body are linked, with a complex relationship between the two. The fact that there may be a psychological component does not make the condition any less valid and certainly does not preclude the fact that there may be something medically wrong.
and concludes that
We do not believe that the answer to improving the lives of those living with ME/CFS is in discouraging the use of the biopsychosocial model. Surely, individuals living with ME/CFS are best served by a holistic biopsychosocial formulation considering all aspects of the reality of living with this very disabling condition. ME/CFS is a complex condition that requires a multi-track not uni-track treatment approach in all aspects of its management. Any intervention that can result in greater activity levels is likely to reduce cardiovascular risk.