From InterAction 111, published Autumn 2022
Former Health Secretary Sajid Javid chose the first ever World ME Day to publish a pioneering statement pledging a new approach to ME.
The statement sets out plans for a new cross-Government Delivery Plan on ME for England, aligning with other devolved nations of the UK. The statement, which was made to Parliament on May 12 by Health Minister Lord Kamall, is the first time that Government has made an explicit and dedicated statement on ME.
The statement acknowledges the suffering that people living with ME endure:
“Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) affects the lives of children and adults across the country. It can be an incredibly disabling condition with fluctuating symptoms making it difficult to take part in everyday activities, enjoy a family or social life, access services and engage in work or education – especially for the estimated 25% of people who have severe or very severe symptoms.”
The Government’s statement to parliament also welcomes the launch of the ME/CFS Priority Setting Partnership (PSP) report Prioritise ME which sets out the top ten ME research priorities identified entirely by people with ME, carers and healthcare professionals. This initiative, led by Action for ME and facilitated by the James Lind Alliance, completed a participatory process to identify the Top 10+ ME/CFS research priorities to change the ME/CFS research landscape in the UK and beyond.
The former Health and Social Care Secretary said:
“The UK is a world leader in research and Action for M.E.’s priorities lay out clear next steps in learning more about Myalgic Encephalomyelitis (M.E.). M.E. can be an incredibly disabling condition and not enough is known about it – we must drive forward progress in this area to ensure those living with the condition can be better treated and supported. I am committed to improving the lives of people affected - later this year we will develop a delivery plan to understand how we can improve experiences and outcomes for sufferers.”
Welcoming the Department of Health and Social Care’s statement and launching the ten priorities, Action for ME’s Chief Executive, Sonya Chowdhury, said:
“For too long people with ME have struggled to get their condition diagnosed, understood and acknowledged. On the first World ME Day, it is fantastic to see that this devastating and disability condition is being explicitly acknowledged by Government as priority. This announcement complements the work undertaken through our Priority Setting Partnership, where people of all ages with ME have identified their Top 10 list of priorities that would have most impact on their lives to shape future research.
The report has been a powerful opportunity for the voices and lived experiences of children and adults with ME to be heard, and empower them to set the priorities for ME research themselves, and we look forward to working with Government on their action plan. Through greater partnership working we hope to able to better understand this debilitating disease, with the aim of finding effective treatments and ultimately a cure.”
Following the Rt Hon Sajid Javid’s resignation, people with ME have been left concerned about the future of the Government’s Delivery Plan. Sonya has reassured people that work is continuing on the much needed delivery plan. She said:
“I’m pleased to continue working with such a dedicated and personally committed team of civil servants across the Department of Health and Social Care and other organisations to drive work forward with the ME delivery plan and continue to make a real difference for all our community.”
