Severe ME/CFS:
A Guide to Living

Urgent action is needed to improve the lives of 250,000 children and adults with M.E., and their families, impacted by this disabling neurological illness.

UK charity Action for M.E. aims to end the ignorance, injustice and neglect experienced by everyone with M.E. Their mission is empowering people with M.E. to fulfil their potential and secure the care and support they need, while working towards a greater understanding of the illness and ultimately a cure.

Action for M.E. offers free information, peer-support and advocacy services for adults, children and families affected by M.E., alongside Healthcare Services following its merger with the ME Trust in February 2022. Action for M.E. began producing Emily’s book when the original publisher, the Association of Young People with M.E., was taken over by the charity in 2017. The latest edition of the book was published in April 2022, to reflect the 2021 NICE guideline for M.E. and revised information about welfare benefits.

Sonya Chowdhury, CEO, Action for M.E., says: “Action for M.E. is honoured to continue producing Severe ME/CFS: A Guide to Living, a precious resource that we know has helped so many people. The insight, expertise and encouragement in every chapter, brought together by Emily when she was incredibly unwell herself, makes this an invaluable companion for anyone facing the considerable challenge of living with severe M.E. We are grateful for the opportunity to work alongside Emily’s family and friends to ensure that it reaches those that need it.”

Action for M.E. also works closely with professionals and policy-makers to improve access to appropriate care and support services, and collaborates with scientists, patients and clinicians to move biomedical research forward, including funding PhD studentships, co-leading DecodeME, the world’s largest M.E. DNA study, and facilitating the M.E./CFS Priority Setting Partnership (PSP).

Writing in Action for M.E.’s 2021 annual report, Sonya says: “Over the next five years, it is our aim that our holistic services will facilitate improved access to health, support and advocacy services for children and adults with M.E., their families and those working with them, in a way we can measure and constantly strive to improve on. GPs will have increased understanding of M.E. and better recognise what helps and what harms their patients. There will be a robust research programme in place for one or more of the top ten priorities identified by people with M.E. through the PSP. People with M.E. deserve better, and we will continue to work together with you and others who share our values and ambitions to achieve this.”