Two of the major charities for Myalgic Encephalomyelitis (M.E.) – Action for M.E. and The ME Trust – have announced they merged on 1 February 2022 to improve access to services for people with M.E., and their families and carers. M.E., sometimes diagnosed as Chronic Fatigue Syndrome (CFS), is a chronic neurological condition affecting an estimated 250,000 adults and children in the UK. One in four people with M.E. is so severely affected that they remain house and/or bed bound.
All existing services currently delivered by the two charities will continue in the merged organisation, and there will be no redundancies because of the merger. The merged charity will continue to be known as ‘Action for M.E.’, with Sonya Chowdhury remaining as Chief Executive of the merged charity. Helen Winning, the current Chief Executive at The ME Trust, will join Action for M.E. as the Director of Healthcare Services, a new role intended to oversee the newly created healthcare division within Action for M.E.
By merging, the charities hope to improve access to and increase the services available to people with M.E. Although 2021 saw some improvements for people with M.E., such as NICE updating their guidelines advising of the treatment and management of M.E., there remains a considerable lack of understanding about the impact of M.E. on individuals. In response to the ever-growing public health crisis and ignorance towards the condition still existing, the two charities merging will combine and extend specialist services that are not readily accessible via traditional routes. From Tuesday 1 February 2022, the merged charity will offer: Information, Support and Advocacy plus peer support groups for all ages, alongside healthcare services such as Doctor, Physiotherapy, Chaplaincy and Counselling creating a single point of access for people with M.E. Bursaries will be available for the healthcare services.
Sonya Chowdhury, Chief Executive at Action for M.E. said:
“Our merger will increase holistic and clinical support to a community that has faced major issues in accessing support despite having a disease that severely damages lives. Our hope is that children and adults have access to clinical services delivered by professionals who fully understand the impact of M.E. on individuals and their families”.
Action for M.E. takes action to end the ignorance, injustice and neglect faced by people with M.E.. We are the only UK charity to support people with M.E. of all ages. Alongside providing targeted information, support and advocacy to children, young people, and adults with M.E., we offer peer-support services that reduce the isolation that so often comes with M.E. We work closely with professionals and policymakers to improve access to appropriate care and support services, and collaborate with scientists, patients, and clinicians to move biomedical research forward, including funding PhD programmes and co-leading DecodeME, the world’s largest M.E. DNA study. DecodeME aims to see whether the disease is partly genetic and if so, help pinpoint what causes it, and ultimately find treatments.
Key statistics
- M.E. affects an estimated 250,000 people in the UK, including 20,000 in Scotland, and around 35 million people worldwide.
- Myalgic Encephalomyelitis (M.E.) is a long-term (chronic), fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune systems
- One in four people with M.E. is so severely affected that they remain house and/or bed-bound, unable even to tolerate being touched by their loved ones.
- Adults with M.E. are six times more likely to die by suicide than the general population
- M.E. is the most common cause of health-related long-term school absence and has a profoundly disruptive effect on children’s ability to socialise and perform at school.
- M.E. cost the UK economy at last £3.3 billion in 2014/15 – the figure accounts for healthcare costs, disability-related welfare payments, productivity losses and unpaid informal care.
Action for M.E. uses the terms M.E., CFS and M.E./CFS because we do not wish to withhold support from those who have been given a diagnosis of CFS, as opposed to M.E. We recognise that it is quite possible that M.E./CFS may be an umbrella term for a number of illnesses. Therefore, it is critical that there is more biomedical research to further investigate and validate our understanding and increase knowledge of the different sub-groups (phenotypes) of M.E. and/or CFS.
The M.E. Trust was a UK charity that offered individually tailored whole person care to people with M.E., including access to doctors, nurses, physios, nurses, counsellors, and chaplains. As well as listening and caring for the needs of the whole person, the charity offers encouragement and support to families and immediate community of carers. The merged Action for M.E. charity will scale up the current clinician-led, holistic health and wellbeing support previously delivered by The ME Trust to fill the gaps more quickly.
Ed: I must declare a personal interest in M.E. since my wife has suffered from it for more than four years. For more information, please contact Evan Francis, Communications Manager, at media@actionforme.org.uk.
