Trustees

Emma Joy

Emma holds a degree in economics and has worked in investment management and as a teacher. Interests include feminist economics, childcare policy and unpaid contributions to the economy, she is a member of the Royal Economics Society. She is passionate about the inclusion of people with chronic illness and in particular children and their education. Emma has been an ME patient for 21 years after spending her childhood pursuing an athletics career which came to an abrupt end at university after falling ill, she particularly resents the idea that patients are ‘lazy or crazy’. Emma runs an online support group for patients in Surrey and is an ‘Experienced Patient’ mentoring others on Natural Health Worldwide, a portal connecting patients to practitioners. Emma set up the Foundation after seeing a need for a charity that includes ethics at the heart of its work and valuing the large contribution patients have made addressing the injustices they face. Having experienced exclusion and discrimination in employment, by health professionals and finding barriers to care during pregnancy and child birth, the need for adequate patient support and representation is foremost in Emma’s drive for change.

Dr Claudia Gilberg

Claudia has a PhD in education and has always been interested in building bridges through participatory methods that help facilitate community-based projects. She supports collaboration to address pressing issues of citizenship, full participation in society, the right to education, full access and work ethics. Claudia is inspired by the early feminist pragmatists as well as John Dewey’s philosophy and practice of education and democracy. Claudia’s research interests comprise learning in informal settings, participation, organisational development, ethics and feminist pragmatism. When Claudia relapsed into severe illness a few years ago, she started taking an interest in Disability Studies while struggling with her own identity and issues of exclusion/inclusion and full citizenship. She realised that able-bodiedness is automatically ascribed a positive value, so she is now exploring ways to understand and resolve problems of devaluation and exclusion owing to chronic illness and ensuing disability. Online participation and activism as forms of exercising citizenship for the home and bedbound are of great interest to her. In her pre-severe illness life Claudia had roles on a number of organising committees for gender equality, advised UNICEF on their project Human Rights Respecting Schools, helped organise a World Congress for Action Research in Melbourne in 2010 and supervised Masters and PhD students. She has taught on the history and philosophy of education, gendered knowledge production, teacher education programmes, citizenship and education, as well as feminist pragmatism. Claudia is an affiliated scholar with the Swedish National Centre for Lifelong Learning and a member of several academic and professional bodies.

Geoff Jones. Geoff has an MSc in Medicinal Chemistry and an interest in ME, Parkinson’s Disease and TB. He is a writer with lived experience of chronic illness after becoming ill with ME aged 13. Initially too ill to attend school, as his health improved he found accessing education was dependent on helpful and sympathetic personnel rather than on structures and regulation. Geoff’s main areas of concern are the societal barriers limiting access to education for children and young people with severe chronic illness, the media’s misrepresentation of ME, and the misuse of science to promote harmful ideologies. His personal experience in studying with the Open University has demonstrated how access can be provided if the correct systems are in place in an institution designed to be inclusive, although recent changes to the OU’s structure and funding risk restricting access to people with chronic illness. Social and cultural exclusion have played a large part in Geoff’s life and he is keen to promote mechanisms, primarily via online platforms, to increase the participation of the chronically ill and disabled in the workplace. He has an interest in the social/political/cultural aspects of exclusion. Geoff is an adviser to the Chronic Illness Inclusion Project, a co-author of the uttingwolffSpouts blog, which has written about the PACE trial from a social and scientific perspective, and an Associate Member of The Royal Society of Biology (AMRSB). He is also a keen naturalist and conservationist.

Adam Joy. Adam holds a degree in Business and is a CFA charter holder. He works as an investment manager and is a chartered member of the Securities Institute . His interests include sustainable investment and impact investing. He is passionate about ME patients and their families receiving better care after 15 years of living with a partner with the illness. Adam is acutely aware of the issues that carers and relatives of patients deal with and in particular the challenges of raising a young family whilst coping with the impact of the illness.