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 full participation in society, the right to education, and work ethics. Claudia’s research interests comprise learning in informal settings, organisational development, and ethics. When Claudia relapsed into severe illness a few years ago, she started taking an interest in Disability Studies while herself struggling with issues of exclusion/inclusion. She realised that able-bodiedness in and of itself is automatically ascribed a positive value, so she has carried out studies that explore 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 home and bedbound people are of great interest to her which is why, in 2016, she assisted Catherine Hayle of the Chronic Illness Inclusion Project secure funding from DRILL via the Lottery Heritage Fund (and with the support of the Centre for Welfare Reform). In her pre-severe illness life Claudia had roles on a number of organising committees for gender equality, she was an adviser to a UNICEF project concerning Human Rights Respecting Schools, worked as an elected member of the Management committee for Action Learning, Action Research Association, Australia, and held the role of their international research coordinator pre-severe illness. She has designed courses, managed teaching programmes in Organisation Studies and Human Resource Management as well as Teacher Education and has taught and supervised extensively on all levels of the higher education system. Claudia has remained an affiliated scholar with the Swedish National Centre for Lifelong Learning at Jonkoping University, Sweden, and is a Fellow of the UK based Centre for Welfare Reform, Sheffield. She is a member of several academic and professional bodies and an occasional editor for Disability and Society Journal, UK.

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.