Jenny Lyus

Campaigner and activist on chronic illness

From her position of chronic illness disability, Jenny's passion for positive social change is focused on efforts to better represent the voice of this community. She is interested in building on ideas such as the Social Model of Disability and the 'Spoon Theory' to find better ways to represent the unheard and unmet needs of the chronic illness community, both within the Disability Rights Movement and wider society. Jenny was also a Co-Investigator on our Chronic Illness Inclusion Project.

During her 19 years lived experience of chronic illness, she has worked with other disabled people in a variety of settings including starting out in support work and Further Education lecturing. She has had project management style roles in two charities which promote the Social Model of Disability, Action on Disability and Work UK (formerly the Vassall Centre Trust), and disabled children's charity Time2Share.

Recently Jenny has been using her limited energy to agitate for better ME research and against inappropriate clinical guidelines, with ME Action Network and the stopGET campaign. She connects with the chronic illness community through social media, sharing tips on Twitter and through her personal blog.

Jenny can almost always be found at home with her Miniature Schnauzer. She enjoys creating surface designs for fabric, mugs and cards with her partner but can more often be found in front of a Netflix box set.

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