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CureME’s Caroline Kingdon on Representing People with Severe ME in Research

Caroline Kingdon, RN, MSc, is a research nurse for CureME, an organization at the forefront of participatory epidemiological, clinical and laboratory research into ME/CFS in the UK. She is also a research fellow at the London School of Hygiene and Tropical Medicine, as well as the lead for the UK ME/CFS Biobank.

Caroline often works with severe ME/CFS patients (PWSME). This patient group usually has poor access to services and has often been excluded from research studies, not only because they are home- or bed-bound, but also because PWSME often disengage from medical services when they encounter skepticism. Reaching them involves complex logistic and economic considerations. Through CureME, she has the unique advantage of engaging include these patients in research, ensuring that they do not have to travel for appointments and are given genuine validation for their struggles.

She shared the following with us in honor of August 8th, Severe ME Day:

It has been my great privilege to visit people with severe ME/CFS (PWSME) in their homes over the past nine years on behalf of the CureME team. PWSME have drawn on their limited energy to welcome me and to help us learn more about their disease and their lives with extraordinary willingness and determination, contributing meaningfully to the pitiful body of knowledge around severe ME/CFS. I have been witness to some of the ways in which individuals have met the challenges of this debilitating and stigmatised disease with resolute courage. I have seen that as the energy required to maintain relationships diminishes, friends and even family may express scepticism and hostility, marriages can break down, and PWME often become ever more isolated. I have often been given an appreciation of the individual now hidden from view – from stories, photos, or discussions with carers: a person who climbed mountains, ran companies, played music or was a critical family member. In ME/CFS, the disease often strips people of so much that defines them, but with genuine validation, with careful and unhurried listening, and nurturing conversation, it is possible to glimpse the individual beyond the disease, even when that person is most severely affected. They have gently taught me about the condition – often with humour and always with resolve, inspiring us to ensure that the research we undertake and facilitate is informed by and for the benefit of people with ME/CFS.

Thank you to Caroline for her work on behalf of PWSME!

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