Action for ME and National Energy Action (NEA) are working together to conduct research to better understand experiences of using power at home, and the needs of people living with ME/CFS or Long Covid.
The NEA invited us to partner with them and apply to the Energy Industry Voluntary Redress Scheme to make a difference for people with ME around their use of fuels such as gas and electric. The scheme’s priority is to support energy consumers in vulnerable situations.
Thanks to our funding application being successful, our two-year Keeping ME Warm project is now combining Action for ME’s lived‑experience expertise with National Energy Action’s energy advice infrastructure to improve outcomes for people with ME/CFS or Long Covid.
The aim of this partnership is to create learning that can be used in inform how organisations create and offer advice on using power and fuel when the people they advise are living with a long-term health condition. We hope the research can have a wider impact on how people with a health condition get support around their fuel use.
Learning will be shared through fuel poverty forums and will influence NEA’s way of working in the future. An evaluation report will be shared after the research has been analysed and it will aim to contribute to a more inclusive and condition‑aware, power‑advice landscape.
There are several phases to the project, starting with the research phase. To make taking part as easy as possible we have several ways that you can get involved in the research. These are:
Read more about these and get involved here. Â
Later in this project, we will offer tailored advice, information and resources, including via workshops, for people with ME and Long Covid on accessing fuel schemes, avoiding gas/electric debt and where else they might go for help in managing the cost and source of their power or fuel.
Some areas we will likely cover are:
We will offer information on where to go for support with these issues and for support with benefits and how you can maximise your income.
If you want to register your interest in attending a workshop, please email our Projects and Participation Senior Practitioner, Avril McLean. We will be in touch with more information as soon as we can. You can change your mind after you register.
A project insight report will capture the learning from project staff, along with the questionnaire, diaries and interviews, and feedback on workshops and resources, to evaluate the work of the project.
We hope this rich source of information, expertise and lived experience can influence policy, and support other organisations work around fuel, energy and other health conditions.
