Keeping ME Warm: take part in new research  

People with ME often tell us how their symptoms are adversely affected by fluctuating and/or extreme temperatures. We understand the heatwaves this summer had a particularly significant impact. 

Action for ME and National Energy Action are now working together to better understand experiences of fuel poverty, using power at home, and the needs of people living with ME/CFS or Long Covid. 

As part of our two-year Keeping ME Warm project, funded by the Energy Industry Voluntary Redress Scheme, we are inviting people with ME/CFS or Long Covid to take part in our joint research.  

Please read our research invitation letter, which explains how: 

• This research aims to gather views and experiences about using electricity, gas or other fuels at home, comfort, affordability, and the impact on health and wellbeing.  

• We are asking people to read our Research Information Sheet before deciding to take part. 

• Participation is voluntary.  

• People can take part via questionnaire, via interview, and/or by completing a diary. Reasonable adjustments can be made for you to take part in these activities.  

• As a thank you, participants can choose to enter a prize draw to win one of three shopping vouchers. 

• Responses will help shape future support for people affected by ME/CFS or Long Covid.  

The deadline for completing the questionnaire is Thursday 31 December 2026. Interviews and completing diaries will take place between November 2026 and February 2027. 

If you have any questions about this research, contact our Projects and Participation Senior Practitioner Avril McLean by email. You can also email Avril if you would like to receive updates about the tailored advice, information and resources, including via workshops, that we will offer in 2027 as part of this project. 

If you need support or advice with affording gas, electricity, or other fuels, please contact National Energy Action.