Big Survey discussed in the House of Lords

On Thursday 18 June, the House of Lords is considered the following question for short debate: Baroness Scott of Needham Market (Liberal Democrat) to ask His Majesty’s government what is their policy towards the (1) treatment of, and (2) research into, severe myalgic encephalomyelitis (ME).

Approximately one in four people with ME are severely or very severely affected. Our preliminary results, read out during the debate, show that people living with the most severe forms of ME experience extremes of both bodily suffering and societal neglect:

• Existing NHS specialist ME services are inaccessible to those who are most unwell. Almost two thirds of Big Survey respondents with severe ME and four in five respondents with very severe ME told us that they could not access their local ME service because they were too ill.
• People living with severe and very severe ME typically receive no ongoing support from the NHS. The vast majority of respondents with severe and very severe ME reported receiving no follow-up care, monitoring or review from either their GP or specialist ME service. Only one in ten respondents with severe and very severe ME feel supported by the NHS.
• Malnutrition is a significant risk for people with severe and very severe ME. One in four respondents living with severe ME and more than half of respondents living with very severe ME told us that they struggle to eat enough to maintain their weight.

Katharine Cheston, Postdoctoral Research Associate in Durham University’s Institute for Medical Humanities and Department of English Studies, led on the design of the 2025 Big Survey.