Alastair Miller claims there have been “years of well-funded research” into ME (“Maeve Boothby-O’Neill’s harrowing case highlights clashing NHS narratives on ME”). We disagree. UK research funding for myalgic encephalomyelitis has been demonstrably insufficient compared with the high symptom burden and with other diseases. From 2015–2020, just £6m was committed in funding for ME research through the National Institute for Health and Care Research and UK Research and Innovation, compared with £53m for Parkinson’s disease and £22m for multiple sclerosis.
There has been an increase worldwide in research funding for long Covid, including some investments in the UK. As Dr Miller points out, the two conditions overlap considerably. Yet this has been nowhere near sufficient to recover lost ground from decades of underfunding. Since 23 July, 1,400 patients and carers have signed our open letter calling for £100m annual funding for ME and long Covid biomedical research. #ThereForME, a patient and carer-led campaign backed by 18 organisations, is calling for an NHS that’s there for people with ME and long Covid. Our report, drawing on experiences from over 300 people affected, emphasises the need to leverage the UK’s science and technology expertise to accelerate treatments.
