https://bibliotheek.ehb.be:2370/content/389/bmj.r977/rr-23
Rapid Response:
ME/CFS care must be grounded in lived experience and biomedical research
Dear Editor
I read with attention the opinion piece by Miller and colleagues “Patients with severe ME/CFS need hope and expert multidisyciplinary care” published on May 14, 2025.
I write as a patient-researcher who has worked on and advocated extensively for chronic diseases such as Long Covid, and for the recognition of patient-led expertise. [e.g. 1] As such, I underline the importance of centering lived experiences in approaching ME/CFS and the extent of biological pathology patients suffer from. These aspects are not adequately addressed in Miller et al, who appear to favour a “biopsychosocial approach”, a “philosophical approach”, and an excessive focus on “mental illness”, where “expectations and conditioned responses” are presented as major drivers of symptoms.
In contrast, there is already significant, and growing, evidence of biological abnormalities discovered in people diagnosed with ME/CFS. Miller et al fall short of discussing such biomedical advances and the need for specialist treatments grounded in this research. Studies have shown immunological, cardiovascular, and neurological damage, or dysfunction, in ME/CFS, to name just a few body systems involved. [e.g. 2, 3, 4, 5] This degree of biological pathology cannot be addressed with approaches such as “psychoeducation about the stress response”, “common cognitive behavioural treatments”, “self-support” and “reframing beliefs about illness”, which seem paramount in Miller et al.
People living with ME/CFS have consistently described the harrowing suffering arising from their disease and the frightening realization no appropriate care is often available to them. [e.g. 6, 7] This is compounded by cases like the tragic death of Maeve Boothby O’Neill from severe ME, where approaches such as “exercise programmes" are reported to have made her worse, while she encountered “ignorance, apathy and stigma”. [7] As noted in many clinical guidelines and recommendations, the cardinal symptom of ME/CFS is PEM (post-exertional malaise), which Miller et al fail to address. PEM is a biological state, where people suffer a worsening of symptoms and clinical signs after even minimal exertion. [e.g. 6, 8, 9] PEM can be highly disabling, leaving patients in need of extensive support from healthcare professionals and carers. People with severe and very severe ME/CFS are especially vulnerable and might be unable to carry out everyday activities, such as walking or feeding themselves. Opinions around “illness belief", the emphasis on gradually “increasing activity”, and a focus on psychological interventions, all highlighted in Miller et al, risk disenfranchising patients from adequate clinical care.
Studies have extensively reported on the low quality of life experienced by ME/CFS patients. [e.g. 10] Further research into the biological underpinnings of ME/CFS is, therefore, highly recommended and should guide clinical practice. People living with ME/CFS deserve the utmost urgency for biomedical research and optimal care. This is where hope lies.
