Hope is the biomedical not biopsychosocial approach for ME/CFS
The published article Patients with severe ME/CFS need hope and expert multidisciplinary care by Miller et al. (14 May 2025, BMJ 2025;389:r977) is unhelpful for those suffering from genuine Myalgic Encephalomyelitis (M.E.). We applaud the criticisms this article has received. The authors claim that patients can recover via a biopsychosocial approach yet those patients may not even have M.E. as at least 25 definitions exist, some of which are used for ME/CFS criteria. [1] The term Medically Unexplained Symptoms (MUS) has no place with M.E.: [2] the World Health Organisation has kept M.E. as neurological in its most recent update; [3] in 2015, over 9,000 peer-reviewed papers were used to conclude that ME/CFS is a serious physical disease and not psychological; [4] also, pathology has been found. [5]
In a few weeks’ time, Kumar and Clark’s Clinical Medicine will print its 11th edition. The Grace Charity for M.E. along with other co-signatories has petitioned Elsevier, the book’s publisher, to take ME/CFS out of ‘liaison psychiatry’ and appropriately replace it in neurology and immunity, along with taking out the derogatory character descriptions of ME/CFS sufferers. Over 10,000 signatories support this,[6] some of whom are sufferers who have tried the biopsychosocial approach and were worsened by it, mainly from Graded Exercise.
Lack of improvement for severe M.E. comes not from the patient but rather from the attitudes in healthcare towards these sufferers.
The Miller et al. article mentions the tragic death of Maeve Boothby O’Neill, a severe M.E. sufferer who died from starvation and dehydration. Maeve wanted to live. Her mother at the inquest said that Maeve’s death was ‘wholly preventable’. [7] Similarly, other severe M.E. sufferers have battled with hospitals for adequate hydration and nutrition, [8] prompting a peer-reviewed article reporting delays by the NHS to tube feed M.E. sufferers. These delays caused severe malnutrition to a life-threatening degree. [9]
Why is the outdated biopsychosocial approach still being promoted for ME/CFS? There may be more to this answer than science.
A FOI request revealed that as far back as the early 1990s, a prominent psychiatrist drew the British Government’s attention to the possibility of cost benefits in terms of lower welfare payments if ME/CFS was no longer seen as a neurological illness with possible lifelong disability. [10]
Of course hope is important but it comes from biomedical research, along with very large doses of compassion, kindness and believing the patient.
Yours sincerely,
Catherine and John Ashenfelter
Maidstone, Kent
20 May 2025