Maeve Boothby-O’Neill’s harrowing case highlights clashing NHS narratives on ME | Alastair Miller

The tragic case of Maeve Boothby-O’Neill, being widely reported from the inquest in Exeter, generates more questions than answers about the management of patients with myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS).

Having been involved in the diagnosis and management of this condition since the mid 1980s, I know of no other disease that provokes such controversy – pitting clinicians, researchers and patients against one another rather than in support.

The main symptoms are well established. These consist of chronic, debilitating, unexplained fatigue, muscular aching (myalgia), light-headedness/dizziness (often known as postural symptoms), difficulties of thought, reasoning and memory (often known as cognitive problems or “brain fog”) and post-exertional malaise (often called “payback”).

The diagnosis can be made relatively easily by taking a structured history from a patient and doing a few tests to exclude conditions that may produce similar symptoms. However, there remains no consistent laboratory test or imaging (scan), known as a “biomarker”, that will definitively establish or exclude a diagnosis of ME/CFS. Although some abnormal tests are more common in ME/CFS patients than in matched controls, because there is no definite confirmatory test, in this respect the condition differs greatly from diseases such as HIV infection or multiple sclerosis.

Nor can we point to a definitive mechanism to account for the mix of symptoms. Numerous possible causes have been suggested, including chronic infections, abnormalities of the immune or endocrine systems, problems with the autonomic nervous system, psychological issues and more. Yet despite years of well-funded research, we do not yet have the unifying biomedical explanation of the symptoms that patients so desperately want.

With no test or effective drug treatment, the main management is patient-focused empathy, careful clinical diagnosis followed by advice on lifestyle changes that may improve symptoms. Without a clear pathology, ME/CFS is defined by its symptoms. There is no such thing as “asymptomatic ME/CFS”.

Given this, it was perhaps sadly inevitable that some people would question whether ME/CFS was a “real disease” or was “all in the mind”. Indeed, the original description of ME at the Royal Free hospital in 1955 was attributed to mass hysteria. Some years later, it was disparagingly known as “yuppie flu”. Sadly, it is this conflict between those who think that ME/CFS is a purely psychological condition, with no biomedical basis, and those who believe it is a purely physical condition, with no psychological implications, that has dominated the narrative around this illness.

In mainstream ME/CFS clinics where I’ve worked in the NHS, the conversation is completely different. I know of no colleagues who hold the view that ME/CFS is “all in the mind”. It is just that we currently cannot yet identify a mechanism. Not surprisingly the highly unpleasant and debilitating symptoms are often exacerbated by associated depression and anxiety, and therefore many patients benefit from appropriate psychological interventions such as cognitive behaviour therapy (CBT).

It is also clear to doctors in the field that the individuals who recover best from ME/CFS are those who steer a “middle road” between excess physical activity and excess rest. Patients can’t exercise their way out of the illness but neither will total inactivity deliver recovery. The fact that we use CBT and other behavioural approaches in no way implies that we do not believe this is a physical condition. After all, we use CBT and rehabilitation to relieve symptoms in cancer, in rheumatoid arthritis and following heart attacks. Nobody has ever suggested that those conditions are “all in the mind”.

The inquest in this tragic case may lead some to overly pessimistic conclusions, such as “nobody ever recovers from ME”. However, with appropriate support and intervention many patients will make a full recovery. A rough rule of thumb from clinical experience is that about one-third of patients will make a full recovery, ­one-third a partial recovery and one-third will remain at baseline or deteriorate.

What doctors working on this condition all agree on is that the NHS needs more rapid access to multidisciplinary clinics where the diagnosis can be confirmed and appropriate lifestyle advice and support initiated and maintained. Thankfully, it is extremely unusual for patients to need inpatient hospital care, and while the symptoms can be intensely distressing and potentially life-changing, they are very rarely fatal. With the advent of “long Covid”, it was to be hoped that such clinics would flourish.

Although a few cases of long Covid are caused by definite end organ damage (to lungs, kidneys, heart, etc), it is quite clear that the vast majority are post-viral ME/CFS and should be treated as such.

We need a new conversation about ME/CFS. One that puts aside polarising narratives, accepts that doctors and researchers are trying to do their best and open up a space for discussion about all possible causes and treatments. This would benefit the patients and could be a positive legacy of this tragic case.