TThe tragic case of Maeve Boothby-O’Neill, widely reported at the Exeter inquest, raises more questions than answers about the treatment of patients with myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS).
I have been involved in the diagnosis and treatment of this condition since the mid-1980s and know of no other disease that generates so much controversy, pitting clinicians, researchers and patients against each other rather than supporting each other.
The main symptoms are well known. These include chronic, debilitating, unexplained fatigue, muscle pain (myalgia), dizziness/lightheadedness (often known as postural symptoms), difficulties with thinking, reasoning and memory (often known as cognitive problems or “brain fog”) and post-exertional malaise (often called “payback”).
Diagnosis can be made relatively easily by taking a structured history from a patient and performing a few tests to rule out conditions that can cause similar symptoms. However, there is still no consistent laboratory test or imaging (scan), known as a “biomarker,” that will definitively establish or rule out a diagnosis of ME/CFS. Although some abnormal tests are more common in ME/CFS patients than in matched controls because there is no definitive confirmatory test, the condition is very different in this respect from diseases such as HIV infection or multiple sclerosis.
Nor can we point to a definitive mechanism to explain the mix of symptoms. Numerous possible causes have been proposed, including chronic infections, abnormalities of the immune or endocrine systems, autonomic nervous system problems, psychological problems, and more. But despite years of well-funded research, we still do not have the unifying biomedical explanation for the symptoms that patients so desperately want.
Without testing or effective drug therapy, the most important management is patient-centered empathy, careful clinical diagnosis followed by advice on lifestyle changes that may improve symptoms. Without a clear pathology, ME/CFS is defined by the symptoms. There is no such thing as “asymptomatic ME/CFS.”
Given this, it was perhaps unfortunately inevitable that some people would question whether ME/CFS was a “real illness” or “all in the head”. The original description of ME at the Royal Free in 1955 was attributed to mass hysteria. A few years later it was disparagingly referred to as “yuppie flu”. Unfortunately, it is this conflict between those who believe that ME/CFS is a purely psychological condition, with no biomedical basis, and those who believe that 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 have worked in the NHS, the conversation is very different. I don’t know of any colleagues who believe that ME/CFS is “all in the head”. It’s just that we can’t yet identify a mechanism. Not surprisingly, the very unpleasant and debilitating symptoms are often compounded by associated depression and anxiety, and so many patients benefit from appropriate psychological interventions such as cognitive behavioural therapy (CBT).
It is also clear to clinicians in the field that the individuals who recover best from ME/CFS are those who walk a “middle path” between excessive physical activity and excessive rest. Patients cannot exercise their way out of the disease, but total inactivity will not lead to recovery either. The fact that we use CBT and other behavioral approaches does not in any way imply 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 after heart attacks. No one has ever suggested that these conditions are “all in the head.”
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The research into this tragic case may lead some to draw overly pessimistic conclusions, such as “no one ever recovers from ME”. However, with the right support and intervention, many patients will make a full recovery. A rule of thumb from clinical experience is that approximately one third of patients make a full recovery, one third make a partial recovery, and one third remain at baseline or deteriorate.
What clinicians working with 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 can be initiated and maintained. Fortunately, it is extremely unusual for patients to require hospital care, and although the symptoms can be intensely distressing and potentially life-changing, they are very rarely fatal. With the advent of “long Covid” it was hoped that such clinics would flourish.
While a few cases of long Covid are caused by obvious end-organ damage (to the lungs, kidneys, heart, etc.), it is 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 sets aside polarizing narratives, accepts that doctors and researchers are doing their best, and allows for discussion of all possible causes and treatments. This would benefit patients and could be a positive legacy of this tragic case.