The illness that it is ok to mock

 by Paul Mc Daid (@paulthedaid)

Every so often, something strange occurs in the British press. An offensive article is published about patients who suffer from a well known chronic disease. Sometimes it is written by an esteemed researcher or physician, at other times by a respected journalist. There is no backlash or ruckus kicked up; it just happens, is accepted, and the world moves on. Heads don’t roll, regardless of any inaccuracies in the piece. If any complaints are made through the appropriate channels, a worryingly large section of the establishment rapidly closes ranks around the writer. The perpetrator of what is effectively a hate crime, becomes the victim. 

The illness in question is ME, sometimes referred to as ‘Chronic Fatigue Syndrome’ or CFS (ME/CFS is the most commonly used appellation. I will mostly use ME hereinafter). The arguments contained in such articles are often scurrilous and baseless, and are calmly refuted by ME charities and patient groups. But similar articles stubbornly return like summer flies to be swatted away. Efforts to repudiate the stories continue, based on rational lines of thought and scientifically legitimate evidence. But patients and charities are mocked, jeered at, and accused of harassment simply because they lobby for truth and justice. I doubt this would happen in any other disease. So why does it happen to us?

Patients with ME are in the unenviable position of suffering from a disease that has no complete explanation, and no treatment. Usually, the traditional solution begins with allocating levels of funding to study the disease commensurate with the suffering caused and incidence of the illness in the population. However, according to charities and patient groups, in the case of ME/CFS, funding falls pitifully short when compared to other similar illnesses. What is perhaps worse however, is that most of the funding is siphoned away by a small group of psychiatrists and psychologists who promulgate a psychosomatic theory of the disease that has been disproven many times over, but who also enjoy a disproportionate amount of influence within the British medical establishment and media. Their work has come in for fierce criticism from academics right around the globe, who say their studies and theories do not stand up to basic scientific scrutiny. When any patients complain however, they are branded as militants, activists, or worse – mental health deniers. The latter argument is particularly powerful and seductive, and consciously or unconsciously, deploying it allows the psychologists in question to behave more or less with scientific impunity.

A few weeks ago, The Telegraph published an article by a regular GP columnist (How I became a target for the ME Militants, Dr Michael Fitzpatrick, 26^th Sept), which raked over the old, tired accusations once again. The article suggests that ME patients don’t understand that psychology plays a role in their illness and instead have a ‘fixation with the minutiae of immunology.’ Well, no. Patients are in fact fixated with getting better, that is all. And, based on the best available science, immunology is one route we could follow to develop better understanding and treatment of this disease. Immunological studies in the USA and elsewhere have shown – since the 1980s in fact – huge abnormalities in ME patients that could account for the spectrum of immunological symptoms reported. Inflammation is seen in neuroimaging studies, and impaired metabolism and energy production have been clearly demonstrated in the laboratory. It is thought that the immune system is somehow blocking cellular metabolism, leading to the most well-known symptom of crushing physical and cognitive exhaustion. But in the British media, the idea that ME patients might wish to investigate immune system abnormalities is something to poke fun at apparently. Because the old story goes that we simply don’t grasp the fact that the human body is complicated, and the mind and body are connected. We want to focus only on the body, and not the mind, say the accusers. The mind and body are connected? Really?

This is something that we already knew, and have always been on board with. It has never been the crux of the argument. As my own consultant, a respected Harley Street infectious diseases practitioner, puts it: ‘Your grandmother could tell you that if you stress an animal out it will get sick.’ The first thing he ever suggested I do when I met him was to meditate. The mind-body connection is something any enlightened physician or patient understands. It is a truth so obvious that it barely needs to be discussed. It is known technically as the biopsychosocial (BPS) theory of disease, and the ME lobby are time and time again accused of being cave-dwellers who deny it’s reality, and who are afraid of the stigma of mental health playing any role in their illness. As such, the narrative suggests, we angrily reject any involvement of psychology in the battle to understand this complex disorder. Nothing could be further from the truth.

Virtually every ME patient I know is aware that their psychological state may have affected how they became ill, and affects their condition on an ongoing basis. Psychological intervention is usually welcomed by all. Further, since inflammation of the brain is suspected in this disease, more serious psychiatric symptoms also play a major role. It is not psychology or psychiatry we are at war with – it is a very small group of researchers who have an appalling approach to scientific methodology and medical ethics.

This political friction surrounding the management of ME/CFS dates back at least four decades, but is arguably more important now than ever before. Since the Covid pandemic began, roughly 5% of those infected with SARS-CoV-2 have gone on to develop lasting symptoms, that have identical properties to those seen in ME/CFS. This has led many Covid researchers around the world, including Dr Anthony Fauci, to conclude that at least a subset of these ‘Long Covid’ patients are in fact now suffering from ME. Some experts believe that the total number of those afflicted with ME – currently estimated at around18 million globally – may triple as a result of Covid. Clearly, it is about time we resolved any lingering questions that surround how best to manage the disease, using the limited information we have at our disposal.

In his article in the Telegraph, this is opposite of what Dr Michael Fitzpatrick endeavours to do, instead choosing to muddy the waters by dragging up old, out of date ideas and accusations. The thrust of the article concerns a recent debate about the treatment of ME/CFS patients in the UK, that the author says bears a ‘striking resemblance’ to one that he became embroiled in himself two decades ago. At that time, he penned an offensive Op-Ed in the British Medical Journal expressing that in his considered opinion ME patients simply don’t grasp the fact that psychology and medicine overlap. But the current debate Michael Fitzpatrick is referring to in The Telegraph bears no resemblance to anything that was being discussed twenty years ago.

The recent disagreement surrounds the publication of new guidelines by the National Institute for Health and Care Excellence (NICE) on the best way to manage ME in the UK. NICE were due to publish new, updated guidelines in August after a three year review, but at the last minute were blocked by a small group of influential establishment figures. No-one has ever prevented NICE from publishing guidelines before – it was an utterly unprecedented occurrence. The ME community were upset, as for many years we had been attempting to overhaul the current treatment options for ME, based on patient experiences and new evidence. The existing NICE guidelines stated that a form of physiotherapy known as Graded Exercise Therapy, or GET should be offered by GPs and physios to anyone with ME, based on research carried out by psychologists. However, patients have long claimed that this therapy is not only ineffective – but it actively makes them worse. GET has been the main form of treatment in the UK for decades, based on the psychosomatic model of the disease that has always been controversial. But as time passed, worrying reports began to emerge, suggesting not only were the therapies ineffective, but they were harmful. Most patients who underwent GET programs were getting worse, they said. Sometimes severely worse, and sometimes permanently.

How did these ideas come about in the first place? The UK psychologists and psychiatrists who have taken an interest in ME/CFS are often collectively entitled the ‘Wessely School’, after Professor Sir Simon Wessely, who first suggested the use of GET and Cognitive Behavioural Therapy (CBT) in a 1989 paper. In this now seminal study, he sets out his hypothesis for the disease: patients fall ill with a virus and suffer from fatigue, then recover. But the trauma of the illness means that patients develop a ‘fear of recovery’ and begin to entertain ‘false illness beliefs,’ due to symptoms which actually come from their anxieties. They then subconsciously employ ‘exercise avoidance strategies’ and confine themselves to bed whereupon their muscles decondition. After this, patients enter into a ‘feedback loop of negative thinking,’ which causes their fatigue to worsen. These are direct quotes. It is, the paper suggests, a self-propagating phenomenon. Since there is no biological impediment to recovery, the negative thinking loop can therefore be broken by therapy, and a patient can be restored to full health with physiotherapy.

This hypothesis was never evidence-based, and sounded fanciful to begin with. It could not account for the majority of the symptoms, the severity of the illness, the three-to-one female to male ratio, the sudden and aggressive onset, and the lack of correlation with pre-existing mental health and psychological problems. But now, the theory has been repudiated by decades of biomedical research, and a complete failure on behalf of the Wessely School to demonstrate that their techniques actually help patients. Moreover, since the onset of Long Covid, patients in their millions are reporting identical symptoms, strengthening the argument that ME is a post viral immune system disorder.  Nevertheless, the psychosomatic paradigm persists, for several reasons. It was always cheaper to fund psychological studies than drug trials, and so a tidal wave of papers from the Wessely School followed the first publication. Sadly, they all suffered from the same scientific flaws. The results were predictable before the studies even began.

Dr Fitzpatrick bemoans the fact that NICE wanted to change their guidelines based on ‘scientific evidence’ (the inverted commas in this case, are his, and not mine), and have been bullied into this position by ‘ME militants’. The ‘evidence’ however, is not quack science that comes only from the ME lobby. It is evidence from Harvard, Columbia, Stanford, and similarly respected research centers. The evidence has now been studied very closely by independent and highly experience men and women at NICE for three years. I have never heard a doctor sneering at the idea of evidence before. It is one thing for scientists and doctors to disagree about the interpretation of evidence. But this is the first time I have heard a physician dismiss the concept of evidence so disdainfully.

He dismissively describes ME as a disease which causes ‘extreme tiredness and generally feeling unwell.’ This is probably the most inaccurate and trivialising description of the illness I have ever come across. Alas, none of this humiliation is new. There is a lengthy history of journalists attacking ME patients, and spreading misinformation about the illness and the behaviour of campaigners. Rod Liddle, who had once previously labelled ME sufferers ‘pretend disabled’, wrote in the Times in 2015: ‘They are hopping up and down with rage over at the ME association… At least they would be if they could. As it is, they are probably sitting quite still.’ He went on, ‘No matter what evidence is marshalled by the likes of Simon Wessely, some sufferers cling with grim and livid determination to a non-existent biomedical explanation.’ Mr Liddle has had a bee in his bonnet for a while about this illness, and has further smeared patients elsewhere. Describing the fervour with which ME patients have to protest and fight to gain access to medical treatment, he saw fit to opine in The Spectator magazine: ‘When it is finally proven that ME is a mental health disorder, I am convinced that it will be the least of their problems.’ 

This is part one of a longer blog entry, which will be continued soon.

@paulthedaid