The Illness That It's OK to Mock

Posted: 12 December 2021

The following is an abbreviated version of a much more detailed blog that can be found HERE. We sincerely appreciate Paul Mc Daid speaking up to raise awareness. ~MEI

Portrait image of Paul McDaid

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 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 myalgic encephalomyelitis (ME). ME patients are sometimes labeled with ‘Chronic Fatigue Syndrome’ or CFS as well as ME/CFS.

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 universally recognized 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 myalgic encephalomyelitis, 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, 26th 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.

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 its reality, and 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 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 as defined by the IOM and the new NICE guidelines. 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/CFS. Some experts believe that the total number of those afflicted with ME & CFS – currently estimated at around 18 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 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 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 whatsoever 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/CFS 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 was upset, as we had been for many years 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 diagnosed with ME/CFS, 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.

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.

Dr Fitzpatrick also 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.’

The position of the ME community in the broader debate is easy to summarise: we know that the mind and body are linked. However, far too much funding has been spent purely on those who study the mind – specifically, a small section of the UK psychological community who ignore biomedical research. Of course, a holistic approach to medicine that includes psychology is the best way to approach any chronic disease. But you can approach holistic medicine by speaking to alternative health practitioners, by going online, and by reading self-help books. When you speak to your doctor or consultant, you want not just holistic advice, but conventional medical advice. If you were suffering from cancer, you would choose to be referred to an oncologist, not a psychologist. If you protested, would that mean you don’t understand that your illness is multi-faceted, with a psychological component? Of course not. But this is the ridiculous situation ME patients find themselves in when they ask that biomedical researchers have their research applications approved. Dr Fitzpatrick says however, that by ‘repudiating any recognition of psychological factors… ME advocates implicitly endorse stigmatisation of mental health disorders.’ Wait a minute – because we want a scintilla of biomedical funding in this field, we are guilty of undermining a separate group of illnesses that bear little resemblance to our own? As someone who has suffered from depression, and who has lost a close friend to suicide, I wholeheartedly reject any notion that we have stigmatised mental health disorders in any way. This is the kind of slanderous nonsense that we have to deal with on a constant basis.

In 2017, after years of lobbying by the ME community, NICE announced that they were going to revisit their guidelines on the use of GET for ME/CFS. In November of last year, the draft guidelines were published. After three years spent scrutinising 1,500 peer reviewed scientific studies, a judgement call was made. There was no ambiguity. The draft guidelines stated that “there is NO evidence to support the use of GET as a treatment for ME/CFS, and due to reported harms from the ME community… it should not be offered as a treatment for this illness.” The guidelines continued, “There is no evidence that CBT is a cure for ME/CFS, and it should only be offered as a supportive therapy.” Everything that campaigners had been saying for decades finally had the support of the highest medical research authority in the land. Then of course, came the twist.

The day before the guidelines were due to be published in August, the Royal College of Physicians and the Royal College of Psychiatrists announced that they would be telling their members not to follow the guidelines. In effect, the revision of the guidelines was being blocked. NICE had no choice but to ‘pause’ the publication. Since its inception, the purpose of NICE was to dispassionately, objectively review all scientific evidence and advise practitioners on what therapies and protocols were safe and effective. They had never been challenged, undermined, or blocked in this way. Dr Andrew Goddard, president of the Royal College of Physicians said in an interview with The Guardian, ‘GET is not without some risk, but benefits quite a lot of people.’ Technically speaking, you could say the same thing about thalidomide. The devil was in the details. What was the scale of the risk? What was the scale of the benefit? Repeated patient surveys from all across Europe had shown that the majority of those who undertook GET deteriorated, whilst only a small minority reported an improvement. Such a woolly, nebulous statement from a man of his office was shocking.

In the end, after a roundtable discussion with all the concerned parties on October 19th, NICE opted to go ahead with publication of the new guidelines, despite the disgruntled Royal Colleges. It was a huge victory and vindication for ME patients. It underlined the fact that science is on the side of ME advocates, and ME advocates are on the side of science. Those who attacked us for lobbying were in fact themselves the poorly informed harassers. None of this could have happened if we had not rattled the cage. But this is just the beginning for us. This is just common sense prevailing – protecting patients from a dangerous therapy that is more likely to harm them than help them. Decades of lobbying just to get to this point, and always, always swimming against the tide.

The UK psychiatrists in question have not given up, already publishing a paper and an article in the Daily Mail defending their ideas. Brian Hughes, a professor of psychology at the National University of Ireland in Galway, and author of ‘Psychology in Crisis’, believes they are suffering from denial and cognitive dissonance. They are unable to let go of therapies that they developed themselves, based on theories that they developed themselves, despite the fact that they have now been completely discredited. And so, the fight will continue. We don’t want to fight. We are exhausted, and want to get on with our lives. LINK

The Dalai Lama once said that anger is never justified, but righteous indignation is sometimes necessary to remove injustice. Amaritya Sen, the Indian Nobel prize winning economist famously said that human beings have no definition for ‘justice’. Instead, he said, we must simply seek out injustice and remove it wherever we find it. That is all the ME community have ever tried to do. It’s hard to know how to react when I read articles like Dr Fitzpatrick’s.

Should I just ignore it, and get on with my life, for the sake of my mental health and happiness? That is the advice of ME ‘activists’. Don’t get upset, don’t engage, lest you be branded a psychology denier and accused of online harassment. This is usually my approach. But then sometimes something in me snaps, and I think: if we don’t fight, nothing is going to change. Does this make me a militant? Actually, yes. Perhaps it does. Maybe I can give him that one. I have been recently converted.

@paulthedaid

ME International’s position is that myalgic encephalomyelitis is a complex, acquired multisystemic disease apart from CFS and ME/CFS, that all patients need to be screened for ME in accordance with the IC Primer, and all research labeled “ME” use the ICC.

Previous Comments

ALICIA BUTCHER EHRHARDT – 12/16/2021 06:00:44 am
Well said: in no other illness is the patient shamed because they are accused of somehow encouraging the state of being sick, and not cooperating with ‘treatments’ which make them worse!
It is called gaslighting. It is an attempt to protect incompetent practitioners who don’t help, their reputations, and their funding. Shame on them.

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