The illness that it is ok to mock (Part II)

 by Paul Mc Daid (@paulthedaid)

This is the second entry of a longer blog piece. Please see Part one for full context. 

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 in ME – 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.

Even though the mind and body are connected, in practice, medicine is compartmentalised. It is the only way to provide diagnosis, management and care to patients. When you enter a hospital, you turn left for neurology, right for cardiology, or go straight ahead for… You get the idea. When an ambulance arrives in casualty with an individual on a stretcher, action is taken. The patient is taken to surgery, to imaging, to cardiology, or to the appropriate ward. Surgeons and consultants do not stand around discussing the philosophical nature of cartesian dualism and the impact of the mind on the body. There is a time and a place for holistic thinking, and there is a time for action. This perhaps, is the crux of the schism – ME patients want their disease to be treated like any other, and for biomedical action to be taken. According to the best available science, psychology does not play a larger role in this disease than in any other. And that is a problem, because the lion’s share of the funding goes, every single year to a small group who Dr Fitzpatrick refers to as ‘the leading doctors in the field,’ and ‘the very men and women who are trying to help us.’  We fully accept and welcome psychological support, but we want it in proportion, and alongside other forms of medical funding.

The research published by the Wessely School that has defined the narrative surrounding this disease is staggeringly flawed. The general consensus is that results have been exaggerated, thereby wildly skewing the argument. This has two main outcomes – firstly, funding and attention are drawn away from biomedical research; and secondly, treatments that are declared as safe and effective may in fact be neither.

The most notorious example of course, is the now infamous PACE trial, which was described by MP Caroline Monaghan in a recent Parliamentary debate as ‘the biggest medical scandal of the 21st-century’. Criticism does not come from within the ME lobby alone. Even the UK psychological community are appalled at what they see as scientists dragging British psychology into disrepute. David F. Marks, editor of the Journal of Health Psychology, called the PACE trial ‘a text book example of bad science.’ Bruce Levin, a respected Columbia statistician called the PACE trial ‘the height of clinical amateurism.’ David Tuller, a Berkely lecturer in Journalism and Public Health described the study as ‘a sham; a fraud.’ Similar quotes from esteemed academics around the world form a landslide when one begins to pull at any loose thread of this argument. And yet, this is the study that has formed the backbone of orthodox treatment for ME in the UK for over a decade. These are the leading doctors in the field who Michael Fitzpatrick refers to in the Telegraph. A similar, but still ongoing, saga is a study named FITNET, led by Esther Crawley at Bristol University. In my own personal opinion, FITNET is even more flawed and disingenuous than the PACE trial. Esther Crawley has recently been awarded a £1.6m grant to study GET and CBT in children with Long Covid. Biomedical funding into Long Covid research has been given peanuts by comparison.

In February of 2015 the Institute of Medicine in the USA published a report entitled Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. The reports states that ME/CFS ” is a medical – not a psychiatric or psychological – illness”, and goes on to say that “This disease is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort.” Compare this to Michael Fitzpatrick’s withering definition. It was a breakthrough in many was for the community to have such an influential body put down in print that the disease was even real. We were being recognised for the first time. The momentum was felt across the Atlantic. In 2017, 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 it’s its inception, the purpose of NICE has been to dispassionately and objectively review all scientific evidence and advise practitioners on what therapies and protocols are 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 2019, Dr Keith Geraghty of the University of Manchester published a paper that compared all available studies on the efficacy of GET and CBT (n=1,428) with all the available feedback surveys (n=16,665) from patients who had been given the therapies. To anyone who isn’t already initiate in this area, the results make for eye watering reading. Whilst the PACE trial found that GET helped between 8% – 22% of patients (depending on whose statistical analysis you believe), 55% –74% of those polled reported that Graded Exercise Therapy had made them worse. This was already well known in the ME community. But now that NICE had reviewed all the available evidence, their judgement was clear. Of all the studies that they looked at in favour of GET, totalling more than 250, the quality of evidence was categorised as either ‘low quality’ or ‘very low quality.’ Brian Hughes, professor of psychology at the National University of Ireland in Galway, and author of ‘Psychology in Crisis’ is a well known critic of the Wessely school. In a recent blog post he described the NICE evidence review as a ‘bloodbath’. However, as if ignoring the idea that a therapy might make you worse, Dr Alastair Miller, an adviser to the NICE panel and an advocate of Graded Exercise Therapy said ‘since there are no new therapies, there is no need to change the guidelines.’ In other words, a treatment that has been shown to be harmful is better than no treatment. Jesus wept.

I’m sure Dr Fitzpatrick is a nice person. He is the symptom after all, not the problem. But I believe he has harmed and offended thousands of people. Was my suffering worsened upon reading this article? Absolutely. I was devastated and deflated. The hope that keeps me going every day took a hammering. I’m sure that was the same for many. There is also clear evidence that this practitioner represents a danger to the many ME and Long Covid patients that he is likely to encounter in daily practice. He is determined that they have psychiatric problems that there is no evidence that they have. He is determined that they should be given therapies that have been shown to be harmful. He scoffs at the idea of evidence, and has clearly ignored the development of biomedical understanding in this field over the last two decades.

Confronting the establishment is an exhausting, quixotic task for a chronically ill patient. Like the looming presence Wordsworth describes in his poem The Prelude we exist perennially in the umbra of a twisted and outdated paradigm, that has the disturbing quality of shifting its form when challenged or scrutinised from any angle. It defiantly resists the passage of time, and self-righteously claims it is built upon logic and reason, despite failing every scientific test and refusing to answer grown up questions put by reasonable men and women. Occasionally, when we diligently chip away at it, it seems to lessen in size, and the shadow shrinks, allowing a chink of light and a ray of hope to pass. At other times, like the publishing of Dr Fitzpatrick’s article, or the blockage of the NICE guideline publication, it rears up and doubles in size, making us feel that we are back to square one. Who are we, anyway, the patients caught in the middle of this nonsense? We feel voiceless. We are at times made to feel outcast, maligned and despised.

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 Wessely school have not given up, already publishing a paper and an article in the Daily Mail defending their ideas. Professor Brian Hughes 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.

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 am recently converted.

@paulthedaid