The Chronic Failure to Tackle ME / CFS
“Morphology. Longevity. Incept dates …”
Roy Batty, the synthetic human in the film Blade Runner, is in decline and needs answers fast. In his search for a solution to a capped lifespan, he has grown expert in the facts of his own biology. During five years with a mystery illness, I came to identify with the Batty character and his quest for more life.
In a climactic scene, Batty, played brilliantly by Rutger Hauer, tracks down the head of the corporation that produced him, Tyrell, who deftly parries his arcane suggestions.
“… A coding sequence cannot be revised once it’s established …” says Tyrell.
Batty meets his maker
“What about EMS-3 recombination?”
“We've already tried it …”
“A repressor protein, that would block the operating cells?” ventures Batty.
“The newly formed DNA strand carries with it a mutation, and you've got a virus again.”
I feel like this whenever I visit my GP with a head full of leads culled from the net. “What about the Krebs cycle … mitochondria … XMRV … the HPA axis?”
“You were made as well as we could make you,” concludes Tyrell, cutting his creation adrift.
“We've done everything we can for you,” says my doctor, cutting our last remaining connection, the sick notes he now refuses.
At this point in the film, Batty crushes Tyrell’s skull with superhuman strength. I can’t match that sort of energy, even if I wanted to (and I do). Instead, I muster a rant that invokes the Hippocratic oath and inform the waiting room that GPs do nothing for people with ME. I storm out and retire to bed for the inevitable crash. A few days later a letter arrives to say I will no longer be treated by the practice. For several years, though, I had merely been managed.
GPs can resent patients who come before them with a little knowledge downloaded from the net into otherwise untrained heads. But, after years of my frustrated dealings, I view them not so very differently. Doctors consistently behaved towards me as little more than medical functionaries, the deadened extremities of a bureaucratic limb, adapted to sift rapidly through a daily cavalcade of patients. I was getting nowhere. Like the doomed Batty in Blade Runner, I was forced to my own desperate medical research.
My symptoms came on gradually over several years until they reached a level where I realised I was simply sick. This was 2006, the same year that a coroner, for the first time in the UK, ruled that ME had been a cause of death. Sophia Mirza, a 32-year-old sufferer from Brighton, had been sectioned for 13 days after a psychiatrist insisted she was either pretending or mentally ill. After this trauma she and her carer mother resolved never to bother doctors again. A post-mortem revealed an inflamed spinal cord and abnormalities in three quarters of her sensory cells. The coroner ruled that she had died from “acute renal failure as a result of chronic fatigue syndrome”.
By the time I started calling my mystery malaise “chronic fatigue”, I had faith that my local GPs would be up to speed and investigate in their usual conscientious manner. My symptoms were by then enough to keep me from work. They included fatigue, impaired concentration, headaches, dizziness, slurring of words, irritable bowel, vision disturbances, and strange facial sensations. Over the years of subsequent consultations, the only investigations that were conducted were the usual blood tests, and as is almost always the case with ME sufferers, they found nothing of note. Meanwhile, quality of life declined so far that, for several years, crawling into unconsciousness each evening became the highlight of my day. And if doctors don’t get it, you can bet some friends and family won’t either. They might ask when you’re getting a job, but rarely how you are.
Despite the GP horror stories on ME support sites, I guilelessly continued to present to my doctor every couple of months with a worrying symptom or hopeful new idea about treatment. Each time I found my usually receptive and understanding GP behaving like a cross between a lawyer and a politician, by turns adversarial and placating. Doubly punchable, some might say. I thought of the George Bernard Shaw dictum, “Every profession is a conspiracy against the laity,” from The Doctor’s Dilemma, a play that touched on mutilations of medical truth and patients for profit.
One doctor ventured there may be a psychological element. Knowing myself well, and wondering about the lack of proper engagement with my symptoms, I was astounded and insulted. But, eventually I agreed to a “review” in an effort to close that line of inquiry. Despite my deepening frustrations, the psychologist found no budding insanity or creeping murderous tendencies. My GP was at a loss, advising me to “pursue my healthcare elsewhere”.
I was by now already swimming freely in the uncharted waters of complementary therapy and consulting with a naturopath. It was a revelation. She acted with me collaboratively and, along with a persuasive, enlightening way of looking holistically at health, with real, actual compassion. I garnered the moral support to take responsibility for my own recovery, with or without help from the mainstream, which, if truth be told, only sought to patronisingly reassure my silly little head that I was right as rain. My treatment centred around a dietary and supplement regimen: “Let food be your medicine and medicine be your food” said the same Hippocrates whose oath all doctors take, though, presently, this particular piece of timeworn advice they overlook and undersell. “Let refined chemical products be your medicine and GlaxoSmithKline your patron,” is perhaps more apt.
While on a trip to Australia I consulted with a recommended doctor turned nutritional medicine practitioner. After extensive specialist tests she diagnosed me with an array of issues, including intestinal parasites and dysbiosis, pancreatic dysfunction, and food allergies. I presented the results to my local GP who conceded disinterestedly, “They’re above my head.” This was bizarre. I wondered if I had been labelled a hypochondriac or somesuch and paid to see my medical records. I discovered that for this last consultation, where I had provided scientific evidence of my illness, my GP had simply written, “[I] still feel it is his perception of health that is a problem”. I suppose that’s true, in an eastern, new-agey kind of way; if I could just believe myself healthy, with enough conviction, I would surely be able to reorder myself at the cellular level and become a kind of master of matter. I sense, though, that this was not what she meant.
It is only in researching this article that I have come to understand the puzzling way my GPs have behaved, how they could allow persistent, debilitating symptoms to go untreated and largely uninvestigated, how they could so quickly, and to my mind for no reason, move to the psychological explanation and remain there in the face of laboratory evidence presented to them, how they could so easily encourage me to pursue my healthcare elsewhere, and, despite all this, confidently claim they had done everything they could, strike me from their list, and guiltlessly stroll out to their BMWs at the end of the day feeling esteemed pillars of the community.
The orthodoxy which informs GPs has stalled between acknowledging the serious physical nature of ME and actually doing something about it. The UK ostensibly accepts the World Health Organisation’s classification of the illness as a disease of the nervous system, and NICE guidelines state it can be as disabling as multiple sclerosis and rheumatoid arthritis. The condition is more prevalent in the UK than AIDS and both lung and breast cancer. However, the vast majority of investment into ME by the Medical Research Council (MRC) continues to go into psychologically based therapies, with nothing awarded to biomedical research.
As recently as 2005, the MRC puzzlingly, some say scandalously, began the recently concluded, highly controversial PACE trial on psychologically based therapies which cost taxpayers around £5m. Twelve ME centres, which likewise propound the psychosocial model, have also been established to the tune of £8m. Yet, research already undermines this approach, as illustrated in the case of graded exercise therapy which is shown to worsen the condition in 50% of patients. Aerobic exercise continues to be pushed upon the sick despite being contra-indicated in cases of inflamed and damaged tissues. Dr Paul Cheney, a pioneering clinical researcher into the condition expands: “If you have a defect in mitochondrial function and you push the mitochondria by exercise, you kill the DNA".
The tone for ME treatment in the UK is set by a controversial group of psychiatrists headed by Simon Wessely of the Institute of Psychiatry, Kings College London. Critics have levelled some extreme accusations at the Wessely School, recently responsible for conducting the PACE trial, most notably that they are producing policy-based evidence for NICE, as an aid to government efforts to reduce sickness benefits. Malcolm Hooper, emeritus professor of medicinal chemistry at the University of Sunderland, wrote in Magical Medicine: How to Make a Disease Disappear, his 442-page critique of PACE, that there is “rightful objection … to behavioural modification as the sole management strategy for … ME/CFS [which] is believed to be based on (i) the commercial interests of the medical and permanent health insurance industry for which many members of the Wessely School work and (ii) the dissemination of misinformation about ME/CFS by the Wessely School, whose members also act as advisors to UK Government agencies including the DWP, which it is understood has specifically targeted ‘CFS/ME’ as a disorder for which certain State benefits should not be available.” I don’t know if such an analysis is true. But I do know that I have been seriously physically unwell, that I have not received the medical help I would expect, and that I have continuously been denied rightful benefits. And mine is far from an isolated case.
“Perform the minimum number of investigations,” advises the Wessely School’s 1996 Joint Royal Colleges Report on CFS / ME. “Provide appropriate and unambiguous reassurance when there is no evidence of relevant physical pathology,” which of course there isn’t going to be if you don’t run sufficient tests. Wessely is on record saying, "Perpetuating factors include ... illness beliefs and fears about symptoms, symptom focusing, and emotional states.” Any sick person, of course, might naturally share these very same “perpetuating factors”. Additionally, these “factors” will actually be exacerbated if your doctor effectively abandons you by behaving as a Kafkaesque apparatchik.
After examining Wessely School guidelines I began to better understand the strange, worrying psychological traits displayed by my doctors. I spotted phrases written in my medical records that seemed “right out of the manual”, such as, “I feel it is his perception of health that is the problem”, “somatisation likely” (ie. it’s all in my head), and the classic “patient was reassured”. Yes, such phrasing bore all the hallmarks of the condition I’ve come to term Wesselyan Functionary Syndrome (WFS), the sudden displacement of a complex empirical mind-set in highly trained medical practitioners by a disabling robotic adherence to crude psychiatric dogma. Some say it passes between practitioners like a virus. Others suspect this Wessely individual of just making it all up, a fantasy manufactured in response to the fear of going out into the world and earning an honest living like everyone else.
With inexplicable certainty, Wessely states, “There lies at the heart of CFS not a virus [or] immune disorder, but a distortion of the doctor-patient relationship". In such statements is writ the fate of ME sufferers in the UK, and certainly also the origin of the distorted doctor-patient relationship I have endured. Wessely, not surprisingly, has become a figure of loathing to those ME sufferers with the mental energy to research the political backdrop to their illness.
Psychiatrists “reassure” overworked GPs that ME is psychosocial, or should at least be treated psychosocially, that they need not look too hard for evidence of physical illness. Then, doctors “reassure” their patients not to believe the evidence of their failing bodies, and that they should grit their teeth, retrain their minds, and reality will naturally conform. Success at each stage, it is believed, lies simply in putting on the right show for each audience. It’s a confidence trick, and one whose time is coming to an end.
According to Anthony Komaroff MD, a professor of medicine at Harvard Medical School who has for many years conducted research into the condition, “[T]here is now abundant evidence of measurable abnormalities in the central nervous system and the autonomic nervous system in people with this illness. That makes it neurological.” And, since November 2010, in the light of research linking the XMRV retrovirus with ME, those with the condition in the UK have been banned from making blood donations. Similar measures have also been adopted in the U.S., Canada, Australia and New Zealand. Which is odd for a psychosomatic condition. Unless, perhaps, “aberrant illness beliefs” can be passed via the blood.
I and many like me have suffered years of frustrations additional to the actual symptoms of my illness: years of feeling a burden to my doctors, years of struggle for rightful benefits to help fund the literally thousands of pounds worth of treatments I have been forced to research and fund myself, and years of bureaucracy imposing its reality upon the one I hold personally and know, unfortunately, to be true. Yes, mine is yet another ME horror story. Though this one at least has a happy ending. I am getting better, hence the ability to write this article, and the desire to do so. This has been written for all those still stranded in stalled lives, those literally weakest members of our society who continue to be neglected by their health service, who in their darkest hours are sent through, quite literally, sickening further trials for their rightful benefit support. Yes, I’m getting better, and in spite of the system. I’m getting better not by pushing myself to greater and greater activity, nor by changing “illness beliefs”, but by a truly rational and open-minded investigation of my symptoms and a wide array of potential therapies. You know, like medical professionals are supposed to do.
While the tide may well be about to finally turn, it may yet be some time before we discover the full story of ME and how it’s been dealt with by the authorities. Intriguingly, the MRC has a file on the subject going back more than 20 years, stored in the government’s national archives at Kew, much of which, for some reason, has been redacted until 2071. Yes, 2071. By which time, of course, disease, political expediency, medical malpractice, scientific fraud – and, likely, you and I – will all be history.
During an interview for a BMJ podcast last year, Simon Wessely said, “It may well be in a hundred years’ time people [will] look back and laugh at our pathetic and puny approaches to this illness.” It won’t take that long, Simon. Not even until 2071. It’s already been happening for quite some time.