‘It is the duty of physicians who participate in medical research to protect the life, health, dignity, integrity, right to self-determination(…) of research subjects'
In the flurry of activities sparked by another media onslaught on the chronically ill on 14th January (to be followed by a similarly, probably more loosely, orchestrated attack in Sweden on 15th January), I got caught up in collaborating with dozens of others who had written, and keep writing, brilliant, witty, intelligent, emotional, heartrending responses to journalists and science editors. 14th January 2015 was an exhausting day and on a more serious note, it was an unnecessarily painful day, too. While I was comforted by the responses from other sufferers in the UK, Sweden and elsewhere, I couldn’t help asking myself what sort of world we would live in if a serious and debilitating disease such as myalgic encephalomyelitis (ME) were taken seriously and if, as a consequence, we had access to treatment worthy of the name treatment. Sadly, we are not there yet but there is no doubt in my mind that ME will eventually be given the same status as similar diseases including multiple sclerosis.
Meanwhile, as well as dealing with the pain inflicted by the illness itself, ME sufferers have to contend with the calumnies inflicted upon them by the psychiatric lobby (a carefully chosen term meaning “concerted effort to further vested interests”) and other medics pushing the psychogenic model. These medical ‘professionals’ dismiss patients displaying diffuse symptoms as psychologically challenged or disturbed, often without even taking a blood test, with sometimes devastating implications for the patient. What medics engaging in such abominable practices, towards often severely ill patients, hope to gain is unclear. Biomedical research, abysmal as funding has been, has produced data that clearly contradicts the paradigm in which CBT and GET have been thriving in the past two decades, to the detriment of sufferers from illnesses that are patently not ”all in the mind”[5,6].
The apearance of yet another somewhat rehashed publication, based on the absurd PACE trial from 2011, in The Lancet Psychiatry is no guarantee of scientific rigour. As a published academic I have reason to suspect that the peer review process within certain academic journals has become a questionable praxis. In small, narrow fields of research there are few experts available to peer review submitted drafts for publication. Peer review is supposed to be blind but even I, coming from the much wider field of education research, have been given texts in the past whose author(s) I identified by their writing style and the more specific research questions posed. Any ‘blind’ peer review conducted on a text from Professor Chalder et al would and could not be blind, as any reviewer would recognise the author. This is what happens when a tight-knit group of researchers repeat themselves and milk their own research to such an extent they no longer produce anything original. As the reviewers themselves are members of a tight-knit community of, in this case psychiatrists and psychotherapists, they would be reluctant to criticise let alone reject a paper on grounds of its lacking scientific rigour (even if they were to find the methodology lacking); never mind how biased the research questions or how skewed the selection criteria. Scientific editorial boards will always at least try to allocate sympathetic peer-reviewers/scientists who know the literature and field of research.
The unwillingness to criticise or reject Professor Chalder’s research – if grounds for rejection were found – extends to the weightier publications regarding the PACE trial. No one would wish to stand up to the likes of Professor White et al, not if they are keen to advance their own careers as researchers and are therefore dependent on publications in journals such as The Lancet Psychiatry. After all, a certain scientific paradigm with a set of specific assumptions and hypotheses is at stake, ranks are closed in order to protect the profession and the specific discipline as well as the narrow field of interest within. When scientists are entrenched in their own paradigms, there are no other frames of reference; there is no referencing of research carried out in other disciplines. Existing knowledge that should be incorporated in their research for the greater good, in this case helping ill people get the right treatment for the right illness, is ignored.
It is stating the obvious to say entrenched scientists are self-preserving and status quo obsessed. They are not interested in what a community of sufferers might say, instead they are concerned with furthering their careers by getting another publication under their belts: the more publications, the greater the fame, the better the funding. This is where ”Fear Avoidance”, a linguistically nonsensical term, comes into the picture. When a circle of academics feels their work is questioned, the closing of ranks is no longer merely one option among other, more ethical choices; it becomes a means of survival to a degree that makes them invent terms such as ‘fear avoidance’, an ingenious strategy to blame those who do not benefit from their research, which in this case includes anyone suffering from ME.
To indulge for a moment in wishful thinking: a retraction of at least some publications in the genre of ‘CFS’ and ‘Fatigue’ ought to be more than a vague possibility. After all, the methodology is flawed as numerous excellent papers and qualified comments indicate, and (unethical) mistakes have been made that would not have passed muster in a thesis at masters level in any other discipline. I, and many scientists, have received far harsher critiques for simply not showing sufficient humility towards the researched in our first drafts of a research proposal. Humility, respect, and well-considered research ethics (that would have to show a deep understanding of the anticipated backlash and implications for sufferers, so that ethics committees are able to weigh the pros and cons of a proposed study) are tenets on which scientific schooling is normally based. Somewhere in the intricate process of academic publishing and funding, things went terribly wrong with regard to the PACE trial, with subsequent studies drawing heavily on it and meta-analyses conducted.
Not only has this type of ‘science’ produced nothing of value, but also by monopolising the limited funding available*, it has prevented research that could and should have taken place in disciplines including medicinal chemistry, immunology, virology, and endocrinology. As a researcher I cannot accept the flagrant breach of research ethics that has caused suffering and marginalisation. The history of science is littered with horrendous examples of abuse and persecution in the name of science. I am afraid the case of myalgic encephalomyelitis will go down in medical history and in the history of science as one more such scandal. As we are, proportionally speaking, very few sufferers we will become but a footnote. I can only hope that the unnecessary pain and destroyed lives that footnote represents, might be enough to inspire at least a handful of future psychiatrists (and medics) to engage in more worthy and dignified practices.
*This is not to excuse the funding bodies, which have enabled the psychiatrists to monopolise the limited funding available for ME research. The historic failure of the Medical Research Council to fund biomedical research into ME has been little short of a disgrace
4) Kennedy, A (2012). Authors of our own misfortune? The problems with psychogenic explanations for physical illnesses. CreateSpace Independent Publishing Platform.