Epistemic Injustice in "Evidence Based" Medicine
Why We Need to be the Experts in Ourselves
“Epistemic injustice is injustice related to knowledge. It includes exclusion and silencing; systematic distortion or misrepresentation of one's meanings or contributions; undervaluing of one's status or standing in communicative practices; unfair distinctions in authority; and unwarranted distrust.”
Real Life vs Clinical Knowledge
Often, patient groups face epistemic injustice when they find things that work but which have not as yet been tested in clinical trials. The sum total of their real world findings are often dismissed as “anecdotal”. On the contrary, I have long believed that the evidential real world, lived experiences and cumulative wisdom of groups of people with a given diagnosis should count just as highly, or more so, than data collected in unrealistic, academic, or clinical settings.
The experiences of real people which don’t match the textbook understandings are often derided and dismissed using terms like “its all in your head”, or “psychosomatic” [which is a double injustice, both the use of this word to denigrate, but also the high-jacking of a term which encompasses the vital concept that the mind-body is unified].
There is another form of epistemic injustice: injustice towards science synthesis and autodidacts, in favour of specialism and expertise. When we find and discover for ourselves new connections by synthesizing the scientific literature, in which some parts of the big picture do not arise from the speciality journals directly related to a given medical condition, these new insights are often ignored by the specialists. This is because they tend to have little or no knowledge of the vast sea of the wider literature which is on the face of it is peripheral, but where relevant findings and important pieces of the jigsaw can still be found.
An example of this is the lack of trauma awareness in medicine: the realization by people suffering themselves and by therapists too of the central role of chronic stress in the root causes of many chronic diseases barely makes it onto the radar of the medical establishment. Similarly, for the role of nutrition.
Indeed, a BMJ article from 2022 “The Illusion of Evidence Based Medicine”, from which the quotes below are taken, describes other forms of injustice in health and medicine around who sets the agenda, who controls what evidence counts, and who decides which evidence will and will not be gathered in the first place, i.e. what protocols will or will not be tested.
“Medicine is largely dominated by a small number of very large pharmaceutical companies, that compete for market share, but are effectively united in their efforts to expanding that market.”
“Scientific progress is thwarted by the ownership of data and knowledge because industry suppresses negative trial results, fails to report adverse events, and does not share raw data with the academic research community.”
“Patients die because of the adverse impact of commercial interests on the research agenda, universities, and regulators. Hierarchical power structures, product loyalty, and public relations propaganda over scientific integrity.”
Parkinson’s Disease as an Example
Current scientific research is revealing more and more, and at an ever increasing pace, that the view of Parkinson's Disease simply as a neurodegenerative issue, due to the death of dopamine producing cells in the brain causing movement disorders, is no longer a valid or sustainable perspective. Instead, we now know that "Parkinson's Disease" is a whole-system syndrome [or collection of syndromes], as much "body up" as "brain down".
Rather than being classed as neurological, it is becoming clearer that PD, is in fact, a chronic stress related disease which results in chronic inflammation, feeding back with auto-immune, allergenic, toxicological [chemical], and pathogenic [viruses, bacteria, microbes] sources. These connections have all now been proven over and over to be associated with the different forms of PD. Gut and digestive tract issues, vagus nerve damage, physical injury, emotional trauma and sustained stress, genetics and nutritional deficits have all been shown to be major precursors which may lead to increased susceptibility.
The evidence for the above also no longer resides just with the academics and medical doctors, but through the power of social networks of people affected by PD themselves. The knowledge and wisdom is increasingly in the hands of the people directly affected, who are coming together to share their stories and experiences, take surveys amongst themselves, collaborate to perform the scientific synthesis, research reviews and translations, and create best practice for the disease management. In essence, Parkinson's and its proper treatment can no longer be claimed by the speciality of Neurology nor by specialist academics.
As a specific example, when I first started taking responsibility for my own health, began doing my own research, and reporting on my self-experimentations, about seven years ago, the idea that folks could progressively reduce their symptoms through stress reduction, diet and exercise, was largely dismissed by the neurology establishment as “having no clinical trial evidence”.
This was despite the body of anecdotal experiences of people living with the condition, including high profile cases of people who had completely reversed, and freed themselves, from the disease. Moreover, even the claim that there was “no clinical evidence” was wrong at the time, it existed in large amounts in niche, physical therapy and nutritional journals, where specialists never looked. Today, most neurologists accept that stress reduction, diet and exercise helps, but it took the community of people affected by PD years of constantly pushing and proving this for it to penetrate.
“Universities, have adopted a neo-liberal market approach, actively seeking pharmaceutical funding on commercial terms. As a result, university departments become instruments of industry: through company control of the research agenda, and ghostwriting of medical journal articles and continuing medical education, academics become agents for the promotion of commercial products.”
“The corporate university also compromises the concept of academic leadership. Deans, (proper academics) have in places been replaced with fundraisers and academic managers, who are forced to demonstrate their profitability or show how they can attract corporate sponsors.”
“While universities fail to correct misrepresentations of the science from such collaborations, critics of industry face rejections from journals, legal threats, and the potential destruction of their careers.”
Experts in Ourselves
So we, the people affected directly by chronic diseases, have been collectively reviewing and digesting the most up-to-date scientific literature... and the evidence is now in! It points overwhelmingly to the fact that the medical establishment is working based on false assumptions and on information now decades out of date and completely overturned by these modern scientific understandings.
We've had to become the experts in ourselves, because our suffering was far too great, and the lure of cure has never come close to being fulfilled after decades of promises!
Let's think about why this became necessary though. Is it because the poor old doctors, with their endless lists of patients to see at ten minute intervals, don't have anything like the time available, nor the training in how to do proper scientific research, nor anywhere near the breadth of knowledge required, simply don't have the slightest chance of keeping up, let alone in being able to translate modern science into the practice of treating people?
“In medicine, those who succeed in academia are likely to be key opinion leaders (KOLs in marketing parlance), whose careers can be advanced through the opportunities provided by industry, physicians are selected based on their influence on prescribing habits of other physicians.”
“KOLs are sought out by industry for this influence and for the prestige that their university affiliation brings to the branding of the company’s products. KOLs present results of industry trials at medical conferences and in continuing medical education. Instead of acting as independent, disinterested scientists and critically evaluating a drug’s performance, they become what marketing executives refer to as “product champions.”
A case in point about misaligned incentives
100%. So many appeal to authority. My parents asked me what medication I was on. I told them I wasn't on any and that I felt fine. They suggested I go to the doctor just in case there was something wrong with me that I didn't know about. This is how people think now. They both gulp down handfuls of pills everyday because the doctor says.
Nowhere is this principle of the (lack of) democratization of medicine more clear than in the 'treatment' of depression with SSRIs, which allegedly address an imbalance of serotonin in the brain, which is supposedly the cause of depressive illness. Except, at best they are placebos, at worse they cause more harm than good. The 'experts' told us they found the neurochemical path to happiness and they could package it in a convenient pill. The 'experts' were wrong, but they're making an awful lot of money by being wrong. GPs hand out antidepressants like Smarties and no doubt Big Pharma rewards them for doing so.