I have long been thinking what to call this blog. As trivial as this task may seem, there is little doubt in my mind that it is one of the most important steps on the way to a successful project for several reasons.
The title needs to be something fairly short, unique and memorable. Bonus points if it is even loosely related to the subject.
Maladaptive cognitions (also thinking, beliefs and behaviours) is a term borrowed from cognitive psychology which describes negatively biased, inaccurate and rigid beliefs. According to cognitive models in psychology, they are central to one’s identity (“core beliefs”) and are one of the major causes of emotional disturbance, especially when applied to mood and anxiety disorders.
Unfortunately, as cognitive psychology seeps into the management of non-psychiatric conditions, where the pharmacological treatments are not particularly effective (such as the so-called disorders of brain-gut interaction, or other “functional” disorders; or emerging/poorly-understood diseases, such as post-infectious syndromes — e.g. long COVID, ME-CFS), term “maladaptive beliefs” may sometimes become a double-edged sword in the hands of a clinician and serve mainly to gaslight — as it is easier to believe the patient is not of sound mind, rather than assume some poorly-described pathology with no clinical biomarkers is at play. Which ultimately erodes patient-doctor relationship and adds to stigma.
The subtitle here mainly plays the simple role of conveying to the reader what topics the blog is going to be about. In this case, the most general theme is going to be health. I intend for the content to mostly revolve around a few slightly more specific, and in my opinion neglected, themes. I would delineate them as follows:
- Pharmacovigilance — as the science of drug safety; but also a bit more reterritorialized meaning of the term, pharmacovigilance more broadly understood as patient-driven praxis1 — as a set of tools and skills they may acquire that help them reach informed decisions about their health. Be it understanding of the underlying mechanisms and common misconceptions about their disease, or simply knowing how to read research.
I would like to describe how medical research decides what interventions are useful and safe. A quick example of that is knowing how to read simple, but incredibly useful, statistics (that a lot of medical practitioners are not be familiar with) such as NNT.
I will talk about how drug and medicine research translates to what doctors actually do in clinics. I might explore the relation between the research and clinical practice, and how they both may be shaped by extrinsic factors, like capitalism.
It is my hope this will give you, my dear reader, some tools that allow you to decide the risk-benefit ratio of your treatment, so you can rely less on goodwill explanations from your doctor, and more on your understanding of how science operates in real world. - Floxing – at the risk of losing some scientific credibility, I decided to use this patient-coined term as opposed to its more formal counterparts like Fluoroquinolone-Associated Disability (FQAD). It feels more appropriate, as I imagine my target readers to be patients. The word “floxing” gives away a more personal experience, an intimate first-hand knowledge about the disease, rather than dry collection of scientific data. It emphasizes the ability of patients to organize self-help groups, share information and to extend support to each other, even when they feel they received little help from the medical system.
I will explore the current evidence-base of potential mechanisms behind floxxing, treatments, but also topics like medical gaslighting, bias, resistance of new trends in medicine. - Rare diseases — especially small-fibre neuropathy — why the treatment is so underwhelming and diagnosis so difficult; postural orthostatic tachycardia syndrome and others; functional diseases — I will try to look closely at the problems this term creates.
To reach an in-depth understanding of all of the above, I feel it needs to be intersected with narratives such as political economy of science, capitalism and philosophy, that will likely find their way into some posts, most likely not as standalone topics.
My goal is not to flood the reader with a lot of pretentious words, and I plan to insert links to some sort of definition, whenever it feels necessary. I will both rely on more formal and community-provided definitions if some blogger or Reddit user provides a better explanation than an encyclopaedia. I am going to try to include the more concise explanations, as long as they are not too watered down. You may not immediately understand some of these concepts, it doesn’t mean that they are some useless philosophical babble — I would argue that some, like biopower, are best picked up organically, based on contexts other people use them in, not relying solely on studying books etc.
As to what this space will not be — if you are hoping to find information about treatment of fluoride poisoning, how to battle “invasive Candida” or how to cure your serious medical symptoms with naturopathic medicine or through diet, I am afraid you will be disappointed.
There is little doubt that all of these theories are the result of a massive discord between patients’ needs and what medical system can offer them. To be a bit less vague — again, there is a vast landscape of poorly-understood diseases for which there is very few or no effective treatments. The medical system is often not great at communicating this to patients, and on other occasions patients do no (want) to believe this state of things and try to take matters into their own hands. As painful as it may be to admit, medicine in its current state is mostly helpless when it comes to some conditions.
Another problem is iatrogenic harm, especially when unrecognized, as in a lot of cases of FQAD. To be harmed, or even disabled, by a medication — without a word of warning of possible severe adverse events — is an experience that may break the most indomitable people and cause a complete breakdown of their trust in allopathic medicine.
This is a breeding ground for various “grassroot” medical theories made by suffering people, often with little understanding of science; sometimes patched together from different pieces of information they scrambled to find, scattered in articles of dubious quality.
Patients can hardly be blamed for this state of things, so while the theories themselves are often an object of ridicule, this blog will not be a space to mock the actual suffering people behind/believing them. Nonetheless, peddling pseudoscientific fads, snakes oil salesmen, tinfoil theories about people being poisoned on purpose (at some point, I aim to present a more nuanced view on why severe adverse events still happen more often than they should) will not be tolerated in this space.
For now, I want to see how this project will play out in the following few months. Expect another post in 2 weeks.
- “Praxis is an iterative, reflective approach to taking action. It is an ongoing process of moving between practice and theory. Praxis is a synthesis of theory and practice in which each informs the other (Freire, 1985)” ↩︎