Final note

Thank you for all the people who have read my notes over the last couple of years. The website will be going offline on 12 I may try to move my article to Substack or some other platform eventually. You may still find me on Reddit. I can’t justify renewing my hosting plan for a few reasons. In early days of my disease, I was looking for ways to cope with my resentment towards the medical systems that largely leave you to figure out your rare and life-altering diseases alone. I thought that a blog such as this would be a good way to redirect those frustrations towards more productive endeavours, like bringing people’s attention to the pathetic state of neurogastroenterology today, to the healthcare psychopathologising people’s natural responses to suffering for various reasons, to doctor’s education being severely lacking in pharmacology, as well as to their pharmacovigilance understanding and education being largely funded by the industry. And perhaps to form some kind of a community. This has been useful to an extent. But I didn’t fully appreciate, or I was in denial, how difficult, in the age of short and stimulating videos, SEOs, algorithms (and all that being a…

Drossman’s focus on the psychosocial in gut disorders — a critique

One could consider that I received a symbolic birthday gift when I learnt that Douglas Drossman — the leading figure of the Rome foundation — is retiring this month. For someone who proclaims to fight stigma against patients with “functional” gut disorders1, he has done an awful lot to repackage some older, now largely out of favour, controversial ideas (e.g. irritable bowel syndrome [IBS] being largely psychogenic) into discourse using terms and descriptions more palatable to the modern scientific discourse. His main “contribution” to the field of gastroenterology is taking the general biopsychosocial model of disease contrived by Engel — his mentor — extrapolating and refining it for use in the more underresearched conditions in gastroenterology; so called functional gut disorders, or disorders of gut-brain interaction, as they have more recently been dubbed. Engel and his biopsychosocial model The biopsychosocial model of disease, as invented by Engel, in short presents as follows: Predicated on the systems approach, the biopsychosocial model dispenses with the scientifically archaic principles of dualism and reductionism and replaces the simple cause-and-effect explanations of linear causality with reciprocal causal models. Health, disease and disability thus are conceptualized in terms of the relative intactness and functioning of each…

Gut-directed hypnotherapy — a revolutionary treatment or a glorified placebo?

If you spend enough time reading about psychology, you will inevitably learn about the replication crisis and the debate whether psychology is a science. You must have heard some people say that it is soft-science at best, not a science at worst. You will usually hear it from the “enlightened” IFLS type of people who believe science to be this absolute monolith, whose results may not be influenced by extrinsic factors (like politics, economy, funding) as it follows a very rigorous method. Their main point is that natural sciences are objective, unbiased, because they are based on hard data that mostly speaks for itself, you just have to come up with the right experiment. In this scenario, psychology and the humanities, in more general, with their more discursive method and more overt incorporation of philosophy are juxtaposed with natural sciences like chemistry, physics, biology, with their heavy use of quantitative tools like mathematics, that are seemingly not subject to interpretation and cannot be manipulated. For some psychologists question “is psychology a science?” will be a question of credibility, as they will see science as the arbiter of truth and anything that falls outside the scientific method is not knowledge. To…

Regular person-to-conspiracy theorist pipeline

People who bash conspiracy theorists or pseudoscience believers often ascribe those beliefs to some general science illiteracy. A frequent conclusion of this analysis is that if those people cracked open a textbook or paid attention during their biology classes, they would have known that doctors know all the best methods to treat them, you just have to trust the process, not listen to the charlatans; that vaccines and drugs in general are safe and you must be stupid to think otherwise. This view presents this cartoonishly binary division — intelligent science enthusiasts (you can’t say “believers”, because some so-called rationalists will get offended that “you don’t have to believe in science, because it’s all proven facts”) vs ignorant masses who would benefit from reading a book. The problem is that this is not how science works in the real world. It is, in fact, something you have to take on faith to an extent. No one, especially not a layperson will be able to completely verify each primary source of a scientific text or even a pop-sci book they read. Unless you are able out to carry out all the cornerstone experiments to replicate their results, verify methodology of each…

How 5-day course of ciprofloxacin turned my life into hell — story

When you think about medication side effects, what normally comes to mind are some uncomfortable feelings like a a bit of a headache, minor stomach discomfort, diarrhoea etc. All of those have two common denominators: one — they are transient; two — they are mild. How they cause these issues may or may not be known, but generally it can be ignored due to benign and self-limiting nature of these symptoms. Most people will be likely also aware of some more serious adverse events, such as seizures, anaphylactic reactions. They are usually seen as serious in the sense that they may be life-threatening under some circumstances, e.g. if not addressed quickly enough. In cases where prompt medical care has been provided, those patients are normally expected to make a complete recovery, with a subsequent note on their file under “drug allergies”. Some patients will also know of more persistent drug reactions, for example peripheral neuropathy caused by linezolid or kidney failure caused by aminoglycoside antibiotics. In these cases, the person taking the drug will sometimes be reassured by the prescriber (if the risk was mentioned at all) that this side effect is normally dose-dependent, appears with long courses and/or high…

Floxing — primer to fluoroquinolone toxicity and iatrogenic harm for non-conspiracy theorists

Modern medicine is one of the cornerstones upon which contemporary societies are built. Many collective efforts allowed to greatly reduce global suffering — examples range from eradication of smallpox and rinderpest thanks to worldwide vaccination programs in the XX century to, more recently, developing (highly active) antiretroviral therapies allowing people with HIV lead healthier lives, where risk of transmission for majority of patients is close to zero1, including highly-stigmatized and criminalized sexual transmission (Undetectable = Untransmittable). Partly due to this, but partly due to major capitalist players in the biomedical market diverting attention to those facts on purpose and incorporating various moral disengagement practices, there is very little space for discourse about drug safety. Anyone bringing up harm inflicted by doctors or medicines is going to attract dirty looks and will need to start with a sufficient disclaimer (as in the case of this post) to nip the tinfoil-hat accusations in the bud. Fluoroquinolones-Associated Disability: It Is Not All in Your Head2 Fluoroquinolone-associated disability (FQAD), fluoroquinolone toxicity — or simply floxing — is a poorly-defined medical entity where previously healthy people suffered disabling, often multi-systemic3 long-lasting and sometimes irreversible adverse events due to taking an antibiotic belonging to the fluoroquinolone…

Medical gaslighting — iniquitous past and bleak present

Gaslighting is a very convenient one-word concept, as its meaning spans complex manipulative practices in various parts of the society (personal relationships, politics and more recently medicine). It reached its peak in 2022, when it became a word of the year on Merriam-Webster Dictionary, seeing a 1740% increase in lookups of the word. Merriam-Webster defines gaslighting as: 1 : psychological manipulation of a person usually over an extended period of time that causes the victim to question the validity of their own thoughts, perception of reality, or memories and typically leads to confusion, loss of confidence and self-esteem, uncertainty of one’s emotional or mental stability, and a dependency on the perpetrator or 2 : the act or practice of grossly misleading someone especially for one’s own advantage “Everyone hurts in one way or another – try focusing less on your pain” Today, I would like to focus on medical gaslighting. It is something that, undoubtedly, a vast number of people with chronic and/or rare conditions experienced at some point. Examining how it comes about and its mechanisms should lead to understanding that it is a problem deeply ingrained in the medical enterprise as a whole (and in some ways necessary for it…

Suzetrigine (VX-548) in the treatment of small fiber neuropathy

One redditor asked me what new treatments for small fiber neuropathy are on the horizon. There’s one drug specifically worth nothing. That is, suzetrigine — even though it’s going to be licensed for moderate-to-severe acute pain for now, they are looking to extend the label to neuropathic pain as well (DPN). It is an interesting drug and in some ways unlike anything available on the market at the moment.. 1. It is a selective Nav1.8 channel inhibitor.1 What that means is that it might have less side effects than other non-selective blockers (like amitriptylline which also blocks Nav1.5 and causes cardiac side effects2). 2. It is supposed to work in the peripheral nervous system, specifically in dorsal root ganglia3 (where the sensory neurons process pain and other sensory stimuli before they enter the spinal cord). So, if it doesn’t affect the central nervous system — specifically, the brain — that hopefully means less side effects as well, as opposed to ALL neuropathic painkillers on the market (again, antiepileptics, antidepressants etc.). 3. SCN10A gene encodes Nav1.8 channels. SCN10A gain-of-function mutation has been described in some patients with small fiber neuropathy.5, Which means that it might be an excellent drug specifically for…

Small fiber neuropathy – myths and misconceptions, pt 1

In my first thematic post, I’d like to talk a bit about small fiber neuropathy (or more appropriately — neuropathies — as we will soon find that in reality this is a heterogenous group of disorders of different etiology1). SFN is traditionally known as a condition manifesting with cutaneous pain or abnormal skin sensations, such as burning, prickling, tingling, numbness. More recently, this proved to be an extremely limited understanding of a very complex disease, as researchers are recognizing a lot of relatively unspecific symptoms due to involvement of autonomic nerves (in addition to sensory nerves).2,3,4,5,6 There are multiple types of nerve fibers in the human nervous system.7 However, discussing all of them is beyond the scope of this post — for now, we are interested only in thinly myelinated Aδ-fibres and unmyelinated C-fibres, as they are the ones affected by small fiber neuropathy. SFN has been linked to their damage or dysfunction. There are numerous myths about this condition — presumably because of it being relatively uncommon,8 difficult (and unprofitable9) to research, diagnose and treat.Those misconceptions can be roughly grouped into three categories that will sometimes overlap: myths believed by patients, by doctors and by general population. In the…

Hello world (of pain)!

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…