Thank you for all the people who have read my notes over the last couple of years. The website will be going offline on 12/11/2026. 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 full-time job for some people), it is for a blog like this one to gain momentum I hoped for. I do not have time, will or motivation to deal with any of that.
I have managed to find some genuine acceptance of my condition and brought back a lot of discipline into my life, which allowed me to circumvent some of my limitations and try to focus back on living. Absolutely no thanks to doctors or mental health “professionals”. This is not something that happens, because you read a post or a couple on Reddit about how someone came to terms with their disease. You won’t trick your brain out of certain “thought patterns” into being happy by a few CBT sessions your insurance company benevolently approved if you’re in the US, or a different bureaucratic behemoth if you live elsewhere, such as NHS in the UK.
You may also eventually come to a conclusion that your disease is too severe and too limiting to lead the life you want for yourself (which may be true); and finally that the cure or even any decent palliation is nowhere on the horizon and likely won’t materialize in your lifetime, due to systemic abuse of medical research resources, which are being pissed away on a gazillionth study on poor coping and maladaptive beliefs in ME/CFS, IBS or what have you. This is is not talked often enough unfortunately. My closest friend suffering from ME couldn’t bear all of that any longer and committed suicide a few days ago.
I am not under any illusion about how many people will read this post. There’s zero search-engine optimisation going into it or zero type of any promotion. It will probably be just a couple of friends to whom I’ll send it. And that’s okay with me. I will likely try to save my previous entries and will still be available on Reddit if anyone needs any help navigating their neglected medical conditions.