I am aware that these are just messages floating in the silence, stored somewhere in the planet as binary numbers. I am writing to myself, mainly, from my remote hiding place.
I have travelled through ages, without really being part of them. All alone with my problem. As a patient with a rare disease that doesn’t even have a proper description, I do not belong to humankind.
But humans have paradoxical behaviours, they care more about a man who lived five thousand years ago in the north of Italy, trapped in the ice of our highest mountains, than of clochards that live right now in pain and loneliness in their community. So it might be that generations from now, someone will find these notes, an archaeologist who will try to build my story, from fragments of what I left behind: drawings and calculations. Mathematics is a universal language, after all, and to some extent, even art is universal; not always but often, good art is forever.
If I fail my mission, history will never record my existence. But it might be that at some point in the future someone will find these notes frozen in the ice of a planet long forgotten by humans themselves, as we now have forgotten Africa, the place we all come from.
paolo maccallini 
You are not forgotten and your disease is not rare, according to statistics.
But that was written beautifully.
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Hi Libby, thank you for your comment.
The reason why I say that I have a rare disease is that, granted that I fit the different diagnostic criteria for ME/CFS, I am different from the average ME/CFS patient that is a woman, with an onset at 35 years of age, with a myalgic component. Most of the studies have been made on these patients. So I think it is unlikely that they have some relevance for me. Moreover, it is pretty obvious that I am different from the other patients: I have never found a patient like me.
I have discussed this problem further in the following blog post:
https://paolomaccallini.com/2020/03/31/why-i-study-my-own-disease/
I have calculated that 3 out of 1000 ME/CFS patients have my disease, which means that my disease has a prevalence of 1/100’000. In Europe a prevalence lower or equal to 1/2’000 defines a rare disease. Scientists are probably studying another disease, not mine. So I have to study it myself.
This is why I say that I have a rare disease.
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