About my father

My father’s talent and imagination were uncommon.

He started learning computer-aided design in 1988 for structural engineering applications while using computer-aided calculation for the same purpose even earlier, in the late Seventies, with a very rudimentary calculator produced by Texas Instruments. He was a self-taught and talented painter and illustrator, too (see figures).

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He loved music, mainly classical music, jazz and some American singers (Frank Sinatra and Liza Minelli among them) and he used to build his own Hi-Fi sets.

During the Apollo missions, he calculated the exact trajectory of the Apollo spacecraft: the orbit around the Moon and the way back to Earth.

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He had an interest in early hominids and in the origins of our species. When I was a child I had the chance to dream of a lost world of ape-like men, as I explored his collection of magazines from the US, mainly National Geographic and Life.

He could have even found a cure for ME/CFS, had he had a chance to try. Who knows. He died in 1996.

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Once in a while

I know too well that if I am not able to describe in a Galilean sense the aberrant biological phenomenon that has taken me out of the world, I will have no hope of returning to the world as an active member of society. It is clear to me that there are no shortcuts.

Yet, once in a while, I am surprised to discover a boyish and irrational desire in my mind: to be able to awake one morning finding myself lucid, able to move around in the world with the freedom that too often I took for granted.

Sometimes I just want to awake, drink coffee, get my bag and get on the bike; to live among human beings, like one of them, as it used to be.

In the company of my mind.

Why we can’t use LTTs, yet

A line of T cells (called Ob.2F3) expressing the same T cell receptor (TCR) from an MS patient was studied in 2014 and it was found to proliferate when incubated with 4824 different peptides. Thirty-three of them were further studied (see figure) and found to belong to both Homo sapiens and several different, unrelated microbes (Birnbaum ME et al. 2014). The taking home message here is that T cells are not specific to a single pathogen, they are highly cross-reactive, as it was already pointed out in this pivotal study: (Mason DA 1998). And this means that we can’t use lymphocyte transformation tests (LTTs) the way we do now. 

I feel really frustrated when patients send me their LTTs and ask me to comment the results. I have to say that they have vasted their money and that these results are useless. I do hope that my blog can make a difference and stop this unfair commerce at the expenses of desperate folks.

Crossreactive epitopes
Figure. A set of 33 peptides (both human and environmental) predicted to be specific epitopes for both Ob.1A12 and Ob.2F3. From (Birnbaum ME et al. 2014).

 


 

 

 

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The dark matter of medicine

Most of the mass of the universe consists of dark matter. And we can recognize its existence only indirectly: we see its gravitational effects, the acceleration of other known constituents of the universe. In the same way, we know of the existence of ME/CFS mainly form its effects: huge damages in the lives of patients affected.

Physicists are now trying to identify the exact nature of dark matter and they are excited by this new field. Unfortunately, physicians don’t always share the same excitement when it comes to investigating the “dark matter of medicine”.

Domande e risposte

Quello che segue è il video della sessione dedicata alle domande del pubblico, alla fine del Convegno Internazionale sulla ME/CFS, organizzato da Associazione CFS Onlus e da CFS Associazione Italiana, in collaborazione con la Open Medicine Foundation. Al minuto 6:30 c’è un dibattito interessante in cui mi inserisco anche io. Si ringrazia Giuseppe Pozza per aver realizzato il video.


 

 

 

 

Vent’anni di silenzio

Quasi 20 anni fa, quando cominciai a stare male, la situazione si prospettò da subito non felice. Nessuno sapeva cosa avessi e in breve mi ritrovai con una forma di disabilità pervasiva e sconcertante. La cosa che più duramente mi colpì fu la disabilità cognitiva: non potevo più leggere, né pensare lucidamente. Quindi per me non ci sarebbe stato futuro.

Era finita. Il mio desiderio di studiare era velleitario e appariva chiaro che non avrei potuto fare più nulla con la mia testa, nonostante avessi dimostrato ottime capacità fino a poco prima. Nello stesso tempo, il corpo era diventato incapace di sostenere a lungo la posizione eretta o seduta e di portarmi fuori di casa.

Non c’erano cure, non c’era spiegazione. A 20 anni ero nelle condizioni di una persona estremamente anziana, non autosufficiente. Avrei voluto chiedere consiglio ai miei genitori, ma erano già morti da qualche tempo. Amici e parenti scomparvero, il telefono smise di suonare e ricominciò solo con l’arrivo dei call center.

Ancora oggi mi chiedo perché le persone che mi conoscevano, gli amici stretti di famiglia o i parenti, scomparvero senza salutare. Nelle mie condizioni fu una condanna a morte. La malattia di cui soffrivo non veniva trattata negli ospedali e non era neanche conosciuta dalla scienza o riconosciuta legalmente. Non mi erano concessi i diritti di cui godono cittadini con disabilità anche molto minore della mia. Per me non c’era nulla, solo silenzio.

Oggi resta un senso di amarezza e incredulità per la brutalità gratuita di quel silenzio, per le mancate spiegazioni, e per l’incoraggiamento negato, davanti a una difficoltà così enorme.