No, non Ernesto, ma "encefalopatia (o encefalomielite) cronica mialgica" (myalgic encephalopathy, CFS-ME) invece di "sindrome da affaticamento cronico (chronic fatique syndrome, CSF).
La settimana scorsa infatti si è riunita all'FDA una Committee to assess whether to change the name of this disease from CSF to CSF-ME, characterized by a variable degree of persistent fatigue and not related to exercise, or relieve by rest, persisting for longer than 6 months. The etiology of the disease is still unknown, although it is believed a cause or concomitant viral infection, the diagnosis itself is difficult and there is no effective cure.
The FDA decision to change the suffix is \u200b\u200bcontroversial, because "ME" denotes inflammation of the brain and spinal cord, whereas in reality there is no strong evidence that links the disease to the nervous system.
However, this decision was dictated in part by the fact that many patients find the nomenclature banal, and partly from the fact that apparently even other bodies, including those responsible for the disbursement of funds for research, share more or less consciously or explicitly that view.
In the words of Susan Levine, a member of the committee responsible for the FDA's decision, "If the name of the disease sounds more scientific, then it is likely that we will receive more money, if that has a name that people think that you only want to take a nap. "
Brutal, but effective, the comment of Levine. The nomenclature matters and how, in science. Counts in applications for grants, counts when it comes to deciding how to allocate financial resources, has therefore also the probability di trovare una cura efficace e ha ripercussioni reali sulla vita delle persone affette.
Questo caso non è unico. Per esempio, mi viene il mente quello delle "cancer stem cells", le cellule staminali del cancro, per cui negli ultimi anni si è assistito letteralmente ad un boom in pubmed del numero di pubblicazioni che riportano dati sulle cancer stem cells in ogni tipo di tumore, anche quando le somiglianza con la loro controparte, le cellule staminali "normali", è a dir poco, lassa.
Per chi fosse interessato, ulteriori informazioni si possono trovano sul blog di Nature intitolato, in onore di Mary Poppins (almeno credo!) "A spoonful of medicine":
http://blogs.nature.com/nm/spoonful/policy/
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