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The Importance of Being ...


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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Universal access to antiretroviral drugs in Africa? Not yet. New


It 's just released report of the WHO project to ensure universal access to antiretroviral drugs in Africa (Toward Universal Access, http://www.who.int/hiv/pub/2010progressreport/en/index . html). The report shows that the goal of providing universal access to drugs by 2010 has not been achieved, as only one third of HIV positive people in Africa have access to antiretroviral drugs, and only just over 50% of pregnant women HIV positive have access to antiretroviral drugs, which help protect the fetus from the transmission of the virus.
Not all data in the report, however, are negative. In fact, five years ago the number of pregnant women HIV positive che aveva accesso i farmaci era solo del 15 %, per cui c'è stato un salto significativo verso l'obiettivo di eliminare la trasmissione madre-figlio dell'HIV entro il 2015.
Il problema principale mostrato dal report è però il seguente: la maggior parte delle persone sieropositive in Africa in realtà non sa di esserlo. Secondo dati recenti, nell'Africa subsahariana la percentuale di persone che conoscono il proprio status HIV è minore del 40%. Stigma, discriminazione e marginalizzazione sociale continuano ad essere un problema quotidiano per le persone HIV positive, e i programmi di test e counselling non sono spesso adeguati al contesto locale, secondo il report dell'WHO.

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public apology to Clinton for a forerunner of the Tuskegee study


In 1997 it was the then U.S. president, Bill Clinton, having to publicly apologize to the victims of the infamous Tuskegee study, which for over 40 years-from 1932 to about 400 197-2 cotton pickers Alabama infected with syphilis were deliberately left without care then existing, penicillin (dell'apologia The official video is here: http://www.youtube.com/watch?v=l1A-YP24QwA).
With public apology of the President of the United States had arrived too large loans, which had allowed the establishment of the Center for Bioethics of Tuskegee, was officially inaugurated in 1999 (http://www.tuskegee.edu/Global/category.asp? C = 35,026).

Now, almost 15 years later, it was for the wife of Bill Clinton and U.S. Secretary of State, Hillary Clinton Rhodham, apologize publicly for another trial that looks incredibly to Tuskegee. There is still a name that refers to the study, but they are aware of the injection and repeated the syphilis bacterium in at least 700 people unaware of everything, which took place in Guatemala from 1946 to 1948, when in fact about 700 people, including prisoners, the sick mental and soldiers-those in bioethics today would surely call the categories "vulnerable" - have been infected with syphilis, then to verify the effectiveness of penicillin as a treatment. Unlike the Tuskegee study, in fact, the sick and was given penicillin.

types of modes of infection were: a) infected prostitutes were paid to infect the "clients", b) to other inmates, so obviously the option a) could not be reversed, the bacteria were directly cut played on the genitalia, face or limbs of men, or c) in some cases even a needle puncture.
Apart from the scenario of injection through prostitutes, then it is difficult to think that the poor were being kept without realizing that something strange was happening not!

The experiment was brought to light by Susan M. Reverby, a professor at Wellesley College, che aveva inizialmente presentato le sue ricerche sul caso ad una conferenza lo scorso gennaio, senza però aver ottenuto un'attenzione particolare. Questa è arrivata nel giugno di quest'anno, quando Reverby ha mandato una bozza dell'articolo che stava preparando sul caso per il Journal of Policy History al Dr. David J. Sencer, ex direttore del Centro per il Controllo delle Malattie in US. E' stato quindi il Dr Spencer -apparentemente dotato di più potere politico della professoressa Reverby- a spingere il governo statunitense a iniziare investigazioni più approfondite sul caso.

La professoressa Reverby afferma di essere incappata in alcuni documenti che parlavano del caso in Guatemala all'Università di Pittsburgh già nel 1985. The documents were signed by Dr. Cutler, principal investigator of the study in Guatemala and-feel-feel involved even after the Tuskegee study. The eminent Dr Cutler has continued to defend the scientific value and ethics until his death.

Among the public reactions to Hillary Clinton's apology, it seems interesting to report that Professor Mark Siegler, director of the MacLean Center for Medical Ethics at the University of Chicago, according to the study in Guatemala is much worse than the Tuskegee in the Tuskegee study the men were already infected and he was not given the available treatment, while in the study in Guatemala men were deliberately infected (Remarks of Professor Siegler is located on the New York Times from which I took the information and which can be read here: http://www.nytimes.com/2010/10/02/health/research/02infect. html? _r = 1 & hp). What is better then
: deliberately infecting men (by various means more or less pleasant, as we saw above) and then treat them (and thus possibly save them), knowingly or not to treat people already infected and socially disadvantaged?